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Prednisone Withdrawal Symptoms: How Long Do They Last?

Prednisone is a synthetic corticosteroid drug that is used to treat a variety of conditions including: asthma, adrenal insufficiency, Cron’s disease, inflammatory diseases, some types of cancer, hives, nephrotic syndrome, lupus, Meniere’s disease, and hives. It is also used to help with organ transplants by preventing bodily rejection to the new organ. This is a drug that is also used to help with severe migraine headaches, leukemia, lymphoma, and various types of tumors. It works by replacing steroids that are naturally produced by the body.

Essentially this is a drug that mimics your body’s natural hormones produced from the adrenal glands. When prescribed in significant doses, Prednisone works to help suppress inflammation. In the event that a person’s immune system is attacking its own tissues (as is the case with autoimmune diseases), this drug can help reduce activity by suppressing immune system functioning. It affects the “HPA” or hypothalamus-pituitary-adrenal axis when taken longer than 7 days.

Although Prednisone can be a life saving drug when used to treat certain conditions, others that are on it for a less-significant condition may be extremely unhappy with the drug’s side effects. If you can no longer cope with the side effects as a result of Prednisone use, it may be time to withdraw. Once you have spoken with your doctor about withdrawal and have made up your mind, you will want to educate yourself on the potential symptoms that you may experience upon discontinuation.

Factors that influence Prednisone withdrawal include:

When it comes to any medication, there are factors that influence the severity of withdrawal. Various factors that will play a role in determining how difficult the withdrawal process is include: time span, dosage, individual physiology, and whether you quit cold turkey or tapered. If you experience a very severe withdrawal, it is likely due to one or more of these factors.

1. Time Span

How long have you taken Prednisone? In general the longer you are on this particular steroid, the longer it’s going to take your body to readjust to functioning without it. If you are on it for longer than 2 weeks, it can affect your adrenal glands’ ability to produce cortisol. Therefore your body and brain become dependent on the Prednisone for everyday functioning when taken for an extended period. If you are only on this drug for a couple weeks, you should have a much easier time coping with the withdrawal compared to someone on it for months and/or years.

2. Dosage (2 mg to 80 mg)

Since this drug is used to treat a variety of conditions, the dose that you are taking will depend on the condition that you are treating. The maximum recommended dose per day is 80 mg. Most people are taking somewhere between 2 mg and 30 mg per day. In any event, the greater the dosage you take for an extended period of time, the more severe your withdrawal symptoms will likely be. Someone that is on a very low maintenance dose of Prednisone should have a much easier (and quicker) time withdrawing compared to someone who is on the maximum recommended daily dose.

3. Individual Factors

Since this is a powerful corticosteroid, it likely will result in withdrawal symptoms in nearly everyone that took it for an extended period of time. However, the severity of those symptoms can vary depending on the individual. People that were on very high doses for a long term may have a very severe physiological response upon discontinuation, while others may have less of a reaction.

Just know that what you experience may be more or less severe than someone else – as everyone’s situation is different. One person may recover from their withdrawal within a few weeks, while another may experience aches and pains for months following their last dose of Prednisone. The recovery time varies among different individuals.

4. Cold Turkey vs. Tapering

It is never recommended to quit taking Prednisone “cold turkey.” It is thought that if you quit taking this drug cold turkey from a relatively high dose, it could result in potentially dangerous withdrawal symptoms. If you were on Prednisone for an extended period of time, your body likely has become fully dependent on this drug for functioning and providing cortisol.

Since your body has stopped naturally producing cortisol, stopping Prednisone cold turkey can be a recipe for disaster. Why? Because your adrenal glands may not be able to kick back in and produce cortisol. Therefore it is important to gradually “wean” off of this drug to give your adrenal glands some time to pick back up with natural production.

In order to prevent doing damage and or experiencing a nasty cold turkey withdrawal, some have recommended reducing the dosage of your medication by 5 mg every 7 days. If you are unsure about how to taper, be sure to talk with your doctor and voice any concerns you have. If you were on Prednisone for a very short term (i.e. 7 days or less), it is alright to quit cold turkey.

Prednisone Withdrawal Symptoms: List of Possibilities

Below are some common withdrawal symptoms associated with taking Prednisone. Recognize that these are some symptoms that you may experience upon discontinuation from this particular drug. Also understand that you may not experience every symptom listed below and that the intensity of withdrawal will likely differ based on individual circumstances.

  • Abdominal pain: Many people notice intense abdominal pain when they first stop taking Prednisone. This may be in the form of intense stomach aches and/or burning sensations throughout the stomach.
  • Anxiety: Many people report depression, but a lesser reported symptom is that of anxiety. You may feel somewhat nervous and/or have relatively intense anxiety during withdrawal. It is thought that this is a result of hormonal changes and HPA functioning.
  • Body aches: Many people report severe body aches when they stop taking this drug. These aches may last for weeks following your last dose of the drug. If they become too intense, you should consider tapering more gradually.
  • Decreased appetite: Since Prednisone is associated with significant increases in appetite, when you stop taking it, you will likely notice a major decrease in appetite. You may have constantly felt hungry while on it, but when you quit taking it, your appetite will significantly drop off.
  • Depression: Another common symptom to experience upon discontinuation is that of depression. You may feel very depressed in conjunction with significantly low levels of energy. This is in part due to lack of stimulation. Your adrenal stores need to build themselves back up for you to feel normal. Just know that your brain and body will eventually fully heal as time passes.
  • Diarrhea: Some people report diarrhea when they first come off of this drug. If you are experiencing this, be sure to pick up some Imodium (available over the counter) – it should help ease this particular symptom.
  • Dizziness: This is a common withdrawal symptom from any drug. If you feel dizzy, just know that it should go away within a few weeks. The most intense dizziness should subside after the drug has been out of your system for a week.
  • Fatigue: Most people end up having to deal with extreme levels of fatigue and low energy when they quit this drug. If you feel fatigued, just know that it is a result of your body withdrawing from a drug that it has depended on for functioning for a long period of time. Additionally you no longer have adequate amounts of cortisol to provide the body with energy. It will take some time before these homeostatic levels are reestablished.
  • Fever: Some individuals report having a fever when they stop this drug. This is your body’s way of trying to readapt to functioning without Prednisone. The fever should not last more than a week or so after your last dose. If it persists, be sure to consult your doctor and/or another medical professional and consider a more gradual taper.
  • Headaches: Since this drug actually helps many people with severe headaches, coming off of it may result in even more extreme headaches than initially experienced. Some individuals report constant headaches, while others report full-blown migraines during withdrawal.
  • HPA Changes: Anyone who has taken this drug for an extended period of time will exhibit changes in their HPA (hypothalamus-pituitary-adrenal axis). In other words, the adrenals are no longer producing sufficient levels of cortisol because they have become accustomed to receiving the Prednisone. Therefore even if you gradually taper, it will take your body awhile to get its natural production of cortisol back up.
  • Joint pain: It is extremely common to feel pretty intense joint pain when you stop this steroid. This joint pain is caused by lack of natural cortisol production. In some cases it could be due to inflammation during withdrawal. Avoid excess physical stress and activity until the pain subsides.
  • Low blood pressure: Some individuals experience blood pressure drops when they discontinue this drug. Although it increases blood pressure while taking it, many people experience rapid reductions if they discontinue too quickly. In some cases if blood pressure gets too low, it can lead to dizziness and fainting. Be sure to monitor your blood pressure when you quit this drug.
  • Low blood sugar: Many people experience low blood sugar when they come off of a corticosteroid like Prednisone. You may want to monitor your blood sugars when you discontinue and keep some sweets around in the event that it dips out of the ordinary.
  • Mood swings: People feel fatigued, low energy, and have depression as a result of their withdrawal. It is no wonder that some individuals experience mood swings and/or changes when they quit taking this drug. Just know that these should stabilize when the body heals.
  • Muscle soreness: Some people notice muscle soreness and/or pain that does not go away for an extended period of time. The best thing you can do for yourself is to take some sort of over-the-counter pain relief to help yourself cope with this symptom.
  • Nausea: You may feel extremely nauseated when you originally stop taking this drug. The intense nausea should only last for a few days and then gradually improve. Assuming your doctor conducted a gradual taper off of Prednisone, the nausea should not be long-lasting.
  • Shaking: Many people have reported uncomfortable “shaking” in the limbs including the hands and feet.  This is not as common of a symptom, but one that has been reported that can make life uncomfortable for awhile.
  • Skin rash: In some cases a person may develop a skin rash when they first quit taking Prednisone. Some hypothesize that burning and/or itching skin could be a result of nerve irritation beneath the skin. If you are experiencing a skin rash or irritation, just know that it’s likely from the withdrawal.
  • Suicidal thoughts: When you first quit taking this drug, you may notice that your depression becomes overwhelming to the point of triggering suicidal thoughts. If you feel suicidal at all during withdrawal, make sure you talk to a professional about it. Just know that as your adrenal stores build back up, your depression will gradually subside and your thinking will return to normal.
  • Vomiting: Some people report vomiting when they stop Prednisone. This vomiting is usually a result of tapering too quickly and not giving your body a chance to gradually adapt to functioning without the drug. If you are vomiting, it could just be that you are hypersensitive to withdrawal and/or are withdrawing too quickly.
  • Weakness: It is common to feel muscle weakness and an overall sense of malaise when you first come off of this drug. It should take your body a few weeks and/or months to fully recover from feeling very week and achy. This is just your body’s way of reacting to functioning without a drug that it has received constantly over an extended term.
  • Weight loss: Individuals that are on Prednisone for the long term tend to pack on a pretty good amount of weight. Obviously the amount of weight you gain will be based on your individual circumstances. Most people notice that they begin to lose weight a few weeks after they have fully discontinued this drug.

Note: It is thought that Prednisone stays in your system for less than 24 hours after your last dose – meaning it has a short half-life.  Discontinuation symptoms are thought to be a result of the body attempting to recalibrate itself to functioning without the Prednisone.

How long do Prednisone withdrawal symptoms last?

The time it takes you to fully withdraw from Prednisone will depend on individual circumstances. In most cases, the withdrawal symptoms should clear up within 3 to 4 weeks after your last dose. The half life of Prednisone is only 1 hour, but most people report post-acute withdrawal symptoms lasting well after the drug is cleared from the body.  A full recovery can take anywhere from a week or two (lower doses) to several months.

If you are experiencing pretty extreme pain as a result of the withdrawal, be sure to take some over-the-counter pain relief. In addition to OTC pain relief, most people recommend increasing the amount of salt and sugar that you eat. This is because when you stop taking Prednisone, your body usually has low blood sugar and low blood pressure.  If your withdrawal symptoms persist for an extended period of time and/or are so severe that you cannot function, it is likely that you withdrew too quickly.

Anytime a person is on 5+ mg of Prednisone for 7 to 14 days, sudden discontinuation can result in an adrenal crisis. Work closely with your doctor, follow guidelines, get plenty of rest, and lay low as your body and mind recover. Eventually you will return to normal functioning once your body and brain readjust to functioning without steroids.  It should be noted that some people report “Secondary Adrenal Insufficiency” as a result of taking corticosteroids like Prednisone.

In this event, it has taken people 12 to 24 months before they experience full “recovery” back to homeostasis.  As was mentioned, the longer you are on the drug, the more gradual the tapering process should be and the longer you should expect withdrawal symptoms to persist following your last dose.  As long as you work with your doctor and withdraw VERY gradually, you should be able to experience a full recovery.  If you have experienced withdrawal from Prednisone or are currently going through withdrawal, feel free to share your experience in the comments section below.

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  • a July 26, 2014, 7:04 pm

    was prescribed 60mg of prednisone for 10 day then was to tapper off for a concussion. By day 4 I felt as though I was coming apart on a molecular level. (Like Sen. Kelly in the X-Men movie when he exploded into a liquid) By day 5 my joints, muscles and bones hurt like I had been running on pavement for hours. By day 8 called Dr in a whirlwind of emotion and hormonal vomit for lack of a better word. He had me stop with no tapper and I feel horrible. Seriously hope these effects do not take months to stop

    • Darlene September 22, 2014, 8:16 pm

      I have also went through “short term” prednisone withdrawal hell. What a nightmare. It has been 4 weeks since I stopped . I tapered a few days earlier as I couldn’t stand to be on it. I ended up in Er with prednisone induced gastritis that messed me up amongst the other problems it created.

      All because of poison oak!!!! I regret EVER taking it. I wander if I will ever be back to normal and if so WHEN? I lost 12 lbs in less than 2 weeks due to not being able to eat and being so nauseous with diarrhea. I thought I was dying. I had the shakes coming off MAJOR amplified anxiety. I cannot believe doctors are so in denial about the after effects of this drug and what it really does.

      NEVER again. I also had to take a shot and a 5 day course which ended up being a 4 day course because family doc would not prescribe a few more pills over the Urgent care’s script. Then they had me do the 12 day taper that I ended on day 8 due to problems being on it. I also peed a lot and it made my bp go up. What an evil drug.

      • Hilary September 24, 2014, 2:11 pm

        I am going through the same thing, and I just figured out it was prednisone that was causing my issues. I had gotten stung my a caterpillar and was covered in hives. My rheumatologist gave me a 5 day Medrol pack to stop the itching. It worked, but I have been having nighttime tremors throughout my body and now bad pain in my neck, ear and skull. I feel terrible. My anxiety level is high, due to worrying about my health so much. I feel like I am dying inside.

        • Boost November 11, 2014, 9:36 pm

          Going through the same thing. My anxiety level is high also. Glad this site is here for us prednisone users to share our experiences. I feel a bit better just by reading others posts. Wishing you all the best of health.

        • Pippa August 9, 2015, 9:13 am

          Hi Hilary, I realize this was a long while ago but I too have been experiencing bad withdrawal effects. Did yours ease with time?? My worst is the tremors :(

          • Janice Bloodworth June 27, 2016, 9:45 am

            I too suffer from tremors especially durning the night. Plus rapid heart beat, down to 3 mgs a day but still suffer the joint pain as well. Cannot wait to get off this drug but it is a long drawn out slog! Would love to throw PRENISOLONE out but I know the consequences. Hope you soon feel better. Wonder if it will ever go away!!!! And to feel normal again.

          • Rob July 22, 2016, 9:44 am

            You guys have it easy. I have severe ulcerative colitis. Been on mega doses if Prednisone oral, plus 4 hospital stays from January to May getting IV solution medrol in higher doses.

          • B September 13, 2016, 3:11 pm

            Janice Bloodworth, I see your comment is more recent than most. I too am having tremors and rapid pulse, along with debilitating dizziness. I was on Prednisone for three months, off now for one month. Can you update on how you are doing now? I would be grateful to know.

        • Margaret Cremin October 27, 2015, 10:22 pm

          Same here, I have just finished a 7 day course of medrol 5mg twice daily with no taper, at the moment I’m feeling depressed,weak, anxious, can’t seem to stay awake as well thank goodness I’m not alone. Thanks Lovely People.

          • Jeff January 18, 2016, 7:04 pm

            Thanks for sharing, I have never felt so strange. I had a rash we thought was poison ivy. I saw doctors at the er and my primary. On and off the prednisone for a couple weeks. My rash unknown is drying up. But I feel a ton of anxiety! Never felt so emotional before. When I get stressed my throat tightens up and makes me panic. It sucks. Feel like I’m losing it! Any advice?

          • Brie January 20, 2016, 4:41 am

            I was put on Medrol for 7 days, 4mg tabs 4-6 times a day! It was a taper off pack, and I stopped two days ago. While on it, I had insomnia, MAJOR anxiety, jittery feeling, off and on nausea, weakness, and dizziness. I was so glad I finally got off, but the day after I was awoken at 4 A.M. feeling jittery, nauseous, and weak again.

            Then tonight around 8, the same thing! I also keep having a weird tight feeling in my throat – and maybe it’s like someone else said, a reaction to stress & anxiety. I had NO idea all these symptoms were possible, and I certainly wouldn’t have taken it just to clear up fluid in my ears.

          • Dru April 16, 2016, 4:19 am

            I’d been on Prednisone due to severe RA since Dec. & still had flare ups. I thought it was silly to keep taking it & still in pain. The Dr. never mentioned withdrawal. I’d been on a Z-pack several years ago for hives so I knew to taper off. Up until a week ago I’d never heard of steroid withdrawal & thought all the pain, fatigue & even moodiness were due to the stress of selling my home moving from DC.

            I’m now trying homeopathic remedies like turmeric, hemp, flax & chai seed, & melatonin (for sleep) It’s been 4 weeks but it still feels like the Spanish Inquisition is having a party & I’m the guest of honor.

          • Dawn June 29, 2016, 9:32 pm

            Feeling awful on a 5 day “prednisone burst” for respiratory infection. Five days 40 mg with no taper. The last last time I was on it was a pack with decreasing dosage each day. I felt great. This new dosage is not for me at all. Never again.

        • Brian Munson June 4, 2016, 11:13 am

          My doctor had me on 40 mg a day for seven days. No taper. The prednisone was for spreading poison ivy. It turned out to be ringworm and of course the prednisone made it 10 times worse. The cure was some simple over-the-counter antifungal cream.

          My withdrawal symptoms began 2 to 3 days after I stop the prednisone. It has been three weeks and I still have muscle joint and tendon pain. The anxiety was high and I thought it was going to jump through my skin. That has passed but the pain is still there.

          Unless I am dying I’m never going to take this drug again.

          • Cindy June 23, 2016, 6:32 pm

            My doctor put me on 60 mg for a week, then 50, then 40. I was supposed to do this til I got to 10 mg. I didn’t make it past 40. I was so paranoid and couldn’t hold a normal conversation. Then I felt like I was falling apart. I started crying and couldn’t sleep or function. I ended up on 2 different depression pills that helped me calm down. I just got off of 4 & 1/2 months of starting out on 20 tapering to 10 every other day. Wow it made me extremely moody. Now I get to go through withdrawal. Has anyone went through this?

          • Kathryn Moore September 30, 2016, 7:52 pm

            I too am tapering off a two week plus dosing. Started with a medrol dosepack. Then because of reoccurrence of asthmatic bronchitis went on Prednisone 60 times three days, 40 times 3 days and finished 20 times 3 days today…feel exhausted other descriptions..depleted, drained, lousy. Also had leucocytosis, a high white blood cell count, due to the Prednisone.

            Just got up from an hour and a half in bed napping. Hardly feel like I can accomplish anything…too tired. Am going to try taking AirBorne tab in diet ginger ale now. That seems to perk me up…not sure why. My heart goes out to all writing here especially if you must work or look after others.

            I am retired and have simply stopped my activities such as singing in a choir and caring for grand kids. Hoping time will heal me as well as all coping with this withdrawal from these drugs.

      • Elaine Herrick July 24, 2016, 6:45 am

        I have been on Prednisone since January first 40 MGM’s then weaned off. My kidney is messed up and my levels got higher so I had to get back on it. This time it was 60 mgms for almost 3 months. I’m down to 20 mgms for about 6 more weeks.

        I have been sweating a wicked lot and a couple times coughing in the morning and not being able to catch my breath. Like asthma. Has any one else experienced this. I hate this drug. I’ve cried and been so emotional the whole time and it really sucks. Could really use some feedback. Feeling alone and damaged.

        • HH August 26, 2016, 2:24 pm

          Elaine, hang in there… I have severe Ulcerative Colitis and have been on the Prednisone roller coaster for YEARS. Haven’t been ever able to get past 10mg without going back to a flare and going up to 40mg and now this year, 60. I am tapering down to 5o mg a day right now. My cheeks are fat, my stomach is a round belly, I sweat like a dog at night with night sweats, I will get moody and cry for no reason, I am extremely weak, low energy and fatigued. It SUCKS.

          But, what doesn’t suck, is me having bathroom accidents 10x more a day with severe pain that makes me want to die! Sleep as much as you can, that is how your body heals, look into supplements, eat healthy, and do NOT beat yourself up if you can’t get everything done every day. Slow, patience and be gentle with yourself. These bodies are a pain in the ass, aren’t they? Ughhh. Ready for the robot body.

          • Nikki October 30, 2016, 3:17 am

            I also have severe UC and am tapering off steroids that I’ve been taking for 3 months now. What is up with the night sweats?! I get up 3-5 times a night to change my clothes!

        • Patty Legaspi September 28, 2016, 5:23 pm

          As you can see there are a lot of people sharing the same problem as you here, so don’t feel alone. I too have been taking prednisone 7 mg. for a couple of years now, along Cellcept 500mg for 3 times daily. Both drugs supposed to have horrible side effects on you and I’ve been so lucky to only experience a few of them.

          Like you I have a dry cough, night sweats once in a while and some shortness of breath, but I think that’s all I can think of. I’m more afraid of the long term effects Cellcept will have on me, but my doctors refused to get me out of it because they’re afraid my lungs will start creating scar tissue again. All I can say is that God is the main source of my energy and He is the one that has been able to get me through all of these.

          Also, maintaining a positive attitude along eating healthier and exercising as much as possible really helps. When I feel tired I rest, and every chance I have I take a little vacation. Through it I’ve been able to continue working and keeping up with home and family. I can only thank God for His merciful love and help. I hope this helps and I hope you too can rest in Him. He won’t let you down.

          • Kristen October 13, 2016, 3:48 am

            I just had to comment on your wall. You gave me SOOO MUCH HOPE! I KNOW THIS SOUNDS CRAZY AND MAYBE A LITTLE IRRELEVANT to what you are going through. First off thank you for mentioning that you could f do it without God I needed to hear that so bad! It was an inspiration to here your story.

            This is going to sound crazzzzy but today was only day 3 of me taking 40 mg of prednisone BC of pain in my head and fluid behind my ear. Long story short I had to call 911 today as I broke out with hives everywhere and could not stop itching (and I mean crazy insane itching), following my mouth doubled in size, as well as my eyes swollen shut.

            I’m supposed to go down to 30 mg tomorrow but I don’t think I can I’m praying this medicine does not wreak real havoc on my body. You’re an amazing person! Stay strong!!! Thank you for your support! God bless you! saying a prayer for you now!!!

          • Lorna November 22, 2016, 3:02 pm

            Hi Patty. Sounds like you are a Sarcoidosis sufferer like me. I’ve been on 7mg of Prednisone daily and Methotrexate once a week. Finally I’m being weaned off the Prednisone, decreasing the dose by 1mg each week. My last dose is New Year’s Eve. He’s still kept me on the Methotrexate though. I find I’m having stomach issues and muscle aches during withdrawal. I’m looking forward to getting rid of this moon face and extra weight.

        • GiGi October 17, 2016, 11:23 pm

          Hi Elaine! YES! Same here. I’ve been on Prednisone for 1 year due to a rare severe and chronic autoimmune illness. My dose was low we went anywhere from 10mg to 40mg depending on symptoms all year.

          My Dr started reducing my dose in Sept and I just reduced down to 7mg per day starting today. Anyway, I’ve been sweating like a farmer working the fields at high noon in the fields of Texas!! Ahh!! It is SO gross! It doesn’t help that I’m already missing my ovaries (surgical menopause), and my thyroid had to come out 3 years ago due to my illness. Ovaries, thyroid or Prednisone alone can cause excessive sweating. All THREE?? Holy Heat Batman! LOL!

          Also, each time we reduce my dose (reducing by 1mg every 2-3 weeks) I have a weird deep random cough and shortness of breath. Oh, and the titer process has my stomach a little bit unsettled and I’ve had GAS! So yes – I CAN relate so please don’t feel alone and damaged. :( Prednisone really is a Deal with the Devil…it saves A LOT of lives and did give me back my quality of life in many big ways.

          The first 10 months I was on it my side effects were mostly bruising and dry skin. Then, the dam broke and I suddenly gained 16 pounds in 2 weeks out of nowhere. This weight gain has upset me the most because I was always slim and non of my clothes fit right now. TG I am single right now…really. UGH!!! Oh and I cry randomly too. Fun with steroids! :D

          • Lourdes November 27, 2016, 4:33 am

            Hi, I also took prednisone for 6 months at 70mg, and Methotrexate. I am down to 10 mg of prednisone and am feeling much better, but now with new withdrawal symptoms (restless legs, joint pain, tired) reading your comments helped a lot. Thanks.

        • Kevin Hunt November 27, 2016, 6:29 pm

          You’re not alone. I have been on this drug for 8 months, about 5.5 months on 25mg and 2.5 months tapering off now on 3mg. Once I got below 7.5mg the withdrawals really started and below 5mg worse again even though I am reducing slowly. I am very irritable, anxious and depressed, when will this ever stop? I hate it.

          I have never felt like this before. I am so lucky my girlfriend has the patience of a saint because I would be horrible to live with at the moment. The smallest, little things piss me off and I way overreact, but I don’t realize I’m overreacting until much later. The pain is also terrible I feel like a 90 year old man but I’m only 48.

          The experts say this will all eventually go away but I could still be like this for another 3 to 4 months yet, it’s hell it been hard enough working part time and no energy left after work to do anything fun which leaves me bored and depressed. It’s a horrible drug but I was in so much pain before they put me on it I kept ending up in ER. You don’t appreciate good health until you don’t have it.

    • Brian June 19, 2016, 3:17 pm

      A, how long did your withdrawal from prednisone last?

      • Sue July 30, 2016, 8:05 am

        Thanks Guys – been on 25mg for 5 days then 50 mg intravenously for 2 days then 25 and then 50mg!! God thought I was going to die!! Back down to 37mg after the anxiety etc turned me into a nut bag. Now tapering to 20 mg and feel like I am going to turn into a psychopath. Nails are like split revolting talons, skin is developing horrible raised brown spots, feel like hell. 5 weeks of this, please say it gets better!!

    • Holly October 13, 2016, 2:08 am

      I have been on high dose Prednisone for over 15 years. They can’t get me off of it. My breathing issues get much worse and every joint in my body is screaming. I just went down to 13mg and will stay on that for about 3 weeks. Things end up getting so bad, they bump them up again. I’m determined to get off of them, but it is going to be a long road. I don’t want to get started on painkillers, so will tough it out as long as 8 can. Good luck everyone.

  • TDM August 23, 2014, 11:05 am

    Prednisone is poison. You will find doctors out there and online who continue to say that it is a perfectly wonderful drug for many things. I was given Prednisone for poison oak. I already had severe PTSD from a horrific trauma. I told the nurse practitioner and she told me there were “very few side effects” to prednisone. This is a lie. When I told my allergist this, she told me that there are so many side effects to Prednisone, they don’t even know what they all are.

    She told me that someone like me should have been warned and that my Psychiatrist should have been called immediately. Instead, I was given a muscle relaxer to take three times per day and had to take more of my anti-anxiety than normal. Even with those things, this has been a nightmare. I have thought about suicide, it is so awful. I will never touch this drug again. I am thinking of having every part of my landscaping removed so I can never come in contact with poison oak/ivy again. Prednisone hijacks your central nervous system.

    If you continue to search and see what HUMANS say instead of these doctors who are obviously getting kickbacks for giving us this poison, you will see that the incidents involving mental and physical breakdowns from this stuff is far higher than 5%. Do not take this. If I was ever in a health crisis and told to take prednisone or die, I would choose death. While withdrawing, I am having worse PTSD nightmares than I have ever had.

    • Beverly Galante August 30, 2014, 9:34 pm

      TDM, I just read your post again. I think that you could have taken mucho doses of Vitamin C for your allergy to poison oak/ivy. I’m so sorry this doctor was stupid enough to give you prednisone. I had a severe allergy to a medicine given to me at a hospital for a problem that they caused. I broke out like a Christmas tree. My husband called my naturepathic doc and he prescribed heavy doses of vit. C and it was gone in 3 hours. Let me tell you, I was BAD! It had me screaming into a pillow until finally the vit C kicked in. I hate doctors. I think that unless I am dying, I will just keep going to my naturpath. I take suplements now. I pray my symptoms of muscle pain, join pain and stomach aches go away soon. And good luck to you. Please know that even if I don’t know you, that you are loved. And don’t worry, you will get your health restored very soon.

      • Laura March 25, 2016, 4:39 am

        Thank you all so much for posting your experiences. I really have felt like I’m going insane (although logically I’m trying to think my way through this crazy mania). I’m experiencing several of the side effects including a full blown panic attack today. Achy body, depression… this is the worst. I describe it as feeling like fear and loathing in las vegas is going on in my head. Complete chaos. Reading these other experiences helps. Beverly you are loved too! Thank you.

        • Shannon April 24, 2016, 6:00 pm

          I am currently in the throes of hell coming off only one week of prednisone. Took 50mg a day for 7 days and felt really hyper and lightheaded with racing jumpy feelings. Day 2 of no drug and was not tapered and I am feeling crazy. Anxious and irritated like crazy sore muscles and spasms, winded and breathless at the slightest movement.

          • Muriel June 24, 2016, 12:01 pm

            I was prescribed 20mg per day of prednisone for a mystery rash and stopped cold turkey after 5 days. This stuff is horrible! Never again! I thought I was having a breakdown. Jittery, angry, and out of control paranoid. I have never been on this poison and will never go near it. The allergist said I must be very sensitive since she gave me such a low dose.

            Can’t understand why I wasn’t told of the horrific side effects. It’s been two weeks and I still feel a little strange but definitely better. My advice – run if a doctor wants to give you this evil drug unless it’s life or death because you will suffer! Also, I still feel like the water weight has not gone away and I am fairly slim but it’s mostly in my stomach. Another wonderful side effect that is holding on!

    • Darlene September 22, 2014, 8:19 pm

      I too went through hell from having poison oak and being put on this prednisone garbage. It has messed me up. The doctors are idiots and think a short term course does nothing. I ended up in the ER from prednisone induced gastritis and weigh less now than before I started that evil drug from being so sick and not being able to eat after coming off and diarrhea. NEVER again.It has been 4 week and getting better but I am not myself as I was before. I had major anxiety and thought I was dying and still wonder if I am.

      • Andrew September 24, 2014, 7:28 pm

        Darlene,

        I feel the exact same way you feel. I was on this drug for two weeks. And had to stop because of anxiety. I have been off for a little more than two weeks and still feeling crazy. I haven’t slept right since I stopped. I also lost weight on this drug not gained. Bless you!

        • Darlene October 1, 2014, 4:15 pm

          Andrew, I hope you have gotten better. I am still trying to get back to normal if that is ever POSSIBLE. It has been 5 1/2 weeks since the last pill was taken. I wish I could find a doctor that believed Prednisone was the devil’s pill.

          • Andrew October 20, 2014, 3:29 am

            Darlene, How are you feeling now? I have been off for 5 1/2 weeks now and still not back to my self. I have spoke to many people who had the same reaction we did. They said it takes time but you will be back to normal. I mainly have anxiety/breathing issues and feel tense at times. Hope you feel better! Bless you!

          • Dee Sweet April 8, 2015, 4:36 pm

            Darlene and Andrew! Thank God for people willing to share how they feel with others! I have been off this EVIL pill for 4 weeks+ and still feel so horriible – though sometimes I feel not so bad than other days. My MD says I don’t know what I am talking about, but I will NEVER take this again – I don’t care what happens to me, nor will I ever allow anyone I love to take it. It is from the devil I am sure. I am praying all day, every day, that you guys feel better soon. Pray for me! I need every prayer I can get. xoxx God bless!!

          • Mary July 10, 2015, 3:13 pm

            Darlene or Andrew, almost a year later, how do you feel? I last took prednisone in March 2015 (a short, but high dose course) and still have anxiety issues that I’m dealing with everyday.

          • JJ March 15, 2016, 1:47 am

            Hi Darlene, Curious to know how you are feeling now and how long it took for you to get back to normal? Did you do anything to help with the process??

          • Michelle June 9, 2016, 1:47 am

            I have been on 5mg prednisone since diagnosed with RA in 2009. Haven’t been off no longer than 2 weeks at any given time. My doctor retired, and the new doctor on my second visit said sorry no more prednisone. The next words were this is the devils drug. Well I am in hell now and would rather die than feel this way.

            I am only 4 weeks into withdrawals and I definitely do not see the light at the end. I am scared to death, when this will be over!!! If given the option prednisone again or death at 46 I would choose death. I have never dealt with anything like this before, I could not put it into words if I tried 😥😥😥.

          • Jack June 12, 2016, 3:56 pm

            There are so many negative experiences that I feel I just have to share mine. I tumbled upon withdrawal symptoms for prednisolone by mere chance, so many people without symptoms will never even seek or find this place. I had a severe case of colitis ulcerosa where they considered to cut out my colon. I had lost all my iron deposits in my body and had lost over half my blood.

            First they gave me 75mg prednisolone for 3 days, it helped slightly. So 4 more days. They discharged me. Then 7 days 60mg, then 50mg and 5mg less every week.Now, two months after currently at 10mg, what have been my side effects? Extreme hunger in the beginning, not so much now. I had lost a lot of weight because of the blood loss, so I gained 10kg (which was good) due to the increased hunger.

            I’ve gotten some acne which sucks a bit, but it sure beats getting your colon cut out. I probably have been a bit moody, but nothing some self control and saying “sry I’m a douche” won’t fix. Again, beats getting colon cut out. Maybe I’m slightly tired on just 10mg?

            I cant tell for sure, I used to nearly have no blood and couldn’t walk up stairs without nearly dying, and I’m 28 years old male, who was normally fit before. So from 75mg to 10mg my side effects have been very acceptable, thinking what it did for me. Prednisolone is a steroid yes, it’s a wonder drug really, a last ditch effort.

            If they use it in high dosage, its usually because the other options are very unappealing. It might have saved my life really.Feeling a little sucky in the process after is completely acceptable. And sure beats sh#tting blood 15 times a day before.

          • B September 20, 2016, 8:01 pm

            Michelle, could you give us an update as to how you’re doing now? Would be grateful to know, looking for hope in my fifth week of withdrawal. Endo and ER have washed their hands of me. They don’t believe this is possible at this point.

        • Leigh November 5, 2015, 4:30 pm

          When did you start to feel better? Just want to know there is a light at the end of the tunnel.

          • A 55 YR Old Grandma November 26, 2015, 8:55 pm

            I would like to know about a light at the end of the tunnel myself. Have been going through the on/lower Prednisone game for about 5 years now and its literally killing me. I have been on a 15mg a day routine to try to control Rheumatoid Arthritis because no other drugs will work for me after some 13 years of suffering. In the last 2 months I have been on my “regular” 15mg a day and then due to RA flair ups this amount more: 2 courses of 60mg to 0 taper over 10 days, 2 IV’s of it at ER 60 mgs, 2 shots into joints just a week ago, and now I am trying to stay at only 10 mg which is is 5 less then my usual dose for the RA.

            I had never realized before what my ups and downs on steroids was doing to me, and why, what was going on in my body physiology that caused all of these side effects. I thought I was just crazy with all of these symptoms and I am sure husband thought I was also over the years. Even with all of the “extra” doses of steroids to treat flair ups I always had to stick to the 15mg a day to somewhat control the RA and be able to move somewhat. Then I was suffering all of the side effects, and withdrawal effects. BOTH OF THEM!

            It has been so helpful to understand so much reading this article and thank God I found it and all of your comments. All of you are short term users of steroids and have all of these effects, and I cannot imagine if I run across someone like me on it for so many years, or even just how much I have had the last 2 months, and read their story.

            I just know its Thanksgiving and no one understands why all I can do is curl up freezing to death, sweating till I saturate my bed, sleep, dream, cry, hurt, stomach, well every symptom up there. And I need to go and make the stuffing! I hope you all feel better now and I hope there is someone to say that its all over, no more side effects, no more withdrawals.

          • Andrew January 7, 2016, 3:22 am

            Dee, Mary, Leigh, May God bless you all. I am 110%+ back to normal. It took about 9-10 months for my body to fully recover from this drug. I learned a lot about this medication through my experience. I can assure you all there is hope for you. Even when you are at your worst. It just takes a very long time for your body to reset after taking this med. You are all in my prayers. Bless you! If you have any questions please feel free to ask, due to my experience and knowledge gained through this time I periodically look back at this form just to pray for people going through what I went through.

          • Gary April 15, 2016, 2:39 pm

            Hi…I just came off of a 10 day, 50mg (once per day) diet of prednisone to help combat a moderately severe asthmatic bronchitis. The condition cleared up and I am thankful for that but now I think I am showing signs of diabetes. Dry mouth, peeing quite a bit(and long pees), blurred vision (yesterday and today), and generally just a very odd, somethings just not quite right feeling.

            I’m a shift worker so I feel quite tired most of the time anyways. I will be going in to have blood tests done to see what our going on. The first time I took a prednisone I read about it afterwards..I was stunned at the long list of potential and serious side effects. I wanted to stop taking them immediately but I had bigger fish to fry that needed healing. I am 2 days removed from taking my last pill. I hope these ugly feelings go away.

        • Denys January 10, 2016, 8:42 pm

          Hi Andrew, Do you know whether DEPO-MEDROL causes similar side effects? I was given 40 mg on Nov 13, and 4 mg decadron. Even though I run a mile or two almost every day now. I still have some issues: tremors, agitation, pressure drop… Any knowledge on that? Thank you. -Denys

          • Ana July 6, 2016, 1:40 am

            I was treated with methylprednisolone for 14 days also for an asthmatic bronchitis. I immediately noticed the rapid heart beat and decreased energy level. I’m done with the treatment but today I dealt with tremors and muscle aches. It’s been pretty painful. No energy either. And have even noticed a drastic change in libido :(… can’t wait to feel like myself again.

        • JJ March 15, 2016, 1:48 am

          Hi Andrew, I have so many questions. Experiencing the same symptoms. It’s been nearly 3 months since I received a high dose of prednisone in the ER for anxiety. What did you do to help you recover? Did it just occur spontaneously?

      • Dennis February 27, 2016, 12:56 pm

        I agree prednipoison is poison. It should be outlawed but since the pharma mafia runs the country, it will continue to be prescribed like candy.

        • Doug March 11, 2016, 2:52 am

          I just wanted to add some balance to this conversation. I was mostly bedridden before my reactive arthritis was identified and I was put on steroids. My symptoms improved with each dose and within 24 hours I saw significant improvement. I agree that the side effects are awful, especially for some.

          But without this drug I might have to deal with weeks or months more of being limited mostly to residing on my posterior. And that’s with two little kids to take care of. I’m very grateful for Prednisone. I’m also grateful for getting off them after 5 months of treatment and tapering. Hopefully it won’t be 5 months before I’m free of the withdrawal symptoms!

          • Jennifer Youngblood May 4, 2016, 4:27 am

            Doug- I agree with you. I have had literally no other options than to be on corticosteroid treatments long term, on and off, due to pulmonary & immune conditions. People who have Not ever had to experience NEEDING this medicine Long Term in order to survive do Not understand the PROS are obviously going to outweigh all the cons.

          • Q. Javon Overton June 1, 2016, 3:23 am

            I too was diagnosed with Reactive Arthritis. I was put on Prednisone for 2 and a half years to help control the Arthritis, as well as a number of other ailments that were caused by a Sulfa drug reaction. I am far too familiar with all of the symptoms that you all are writing about. The other thing that Prednisone did for me was eat away the Femoral head of my left hip.

            So while I was suffering from the side effects, I had to prepare for a hip replacement. I agree with many of you that this drug should be outlawed, however, there are some of us who would have suffered greatly without the miracle it can perform on some illnesses. It has been three years and my hip still bothers me a great deal.

            Prednisone is a two sided coin. One bearing the face of a patron saint, and the other a blazing image of Satan himself. I wish you all blessings and well being. It is a tough situation to be in. Seeking help and finding a long period of chaos as a result. I’m praying for you all.

          • Piper June 25, 2016, 5:59 pm

            I agree, only thing that. Gets me up and moving. Been on it off and on since I was 42. Today I want to play golf. So in order to get my hands to work I take 20 mg. Tomorrow I go back on 5 mg. It’s the only way I have a life. I suffer from RA and asthma. Prednisone saves my life.

        • Tanya March 25, 2016, 11:24 am

          I’m so happy to hear these stories of short term use. I was prescribed this cursed medication from Satan in January short term for a week 60 mg. I had the several withdrawal symptoms every evening, I would tell my spouse,” Here comes the stomach cramps.” And proceed to roll on the couch with pain. Not to mention the Anxiety, it’s March I still suffer with panic attacks and I’ve not had a normal nights sleep since.

    • C.P. October 6, 2015, 10:04 pm

      That is awful. I have a mental disorder and am just getting off of this drug and felt suicidal out of nowhere as well. I use EMDR to treat my disorder, which was developed for PTSD. Though this probably will not help with nightmares, as I sometimes have nightmares on the days I do the EMDR while the feelings are being processed, but I feel very good the next day.

      • melissa March 8, 2016, 12:42 pm

        Reading all these stories makes me realize I’m not crazy!! I have been sick for 4 months now. Am 31 years old and had a clot in my lung and both my legs. After months of tests we find out I have streptococcal reactive arthritis from a strep infection. I have been on 10mg of prednisone for the past 3 weeks and have never felt so sick in my life.

        I am being tapered off it at the moment but I feel like I need to just stop cold turkey. I get the worst shakes, heart palpitations, nausea, light headiness, breathlessness and the list continues. I have now been put on methotrexate also. I will never ever recommend prednisone to anyone it is the worst drug I have ever taken in my life.

        • Dru April 16, 2016, 4:42 am

          Melissa, please don’t go cold turkey. Even though I went off the crap slowly I think I should have gone slower. I haven’t slept more than 4 hrs at a time in over 3 wks. I also get shakes, mostly my legs & so dizzy & sick.

          I’m sure we’ll all make it, especially knowing we’re not all a bunch of weaklings who simply won’t “suck it up”. As bad as the pain from RA & withdrawals is I think the deepest pain is people, even loved ones, simply not understanding. Keep the faith, kindred spirits!!!

        • Vivian November 28, 2016, 7:45 am

          I’ve been on this for 3 days and I’m quitting especially after reading these comments. I was prescribed after having an allergic reaction to something that made me extremely itchy. Today had the rapid heartbeat, anxious, dizzy feeling followed by a rash that looked like welts. I am a fitness professional and my life is physically demanding. Ugh! I regret not researching this prior.

    • Marcy January 3, 2016, 2:25 am

      I would NOT recommend Prednisone. I was prescribed over the holidays, though doctors were not sure of my true health conditions. Terrible stomach and intestines cramps, that ruined my life, from Thanksgiving until the New Year. I would not take, or recommend this medicine. I’d rather pay more, and go for a more natural alternative.

    • Jennifer February 1, 2016, 9:00 pm

      I thank you so much. I have PTSD and I am calling my psychiatrist right now. I am on day 3 and I am losing my mind. He will be able to help me, hopefully.

    • Chris May 16, 2016, 3:43 pm

      I was on it for 6 days. 7 pills first day then tapered off to one. Two days later I was in the ER with an anxiety attack that I thought was a heart attack. Feeling crazy anxiety and depression for two weeks now. Cannot sleep feeling like I’m dying. My doctor prescribed it for arm pain. Really would like to take legal action but probably not worth it.

      • M.F. October 8, 2016, 6:10 pm

        Chris, I was also on the 6 day dose pack, but stop after day 5 after going to the ER thinking I was having a heart attack. I am now 3 days past my last dose, and still have nausea and lightheadedness in the morning. I was finally able to get more than 2 hours of sleep since starting the pack. How long did it take before you started feeling normal again? I am so very frustrated… I will NEVER take this again.

        • M.F. December 5, 2016, 6:03 am

          This is an update. It has now been 2 months since my last dose. Since then I’ve been to the ER once, seen my family doctor 3 times (all tests normal) and had several tests done at my Cardiologists (including stress test, echo… all normal). My latest test from my OB was an FSH, which the reading was 129.2… Full Menopause!

          I also have new food allergies which surfaced a month ago; these are either menopausal allergies, or caused by adrenal fatigue (both caused by the prednisone). I am praying that these will go away once my adrenals recover. I am STILL dealing with moments of fast heart rate, palpitations, and sleep problems.

          I may be sleeping 5-7 hours a night, but I still wake up several times a night. I have also become very sensitive to medications. I may be feeling better, and finally getting back to my regular routine… I still have a way to go before I feel normal again… all this after taking these pills for 5 days. Prednisone is now on my record to not give again.

    • Chalyscia June 6, 2016, 2:28 pm

      I agree. I will never take prednisone again. My doc said it was the only option for ulcerative colitis. Bull!! I have been referred to a gastroenterologist. I hope he has some different plan. Coming off prednisone is horrible. Tired. Anxiety. I can’t stand the feeling!!!

      • Steven Patterson July 12, 2016, 6:49 pm

        Ulcerative Colitis can be cured by good probiotics and diet. Please read Jordan Rubins book The Makers Diet.

    • charlene June 20, 2016, 9:58 pm

      I have severe uncontrolled Asthma, Chronic Bronchitis and Emphysema in other words I have COPD. I am on oxygen and I have what are called flare ups at least 6 times a year. I go on prednisone then to clear up the inflammation in my lungs. I have no choice I have to take the prednisone or I will die and I am not ready to die yet. I only have a few more years left on this planet before my lungs will give out and I am only 49 years old.

      I normally start off on 10 mg 5 or 6 pills the first day for 5 days and then I go down to 5 pills for 5 days then 4 pills for 5 days and so on until I am down to half a 10mg pill for 5 days. I have never had any withdrawal symptoms until this time. They do not seem to be as severe as some of you, but they are severe enough when you can not breathe and you have other health issues. I am not for sure why this time after 30 years of taking this drug at least 6 months out of every year that I never had withdrawals until now.

      I have made an appointment with my Dr. to find out. I wish you all the best of health and I hope you can find something else to take instead of the prednisone.

      • Lpete September 4, 2016, 5:22 pm

        I am going on my 3rd year of continuous steroid treatment. Have been as high as 160mg in hospital and as low as 5mg one day 10mg next day, for treatment of severe asthma. Every time I get to 5-10 mg I can’t breathe! I have no other option than to up my prednisone and use my nebulizer. I feel like it will never end. Don’t even recognize myself in the mirror. Very depressed. Hope and pray I will be normal again…

    • HH August 26, 2016, 2:29 pm

      That’s ridiculous, prednisone is super cheap, and ALL of my GI doctors try to get me to not take that and take the expensive, designer drugs like Remicade and Humira. They are not getting a kickback from prednisone, LOL.

      • sb November 4, 2016, 6:51 pm

        True. Doctors are not getting kick backs – especially from prednisone. here in my city/towns most dr’s are very “anti-prednisone”. I have SEVERE symptoms without prednisone. I was taking it for my asthma at first, but then stayed on about 20 mg for 2 years! Went for about a week here and there without it but the joint pain and fatigue sent me right back to it – now I’ve been off it for about 3 weeks for the first time in 2 years, and I am having massive amounts of joint pain, muscle pain – especially from the waist down.

        NONE of the doctors will give me ANY prednisone, and they’ve all been super reluctant to give it to me period but its better to breathe most of the time. The doctor I see at work now won’t give it to me at all. I’m taking Meloxicam for pain (NSAID), and alternating Aleve, and Tylenol – and I’m STILL in massive amounts of pain – gets better when I am able to move around for a while, but then I get swelling in my legs and feet. My abdomen has increased x 10 since I’ve been on it – I look like “Winnie the pooh” but it has not started to subside at all yet – which is very depressing.

        My appetite has decreased, and I’m working long hours, and moving around and still not losing any of the weight I gained. The constant pain keeps me from doing a lot of stuff I used to do, along with the fatigue – I’d say I’ve aged 30+ years on the prednisone. I was active, and a respectable size 10 before just a few short years ago, and now I’m a size 20, and can barely move. Doctor STILL won’t give me anymore prednisone, and every doctor has been extremely against it.

        Doctors are not as worried about giving it to someone for short term 1week to a month, because usually you really need to be taking it for a WHILE before you have severe symptoms, or withdrawal. The main side effect MOST people get taking it EVEN short term is bloating – you get MOON face, and your appetite increases so you gain weight and that causes a lot of the other symptoms. Your body isn’t used to you eating all that.

        But most doctors won’t worry about short term – it’s long term you will start to hear them tell you horror stories about the prednisone to get you to stop taking it. Then they eventually put their foot down. The pain kept making me want to stay on it though. AND right NOW – I feel like an 80 year old woman – can’t move – I can’t lift my leg up high enough to climb into my damn car! lol I’m 50.

  • Beverly Galante August 30, 2014, 9:26 pm

    I came of 1 year of high doses, finally quit cold turkey and almost died with pain. Went back to Rheumatologist and she put me on low doses for several months. I quit again recently but was back down to about 3mg. I have sore muscles, loose skin, my hands (of all things) are always in pain. I find it difficult to get in and out of cars, etc. I just wonder how long this will take to go away. And will it go away? I hate my loose skin also. Wondr how to deal with that. And everyone is right…..it is poison and I can’t wait for it to leave my body.

    • Sheila February 14, 2015, 11:53 pm

      To Beverly Galante, I am tapering after 2 years on prednisone. I have PMR. I had what I thought was severe sciatica but now realize that it was prednisone withdrawal. I have been on 5 mg for a long time. My neck hurts, it feels like someone is stabbing me in the hip, my shoulder, fingertips, lower legs and toes have pins and needles. I can barely take it anymore. I have to talk to my Dr. to help me get off of this poison. I hope I can make it through the pain.

      • Ltnash April 13, 2015, 12:15 pm

        Thanks to everyone who has commented. I have been on Prednisone since 2002, currently 2mgs a day. I have been trying to get off the drug for almost a year. (I had temporal arthritis and polymyalgia rheumatica). But my SED rates go to 30 or 40 and I experience many of the symptoms mentioned in the article and comments. I am really grateful because I will now power through them knowing I am not alone and what the symptoms of withdrawal can be!

        • Joyce October 10, 2015, 1:42 pm

          Hi Ltnash, I, too, have PMR (self-diagnosed). I took Prednisone for 3 months and it was a huge help in combating the pain and inflammation. I weaned myself off from it as quickly as I could. I found that 4 foods trigger my inflammation; sugar, gluten, caffeine and alcohol. If I stay away from these offenders, I feel better. I wonder if any one else has experienced this.

          • Dottie October 30, 2015, 1:19 am

            Hi! I took prednisone for 10 mths. because of PMR. I did make a connection between flares and gluten. Of course, my rheumatologist looked at me like I was crazy when I tried to explain this to her.

        • Sue November 15, 2015, 2:25 am

          Golly, you are talking about my four major food groups! But seriously, I also have PMR and others I’ve talked to who also have it have said the same…gluten, alcohol, caffeine & sugar have caused flareups for them, either one alone or in combination. I have only been on prednisone for 2 weeks. Only 6 hours after my first dose of 40mgs, ALL my pain was gone and total functionality returned.

          (I had been bedridden the previous 8 weeks before finally being diagnosed.) My doctor is now reducing dosage to 15mg per day, so am very anxious to see how I’m going to handle the “weaning” process. My worse side effect since starting the prednisone is balance issues and my brain is foggy. Can’t stop darting from one project to the next; so wired all the time. These blogs have been very helpful!

          • Joyce November 20, 2015, 1:12 pm

            Hi Sue. So glad to have confirmation of what I have experienced. I went to numerous doctors and even though I wasn’t diagnosed with PMR by any of them, the rheumatologist prescribed Prednisone and it was a life saver. Once I had the pain better under control, I started making headway healing. It’s been a year and I’m 85% better. I’m exercising to get stronger and trying to eat healthy, which is very hard. But if I don’t, I feel inflamed and achy. My prayer is for complete healing. When I weaned myself off of Prednisone, it was a slow and careful process. Don’t hurry it but keep moving forward.

        • Ruth April 12, 2016, 5:24 am

          I was diagnosed with Still’s disease 2 years ago and have been on prednisone for that time. I am currently taking 2mg and just about to come off completely. Reading all these comments has made me feel less anxious about the symptoms I have been experiencing since tapering down. I am constantly tired, experience lack of appetite and muscle soreness. I know the prednisone saved my life but am longing for the time when I can feel like my old self again. Hang in there everyone and continue to share experiences because it definitely helps others.

          • Jennifer Youngblood May 4, 2016, 4:36 am

            I wonder why there aren’t more therapists or doctors who specialize in prednisone / corticosteroid counseling and withdrawals. I think there should be a special type of clinic or even rehab type institution for people on and coming off corticosteroids, because it’s inevitably physiologically very confusing for our bodies which confuses our minds too, and we feel alone in it because most of our local friends and immediate family members have not had to be put on it much or ever…

          • Cheryl July 9, 2016, 6:52 am

            Hello Ruth I’m also a rare bird diagnosed with Still’s in 2014 I’ve been on and off prednisone since July 2014 I’m going to share what has worked for me in the hopes it helps someone else get through their “treatment.” At first I had a lot of really bad side effects then we found some vitamins that I am not allergic to (Youngevity – Tangy Tangerine and Ultimate daily). I now take a LOT of supplements and I no longer get the pounding headaches and feeling like a caged animal.

            I am currently tapering off from several months of 50 mg/day which saved my thumb and whatever was going on with my eyes, probably also a few things going on inside too that needed it. I have gone paleo hard core no gluten no starch still working on giving up tea gave up honey no sugar. Extreme diet it does make a difference even more than the prednisone.

            I suspect a lot of the side effects are due to us being in a depleted state from poor nutrition and then the fevers make it even worse when we lose even more through the heavy sweats. I have been pounding on the vitamins and it really has helped still have side effects but they are not so intense. For the stomach cramps and pain I have been on Apo-Omeprazole 20mg each night works wonders I can’t tolerate the prednisone at all without it.

            For sleep I have been using 10mg Melatonin 45 minutes before bed helps a bit, I can sleep for about 4 hours at a time and I need to have a nap in the afternoon. When I taper off I get a few days of you have been seriously poisoned a couple of days after my last dose where my body purges itself, I have to drink lots of fluids and again liquid vitamins to get through it.

            Hoping I will not have to go back on it again ever. I am focusing on getting stronger and healthier and each day a little better and better. I use hot magnesium baths for the muscle ache stiff sore I can’t move times helps a lot. I only take the prednisone because the other drugs they want me on are even worse.

            I was told outright by the rheumatologist that those drugs wouldn’t even work but I have to fail on them first before they can put me on the experimental not covered by any insurance $30,000/month “your now a guinea pig drug,” that might work. No Thanks. I am now looking for a new doctor. Hope this info helps someone God Bless.

          • Cheryl July 10, 2016, 10:17 pm

            I found a youtube video on lowering coritsol that others may also find helpful. https://youtu.be/L2fKo_dbXS0

      • Roy May 1, 2015, 4:55 am

        Sheila, hope your pain has lessened some by now. I too was on prednisone for almost 3 years for a chronic kidney disease. After adjusting to all the many side effects, I did obtain relief of my kidney problems. I then went on a scaled reduction from 80 mg down to 5 mg then stopping all together. I am now experiencing all the painful symptoms your described. The sharp pain in my hips is like being stabbed by a knife. I wake with stiff shoulders, knees, and hands. When I mentioned my hip pain to my MD, she only offered to order an x-ray. So glad to learn that my joint & muscle pain is due to prednisone “withdrawal”. Hope it goes away soon – it’s been rough for the last 3 months!

        • marsha March 9, 2016, 10:48 pm

          Roy, Thank you for your post. I had a kidney transplant 2012 and part of the medications regimen is Predinsone. I detest this medication. I developed Cushing Syndrome (hump in upper back) Gout in both legs (my feet and legs was looking like pizza), gained over 75lbs, loss of vision on the sides and a laundry list of aliments. I made the decision to taper down until I am completely off.

          • Jennifer Youngblood May 4, 2016, 4:47 am

            Marsha – my question is, since you had a kidney transplant, don’t you think the prednisone helped your body KEEP THE NEW KIDNEY? If you had not taken the steroid for an organ transplant, you might not even be here today.

          • Julia May 7, 2016, 11:45 am

            Marsha, I have been on 10 mg, alternate day since my kidney transplant in 1968. I may have had some side effects, but none of them life threatening as rejection would be.

      • Sandy September 21, 2015, 1:53 pm

        Hi Sheila – I got PMR 3 years ago and went on 60 mg. All the sed rate tests made me stay on them but gradually after 3 years, I’m down to 4 mg for another 2 weeks. She said to decrease 1 mg every 4 weeks as long as my sed rate is in the 40’s. Can’t go off them too fast or you will be in trouble. I think the PMR has finally run its course after 3 years. It was a horrible time on those poison pills. Hope it doesn’t come back but she said it might. UGH!

      • Diane November 2, 2015, 3:00 pm

        I just came off prednisone after a year on a tapered dose, I was being treated for PMR but also have Hashimoto’s thyroiditis. Since I stopped it I have a discomfort in the pit of my stomach, burping a lot and a burning sensation in my chest. I’m wondering if the burning in my chest is more of an anxiety? After reading all these posts? Not usually an anxious person but recently moved and that was stressful and I discontinued it a week after moving, I had tapered down to 2.5mg 2xs a week. Thanks for any feedback!

      • Joan February 19, 2016, 11:52 pm

        I have PMR also, 68 and on prednisone since 2011. Have been reducing for some time now went to 2 mg last fall and feel like I have been hit by a truck most of the time, stomach issues, cold sweats, etc. After reading these I am wondering about going back up to 3 mg where I kinda felt really good. Thoughts or suggestions?

      • Beverly March 13, 2016, 5:34 pm

        Sheila, I was on such high doses at first for Giant Cell Arteritis. Then after 2 years I got so many symptoms, my rheumi put me back on low doses. Today, I am on 2 mg a day and the pain in my muscles is driving me crazy. I am determined to taper in the next month to 1 mg and then off.

        I hope you have gotten relief since the last time I wrote back a year ago. But it’s called PMR (Polymyalgia rheumatic) and it is devastating as well. No more poison after I’m all done with this. I would rather die too. Honest.

      • Bettie April 10, 2016, 8:54 am

        Omg! While I was reading your comment I thought it was me writting this, we are going through the exact same situation. I also was taking 5mg for 2 yrs. My last dose was the 2nd week of November 2015, here it’s April 2016 and I am still in excruciating pain, stabbing in arms, etc.

    • Donna May 1, 2015, 11:07 pm

      Beverly, I turn 35 this Aug and I have been on prednisone since diagnosed with Lupus and Reynaud’s. I couldn’t use my hands due to digital ulcers. As much as it has helped me when I was literally dying in pain, is as bad as it has destroyed my body. Got AVN and just had a hip replacement. I am now losing teeth partly from Lupus but the prednisone didn’t help.

      I have tried many times to get off with epic failures. After this past hip replacement I decided that’s enough. I am tapering very slow, currently on 2.5 now and man oh man I can barely get out of bed. All that keeps me going on with this taper is hope it will soon end. If I knew then… but I’m sure we all have said that. Also as a side note, I am a court reporter and also get major hand pain. I find what helps with the inflammation stiffness and pain is one of those foam stress balls.

      Not a hard one that you need to really struggle but just something that uses that movement. I actually use my soba Kawa pillow (not sure of the spelling). I do it every night and it helps so much. Even a regular pillow just something you can hold onto and squeeze. Weird but I find relief. -Donna

    • Lisa October 16, 2015, 4:52 am

      I have been on prednisone for over 9 years. My doses have varied anywhere from 5mg all the way up to 80mg a day sometimes twice a day. They had me on a taper for a month, well I thought I was do e with my taper and wow have I been very wrong. I would not wish this pain on anyone ever. My entire body hurts so bad I want to throw up from this excruciating pain all over. I sure hope it all ends soon and that doctors can find another medicine that they can give to us “in need” other than this demon drug.

      • me November 24, 2015, 10:17 pm

        Wow. I was wondering if anyone else has been on prednisone for a really extended amount of time. I have been on it for 7 years, even during two pregnancies. Even with tapering, the withdrawal symptoms are hell.

        • Melody January 8, 2016, 2:16 am

          Help! I tapered off prednisone after 7 years of 5 mg daily. It has been two months since my last pill and I have the worst aching and pain in my legs I have ever had! How long do these symptoms last?

          • Gill p January 31, 2016, 12:30 pm

            I have just got off Prednisone after 2 & 1/2 years tapering very slowly. For 2 weeks I felt great then I got awful pain in my leg, which was unbearable, the doctor gave me painkillers which didn’t even touch the pain, but upset my stomach. After no sleep for 3 weeks the pain started to subside to being sore rather than painful.

            After reading some of the posts it seems this is par for the course and is to be expected. So why don’t the doctors just explain this so we can accept it and deal with it best we can? Just hoping this adjustment to normal body functions doesn’t take too long.

          • Beverly March 13, 2016, 5:38 pm

            It’s probably muscle pain and weakness from the poison. Take an over the counter pain med. Wait for another several months and I think you might see improvement. Take vitamins and I find that turmeric power (1/2 tsp) in milk with honey is very helpful for inflammation. Good luck.

  • Jodi August 31, 2014, 2:31 pm

    My daughter, 13, was put on 50mgs of prednisone for just 5 days for a rash on her face…day 3 she started having anxiety attacks that would last for hours. We are now day 4 off the medicine and there is no end in sight. She is coming out of her skin with anxiety, racing thoughts, hysteria – crying, not feeling like herself and unable to cope. I asked her doctor about it and he said he’s never heard of anxiety with this med but ive found countless stories online of people feeling like they are losing their mind on less than 50mgs!! This cant last for months…she cant go to school, can barely make it through the day without me talking her down every second. I dont know what to do other than try to get her some xanax!

    • veronica October 18, 2014, 2:11 am

      Jodi, How long did this last? My daughter is 13 and on day 3 of panic attacks after taking the medicine for only 2 days. I feel horrible for her.

    • kaycee November 20, 2014, 4:40 am

      Hi Jodi – I recently was prescribed prednisone for inflammation and ringing in my ear. 50 mg for 5 days. By the third day I was ok the following morning I woke up with my heart rate increased walked my dog and nearly passed out. Went to the hospital was told to stop taking it. I went again to the ER 2 days later for palpitations. I remember taking 20 mg pred for 10 days and when I got off also had palpitations. I did not think anything of it at that time after many Dr visits even a heart monitor on me for 1 month! And to top it off, on the recent 3 days of 50 mg per day did not help with my ears.

      • Gail November 17, 2015, 8:53 pm

        Kaycee, Oh I have been on prednisone for sinus infection and swollen sinuses. I have tinnitus-ringing in the ears- and been able successfully to keep at bay…since being on prednisone my ears feel like an electric current between my ears through my head…NEVER had it this badly. And you were ‘given’ prednisone to help the tinnitus? Goodness…I’m praying when I’m off this stuff my head will feel like my own again and my ear ringing will tamp down. Hope I’ve not kicked the buzzing off permanently loud!!

    • Debi June 3, 2015, 9:05 am

      I was given prednisone for a 5 day round, 2 a day no taper. I will never take this again. It was given to me for an emphysema flair up. Didn’t really work and the anxiety and sweats and body pain is horrible. Xanax won’t touch it. Be aware everyone!

      • Agnes November 21, 2015, 7:31 pm

        Debi, I have learned so much after reading all the many blogs. Most of them are exactly what I have been experiencing and it’s horrible. I intend to have prednisone permanently put on my medical chart as a drug I am totally unable to tolerate. I was on a ten day “pack” for a pinched sciatica nerve due to surgery. I began having withdrawal symptoms before I had even finished the “pack”.

        I am so grateful as well as thankful that someone suggested reading these blogs and thank God I took the advice. At least I know I am not losing my mind or something else is about to happen. These blogs, thank all of you, have helped me get through the past 2 days and I believe that with the help of my praying friends I will be able to completely be prednisone free soon even if it takes reading more of these blogs for my sanity. Prednisone is of the devil’s work and NOT for me.

    • A 55 Yr Old Grandma November 26, 2015, 9:31 pm

      Jodi, Yes, show your doctor these stories. I have been on prednisone for many years, up and down in dosages and these side effects are real and happen to everyone. As do the withdrawals. We place blame on our children for being ADHD or bad etc. and we do not often think of some of the medications they are on. Like prednisone and any asthma medications it puts kids out of their minds and we as parents are not even warned about these effects other then on the paperwork from the pharmacist which NOW I read all of the time.

      My daughter has been prescribed steroids several times for asthma issues when she was younger, pills, inhaler, and she went through hell for weeks on it and then coming off it. With kids they do not seem to taper the liquid form as much. It’s a killing drug, but its also a life saving drug as I can attest. I hate to take it for rheumatoid arthritis and especially the quantities I have had to, but it has been so many times that or shooting my limbs off from the pain.

      Even pain pills, IVs do not help the pain of RA. Children, teens also do not understand WHY they are feeling this way so its even more confusing and also double the hormones because of the adrenal playing such a huge part when we take prednisone/steroids. I pray she is doing much much better and she does not have to take it again.

    • Fern January 4, 2016, 5:40 am

      SHORT TERM USE CAN CAUSE WITHDRAWAL. AI have been searching and searching for someone ELSE that has had withdrawal from short term use. I was prescribed this freaking drug for a sinus infection, took he med for 3 days, missed day 4 and by the following day I thought I was going crazy. I was emotional, tearful, anxious, nauseous, dizzy, fatigued, insomnia, etc. The worst I had ever felt in my life! I will ever again take this drug.

      • linda January 21, 2016, 2:40 pm

        OMG Thanks to everyone on this site. I know that it’s not me but this awful drug. I had a terrible asthma flare up and was give a 7 day 30mg prednisolone course. Took the whole course and now, two days later have dreadful stomach cramps, dizziness, headache and pins and needles in my hands and feet. Rang the GP who dismissed my concerns as nonsense. Hope I feel better soon but at least, as I said, it is comforting to know others have had similar problems.

      • Angela March 2, 2016, 3:28 pm

        Oh man I’m glad I found this! I don’t know how old these posts are but I was given 80mg for a week for asthmatic bronchitis. I’ve been off several days but it seems my fatigue is so much worse. My doctor was kind of nonchalant about the taper, because I’d taken prednisone in the past, and said I should take the high dose longer and do a shorter taper if I was still having chest congestion after a few days on.

        So I kept the dose high! My partner had pneumonia at the same time and got 60 mg for 5 days, no taper, so I assumed it would be okay. So thankful that I’m not having anxiety or depression because I am a very treatment resistant depressive, but being exhausted all the time is making me sick to my stomach when I try to accomplish anything.

        Sorry I’m rambling. Wishing you all a quickened recovery! At least now I can tell myself I’m not just being lazy and can try to be gentle with myself (very difficult to do). Hugs!

      • Molly June 14, 2016, 11:53 pm

        My daughter was given a 6-day medrol taper 2 weeks ago by an oral surgeon who took her wisdom teeth out. By day 3 on the drug she was calling me from her college town hysterical, raging and talking suicide. She does not normally have mental health issues. I didn’t know anyone to help her who was local, or what was going on, so I had the police pick her up and take her to the ER.

        The doc there told her that psychosis was a not-uncommon side effect of prednisone and she should stop taking it. She was put into a 72-hour psych hold at a mental health facility. It has been 10 days since she took the last one, and she is depressed and having crazy mood swings still. I can’t find on this board how long this lasts. Your use of the drug seems to mirror my daughters, please tell me how long it took for you to feel OK again. Thanks.

    • Bobbi February 3, 2016, 12:54 pm

      I started a 5 day 50 mg dose of pred. I haven’t slept all night. I’ve read all these people talk about mental-anxiety. My heart has been pounding since I took it 19 hrs ago. Should I just not take anymore? I can’t go 4 days without sleep. Especially since I have severe depression to start.

      • Marion T February 4, 2016, 12:20 am

        Oh dear, after reading all these comments I feel I got off quite lightly! I was taking prednisolone 80mg a day for 2 weeks for a severe chest infection. When I stopped it I felt awful, drained of energy, tired, weak and depressed. However, that has now cleared and I’m nearly ‘normal’ again but for now having very blurred vision?

        I wear glasses all the time but am finding it very difficult to focus, driving is becoming a problem, even watching TV. It’s about 3-4 weeks since I stopped the prednisolone but after reading some stuff on here I’m wondering if my vision disturbances are a side effect of these drugs? Anyone else had this problem?? Thanks for taking the time to read my comments.

        • Beverly March 13, 2016, 5:44 pm

          Yes. Vision can be impaired. This terrible drug causes cataracts for 1 thing and sometimes glaucoma. I’m getting off 4 years of this darn poison. I’m done. I’d rather just die and get it over with. P.S.: I just had cataract surgery and I can see again! I have other side effects too numerous to mention. (I did that a couple years ago in this trail of comments).

        • Ming April 6, 2016, 6:47 pm

          Yes I currently have hazy vision after being off of methylprednisone for 5 weeks today. I’ve never worn or needed glasses before.

        • Q June 1, 2016, 4:02 am

          I was on prednisone for a little over two years. I started to notice that my vision would suddenly crisscross, the things I was looking at would suddenly be seen as if looking through Kaleidoscope. I mentioned it to my eye doctor and he ended up putting prisms in my lenses to correct the problem. I also have moments with hazy, and blurry vision.

          None of which I had prior to using the prednisone. I developed a condition called Steven-Johnson’s Syndrome from a reaction to a sulfa drug. That is when the prednisone came into play for me. While it did cure certain things, I have often wondered if time would have afforded me the same relief without all of the side effects I have faced over the past few years. Good luck to you.

        • Mary September 2, 2016, 9:17 pm

          I read that prednisone can increase incidence of cataracts & glaucoma. If you have cataracts, it can speed their progression. You should see an opthamologist if you’re on steroids and having focus issues.

      • Charlisa February 12, 2016, 7:09 pm

        Bobbi, I was on a 5 DAY 60 MG. dose with no taper for TMJ and sinus infection from January 25th-29th this year (2016). Today is two weeks since my last dose and my body is not happy! Two days after my last dose I was so tired and it has gotten worse from there. I have had every withdrawal symptom except vomiting and rash.

        I thought it was the Bactrim DS I was also on for 14 days, so doctor told me to stop the Bactrim DS after only ten days (that was February 3rd), thankfully! Doctor told me it could not possibly be the Prednisone. Ha! Well, this last Monday, February 8th, found me in the EL with racing heartbeat, high blood pressure, anxiety, fear, panic, thinking I was feeling I was going to die, internal shaking from naval to sternum, weakness, fatigue, body shaking, hands, too, muscle and joint pain, horrible neck, shoulder and mid-back pain, especially on left side and anorexia.

        I told the doctor I thought it was from the Bactrim DS (oddly enough the side effects of Prednisone withdrawal and Bactrim mirror each other a lot), and gave him a list of my symptoms, which he ignored, but my nurse looked at it and he seemed to think I was on to something. The doctor gave me a bag of saline and Benadryl along with a 40 mg dose of potassium, plus a prescription for 5 days of potassium and discharged me.

        He told me to stay on the Benadryl as long as my symptoms lasted, but only ever 8 hours instead of 6 since I seem to be very, very sensitive to medications. At the ER, I also discovered I had lost 5 pounds in 5 days. On this Wednesday, February 10th, I went to the appointment I had scheduled the day of my ER trip. I took the typewritten list of my symptoms to my Family Nurse Practitioner and she actually looked at it!

        As I was telling her my whole saga, she heard me tell her I was spotting or my menstrual was early and her demeanor completely changed . She looked me in the eye and told me it was not the Bactrim DS, but the Prednisone! Eureka!! She said it is very rare, but she has seen this happens to other patients and she told me she tries to never prescribe corticosteroids, especially Prednisone/Medrol to women because it can really mess up our systems.

        She told me to finish my potassium prescribed by DR doctor and put me on the smallest dose of Clonidine possible, half of a .01 mg. tablet before bed. I have taken it the last two nights and have had insomnia and anxiety on it. I cannot win! Cox told me I could try Benadryl at night again and see if it helps. I hate the Benadryl, as it can wire me and make me woozy and foggy headed.

        I am a self-employed massage therapist with a thriving practice and no insurance and I have not been able to work this entire week! My family depends on my income, so that makes my racing heart and anxiety worse at moments. I know this was really long, but people looking for help need solutions. One of my friends has been going through a similar thing since a cortisone shot in his wrist on January 7th, 2016 and he told me the racing heart and anxiety subside with time.

        He has had symptoms for over a month. He recommended Calm Plus, which is magnesium, calcium, vitamins C, K and D3, which he said seems to help. He also suggested Hawthorn Berry for blood pressure but I am holding off on that. A client of mine has also recently gone through this. She said it took he three weeks to get through, but she got a cortisol manager made by Integrative Therapeutics, from our local Naturopath, that she said really helped.

        I called the Naturopath, but he is out until Monday, so that is where I am at the moment. As I sit with my sweet therapy/nurse dog, typing and drinking tons of water I am feeling better than last night, despite little sleep. My case is rare, but I will do my best to repost updates of possible helpful treatments and my healing time frame.

        Good luck to all and God bless us all! May we all recover quickly and fully! Feel free to reply and I will do my best to answer you!

        • Tommy May 15, 2016, 8:24 pm

          Hi everyone! I was diagnosed with HSP in January of this year! A very rare kidney disease for a man my age 55! I started taking prednisone on January 18th. I was at one point taking 80mg’s of the prednisone! Yes lots of crazy side effects! I have a wonderful Internal med Doctor and an amazing dermatologist and kidney specialist!

          I was warned by all 3 of my Dr.s about the side effects of the dreaded prednisone! I did my own research on the medication as my Dr.’s recommend. I have feeling of depression but I take medication for that which helps. Plus I see a Psychiatrist to help with the anxiety! And yes less energy!!!! I am just happy that my kidneys and liver are operating beautifully. Good luck to all of us! We can get through it! Tommy

          • Tommy May 15, 2016, 8:28 pm

            I have been weaning off the prednisone for almost 2 months! Down to 20mg until May 27th! That’s after more blood and urine tests! And a final diagnoses of the rare kidney disease called HSP! Good luck to everyone on this blog! Tommy

    • Vinne August 23, 2016, 2:03 pm

      Hi. I have been on prednisone for asthma. I’ve been hospitalized 57 days total of 3 times being admitted in last 20 months. In hospital IV steroids 240 mgs a day. Tapering to 80 then home and months of tapering down. I’ve lost 50% of my hair, my skin is peeling, ANXIETY bad enough they put me on Xanax and told me it was a side effect from prednisone, no sleep, blood pressure went high and I normally have low.

      Just to name a few of this horrible drugs side effects. I hate it, but it’s either this or not being able to breathe. Now I’m off for 4 days and have terrible headaches with decrease in appetite… not complaining there as I gained weight taking drug.. And nausea. I’m glad after reading all comments on this site to see its all unfortunately pretty normal. Wishing you all better health and prednisone free days ahead.

      • Lpete September 4, 2016, 5:37 pm

        I thought I was the only person on the planet that had this asthma problem that doesn’t want to go away! After almost 3 years pretty much constantly on prednisone, I hope I can get off of it someday, not yet tho! :(

    • Beth September 29, 2016, 3:09 pm

      I was prescribed a ten day dose of prednisone which was supposed to help inflammation for my pinched nerve. The first day I felt sleepy. The second and third day my pain was dulled, but I could still feel the inflammation radiating off my shoulder. Halfway through the week I started having MAJOR anxiety. I thought I was losing my mind, and had thoughts of suicide.

      Decided to quit cold turkey. Muscle pain came the very next day, and my mind… I think I’m losing it. The only thing my doc said was prednisone might make me “edgy”. BULL! I don’t know if I’ll ever feel myself again, and still don’t know what to do about the pain! Don’t take this drug!!!

  • H. L. King September 12, 2014, 3:22 pm

    I have had extreme headaches for nearly 10 years–called tension headaches and/or migraine. Every test and every med have been tried. the one thing that gave me any relief was a 6 day pack of Methylprednisolone or a cortisone shot in my aching neck. The pack did not last long but the shot gave relief when I was at the end of my rope. My doctor does not do the shots and does not px prednisone—he will allow the MP, but relief is short.

    One night I was next to insane with the head, and I had some 5mg left over from a previous Dr. who px prednisone freely. In desperation I took 5=25mg. at about 3a.m–by 4a.m I had the most restful night I have had in 10 years followed by several days where I felt like living again, as I tapered down to 5 mg. daily. I believe I need a maintenance dose like this and since I am 85 would be willing to take it for life for the relief. It returned some quality, appetite, zest for life, — I will ask the dr. to reconsider and give me a px for 5mg/daily.

    • sarah February 3, 2016, 12:31 am

      See a neurologist for your headaches. When my migraines go on and on, he gives me 3 days of IV prednisone (outpatient). This gets rid of the headaches and breaks the cycle. He will also prescibe medication not prednisone) for you to take when you start to get a headache and, if needed, prescribe medication to prevent the headaches. Please trust me, this is the best advice that you will ever get. YOU NEED A NEUROLOGIST SPECIALIZING IN HEADACHES. Please post back and let me know how you are doing.

    • Jerome November 28, 2016, 12:58 am

      A maintenance dose of 5mg a day is very common. There are very few side effects, and if at age 85 it gives you a life back, go for it.

  • Karen September 15, 2014, 11:55 pm

    My Dr. put me on 10mg of Prednisone for 7 days to help get rid of water and puffiness. Well, I have been off it for about 3 weeks and immediately following ending of the medication, I now have severe abdominal distention. I look like I’m about 6 months pregnant and none of my clothes fit. Wondering if anyone else had this reaction. I was diagnosed with Microscopic Colitis, but this doesn’t seem to go along with that. The Dr.’s don’t seem to know what’s going on, that’s why I thought it may be a reaction to the Prednisone.

    • Mike October 1, 2014, 6:06 pm

      Karen, how are you feeling now. I am experiencing your same symptoms

      • Colleen February 5, 2015, 3:02 pm

        I too have abdominal cramping! My life is on hold… I’m off it now and on Carafate for one month. Taken before meals and at bedtime. Does not work and I’m afraid to eat. The cramping is worse than Labor. Any suggestions that might help would be greatly appreciated.

        • Agnes November 21, 2015, 7:53 pm

          Drink as much water as you can hold to flush your system out. I’m drinking one glass of milk after another to rid me of one of the hazards of prednisone. Some people can’t tolerate milk though. I pray this helps.

    • Vicki Richardson March 1, 2015, 10:20 pm

      I’ve been of of this med for about 2 months and am laying on the couch typing this with an extended stomach. All I had to eat today were several pieces of toast this morning and my stomach gets huge. I’m going for a walk in awhile and am trying to take as many as I can. I’m hoping this helps flush it out and also give me my muscle tone back. Tired of this mess, and the doctors tell us NOTHING. Good and bad days with stomach, sometimes the less I eat the better.

      • Cynthia February 15, 2016, 4:46 am

        Stop the bread! I found gluten was the main cause of most of my joint issues. I have RA and was on 20+MG prednisone for over 20 years, (40mg for over a year, prescribed by a nurse practioner that obviously was not educated about the dangers of Prednisone). I have stopped all prednisone about 6 months ago and have gone through all of the withdrawals mentioned on this site.

        It took years trying to reduce the dose down to 5mgs because of the side effects, extreme joint pain & depression. My main issue now is a cute urgent diarrhea (no control, BM’s are all water and lots of gas with a lot of abdominal pain). The doctors are telling me it is because of being on prednisone for so many years (one of the withdrawals from long term prednisone).

        They can’t say the diarrhea will ever stop, if it does it might take months or even years. I now stay on Immodium so I can at least go out of the house. I had to wear adult diapers for several months because I didn’t have ANY bowel control. I have totally removed gluten, GMO’s and sugar out of my diet, I am now drug free except for Imodium until, hopefully, the diarrhea stops.

        I don’t have any joint pain but I sleep about 10 hours a day, I think my body is trying to recover from the withdrawals of the poisons of prednisone, sugar, GMO’s and gluten. Two weeks ago I broke out in hives, I am hoping it is just the poisons from the prednisone leaving my body. Glutens, GMO’s & sugars are just more poisons approved by our government. Get them out of your diet!

        • Iris March 5, 2016, 6:26 am

          Wow. I experienced a sudden onset of arthritis after a major stomach infection (or salmonella) along with uveitis in both eyes. The diarrhea lasted 4 weeks. Have been on prednisone for seven weeks, but feel no relief from the arthritis. My chiropractor recommended a naturopath and suggested that perhaps I may have also suddenly developed food allergies. I’ve gone from 60 mg and am now down to 10 mg.

          I’m wondering if I can taper off at 10 mg or if I should do another week of 5mg. So glad to hear your joint pain is gone. What a miracle! I will finally meet with a rheumatologist next week. Hope to find out what’s going on with my body. So frustrating to go from healthy to horrible joint pain and an inability to function.

          • steph May 21, 2016, 10:12 am

            Uveitis is one of the symptoms of the disease that I have. It is called Behcet’s disease and is basically an inflammatory disease of blood vessels. Since blood vessels occur everywhere it affects every part of my body. It is a rare disease in the US and it took 10 years of escalating symptoms, with the finale being aseptic meningitis, for me to figure out what I had and get on biologics to control the symptoms.

            In those years before I was diagnosed the only thing that kept me alive were periodic stays in the hospital on high doses of prednisone. Even after diagnosis I required 40 mg of prednisone per day in addition to my other treatment. Every time I attempted a taper my Behcets would come raging back. A few months ago my Behctes has been stable with 30 mg for 9 months.

            I saw my endocrinologist who recommended 20 mg with the option to go to 40 if I was ill. I have done well with that. I had to switch to a new endo who is telling me that I should only be taking 5mg. When I asked about a taper he told me it was perfectly safe for me to drop from 20 to 5. I was worried about it and did not follow his advice.

            After doing some reading, including this site, I have decided to: 1) Get a second opinion 2) Taper very slowly 3) Remember that these symptoms are temporary 4) Take lots of hot baths for their ability to aid in detox and pain.

    • Mary Carol July 10, 2015, 6:12 pm

      I have had abdominal distention–I have been on and off of prednisone for (3) years–it has been a nightmare and ruined my life–I will do a longer post.

      • WM July 13, 2015, 4:07 am

        I went to the Dr. for chest rash, anxiety, headache, muscle ache, joint pain, stomach distension, neck pain, can’t sleep, always tired, intestinal cramps, diarrhea, and abdominal pain. He didn’t seem to know what was going on… did some blood and urine tests that I haven’t heard results from yet. After doing research on my own, I found all of you. I quit taking prednisone for sinus inflammation about 3 weeks ago.

        I was on it for 4 weeks tapering for one of them. Since the last dose, I feel like crap and until now I didn’t know what was going on. Reading these posts makes me feel like I have an answer but am not looking forward to how long it looks like it takes to get this crap out of my system. Good luck everyone!

    • Gene July 18, 2015, 4:55 pm

      I just completed taking a 6 day blister pack of methylprednisolone with 21 tablets 4mg each, starting with 5/day tapering off to 1/day. It’s been 4 days since taking the last dose and I look like I have a beer belly. I feel full even when I eat very little or nothing. I’ve been reading that stomach distention can be a side effect so I’m hoping that’s what’s causing it and wondering how long it will last. The prednisone was prescribed for minor sinus infection!! Doc told me it was no big deal, that it’s what he’d prescribe if someone had poison ivy. A physician assistant friend couldn’t believe a doctor would prescribe it for a sinus condition! What’s the deal with these docs?

      • anne September 25, 2015, 1:54 am

        I too was given prednisone for a sinus infection and fluid in my ear. I was on the taper for 9 days. Since the last dose, I’ve had blurred vision, sleeplessness, not having an appetite now (while on it, I was eating like someone smoking pot), the skin on my feet feels like its burnt, my muscles and joints hurt like I’m being stabbed, oh yeah I broke out in hives! WHEN does it get better? NEVER will I take this again.

      • Mary September 2, 2016, 9:37 pm

        Hi Gene. I, too, took the same pack. 6 days, tapering to one pill on final day. I was diagnosed with lymphocytic colitis and was also taking Lialda. I felt GREAT fit the first week! Energy like crazy, although I didn’t sleep a lot. Then, I was prescribed 10mg for the next 2/3 weeks, tapering to 5 the following week. Now I’m on 5mg every other day, then every 2 days, etc.

        I’m dreading ending it completely and pay I don’t have all the withdrawals talked about here. Oddly enough, I did start running a fever last night, with lots of aches and headache, like the flu. But this could actually be withdrawal, from what I’m reading. Some stomach bloat, but it’s not the major complaint.

  • MK September 19, 2014, 4:10 am

    My husband was on prednizone on and off for 2 months due to severe Asthma. He suffered many side effects including erectile dysfunction . Been off of it now 3 weeks, how long before he is feeling back to normal ?

  • JA September 20, 2014, 7:40 pm

    I was prescribed 10mg of Prednisone for 4 days with no taper. On day 5 I experienced a pretty significant panic attack which brought me back to the ER. They couldnt understand why the previous dr. did not taper my dosage so they prescribed a short tapered dose ranging from 3mg to 1mg over 6 days. It’s now day 3 after and I have still experienced withdrawal symptoms such as anxiety, clammy hands and feet, nervousness, and some low fever.

    I will recommend to everyone from my experience that you not have caffeine or stimulants while you are taking Prednisone, and that you should monitor your blood sugar after the prescription ends as your blood sugar will most likely drop. I found this out the hard way, and supplemented gatorade to increase my sugar and sodium levels and it has helped alot today. Doctors should give more verbal warnings and aftercare advice about this medication as it can be dangerous and take a while to get over.

    • cathy October 16, 2014, 1:01 pm

      My daughter just experienced the same thing. At college she got a severe ear infection. The dr. put her on a low dose for 5 days and then cold turkey. Three days later – she is a mess. She was never given any information and as she is 18, I was not included in the treatment plan.

    • Juana January 4, 2016, 12:49 am

      How long does it take for blood sugar drops to stop? Does anyone know?

  • SA September 21, 2014, 9:36 pm

    I was prescribed 50 mg of prednisone daily for 5 days followed by a 4 day taper (40, 30, 20, 10). By the day I tapered to 20, I woke up at 4 in the morning with one of the worst headaches of my life. It has been more than a week since the final dose. I have crying spells every day. I am so fatigued I can hardly function. I have taken naps which I never take. Yesterday, I slept for 11 hours and still could hardly drag myself out of bed. I have weird muscle cramps in my legs and abdomen that leave my muscles sore like I have bruises. All this and I only had five days of relief from the pain of cervical radiculopathy. How can I feel so terrible after only 10 days of this medication? And when will my body start making its own hormones again? I am so very exhausted and in more pain than when I started.

  • sandra September 27, 2014, 2:52 am

    (Finishing my comment)

    I feel that the doctor should express to their patient just how important it is to taper down. Like everyone here i am experiencing symptoms. One i havent read mentioned is the in ability to watch tv without becoming dizzy from the movements. Not as bad as some of you but im still hoping for no surprises. After dealing with this for about 3-4 months now, i feel im starting to settle down to normal. Pray for me.

    I pray all of you hang in there until your relief comes and that it comes real soon! The comforting part to me is that our bodies *can* recover. I was wondering about diet and vitamins and anything we can do to help our adreanal glands along.

    Take care and God speed for a quick recovery for everyone here.

    Sandra

    • Amber February 22, 2015, 2:28 am

      My doctors idea of tapering down has left me unable to function without taking pain medication. I was on 60mg of predisone for the past 6 weeks. I have Steven Johnson’s Syndrome, which is an allergic reaction to antibiotics, and prednisone does help with that, as far as I know it is what saved my life this time. My doctor prescribed 60mg of prednisone and also some Hydrocodone pain pills, I still had a few of the pain pills left and hope he will give me a refill on them.

      He cut me from the 60mg of predisone to 10mg of prednisone, just like that. I have such severe pain that I can’t even walk. I asked him if he thought it was the lack of prednisone and he told me no, but I know different. So here I am in so much pain that all I can do is cry and scream and can’t even get out of bed without a pain pill anymore. I only have 2 pain pills left. I tried OTC but they don’t even touch the pain.

      I don’t know what to do, but I am at least glad to know that there are others like me and that what I am experiencing is real. Everything hurts and it feels like I have waves of pain wash over my body. I hope that no one has to go through the pain I am in, or that they have a doctor who cuts them 50mg all at once. I don’t hate prednisone, as it is what I truly believe saved my life, but I do hate the fact that I am now in so much pain because of it. Hope you all feel better quickly. -Amber

      • terri hale March 26, 2015, 10:10 am

        I have polymyalgia. I become ill with it at the end of 2013 after the shock of finding my partners mum had died before we managed to get to her. Couldn’t get over the Dartford Bridge so much traffic. The pain was so severe in my muscles that over that Christmas it was a nightmare. When I was able to see my doctor he put me on 20mg prednisolone for 4 weeks to try and taper down. I am now down to 5mg tried 4mg but pain came back so up 1mg again. To be honest I’m not me anymore. I have days when my head is so far in the clouds that I can’t drive or do anything sensible. I have prior to this never been ill, odd flu and sore throats but never anything serious.

        I can’t take medication of any kind normally it has a very bad effect on my body making me more ill. So at 77 years old what do I do. I have always been small and full of energy so to have gained 2 1/2 stone in this past year is unbelievable. My stomach is huge, I now have a hiatus hernia which the steroids are making far worse. I hope to be off them come this summer but I know what the pain will be like and am very worried that I won’t be able to cope. I hope all of you out there manage to get your dosage down and feel better.

    • Rose April 10, 2015, 6:35 pm

      Hi Sandra. It has been 7 months since your comments and I hope by now you are back to your normal self. I have been on high doses of prednisone for PMR and GCA for 4 months. When I saw what this drug was doing to my health I immediately began the tapering process. I have now reduced my dosage from 50 mg daily to 17mg. I am experiencing some side effects and withdrawal symptoms, which mimic the illness I was being treated for. I have found that mega doses of vitamins have helped to minimize those symptoms.

      I am taking evening primrose oil, zinc, and lecithin to help the hormone levels reach normal production as well as Vitamin C, Vit. A&D., Calcium, magnesium, Vit. E, and all the B vitamins. I am taking so many vitamins as well as still being on prednisone, I actually have made up a daily chart to help me track my vitamin and drug plan. I have found the vitamins very beneficial (especially the hormonal ones) and am hoping my symptoms do not worsen. I hope this is helpful to every one else trying to quit this “evil drug.”

      • Bob October 21, 2015, 4:04 pm

        I have been on prednisone as well since 2009 originally to treat a chest cold with fever, no antibiotics would work. I was put on 60 mg and made a recovery back to where I could function at work and live normally. During this first episode my blood and lung function were tested, my blood count was abnormal and lung function 50%. I was diagnosed as possibly having Churg Strauss Syndrome.

        My eosinophyl count remained out of balance for most of 6 months then came back to normal ranges, blood and lung function tested normal. I tapered off 60 to 10 then was hit with other symptoms mostly related to sinus and allergies but some unusual ones as well. This was in Beijing China. Over the next 5 years I cycled from 60, 80, 100 then tapered, each taper ended badly.

        One bout of hemolytic anemia, one bout of double vision for months, another bout of hemolytic anemia, one bout of sepsis. Prednisone seemed to pull me out of all of these episodes (each sending me to the ER). While going up on the drug life is wonderful to 30mg from there to 60 I would get a bit dizzy, at 60 my limbs would randomly shake and most everything was a mental fuzz, at 100 I needed to be close to someone while walking due to imbalance.

        I never had anxiety, I was grouchy at times when over 30mg, developed chimumk face which disappears back at 10mg. I managed to maintain somewhat of a weight balance, cycled about 15 lbs around the 200 mark. I left Beijing in 2015, now in Cairo. I have tapered again, once I hit 5 mg I tapered at 1mg per 4 weeks. I had some uncontrollable shakes 2x along the way.

        Now 2 days a 0 but with some aches and sinus problems, stomach is cramping and extended and I am slightly low on RBC. I can live with this at the moment. For me this is not a terrible drug but certainly has issues and do not want to be on it. If it will save my life I will gladly take it again.

        • Beth January 30, 2016, 4:33 am

          Hi Bob, I have an official diagnosis of Churg-Strauss Syndrome that was confirmed by skin lesion biopsy in March 2014. I have been on Prednisone daily since then. Currently tapering down and am at 9mg, and came to this site after experiencing a very itchy rash on my inner forearms as a withdrawal symptom. I also have mood swings, disrupted hormones/menstrual cycles, joint aches, blurred vision, and fatigue with my taper.

          I stubbornly remain active and utilize running trails and the gym as much as my body allows. I am determined to do my best to get off this stuff with God’s help! I hate Prednisone, but without it, I would have died in my hospital bed. Some of us do not have a choice but to take this. Praying that researchers can figure out some alternatives for those of us with severe/deadly autoimmune diseases.

    • Dennis August 2, 2016, 3:46 pm

      Sandra, I too became even more sick from watching TV. I went in for slight dizziness and my (ex) doctor prescribed Prednisone. He told me 40 mg was the lowest dose available. But I see two mg is the lowest.

      After the third dose I woke up at 4:AM sick to my stomach, intensely dizzy, sweating, and my blood pressure was very high. It took eight hours for my blood pressure to start to come down but it took two more weeks for it to get close to normal. This was six weeks ago and I have not been able to work or drive. I am mostly bed bound.

      My new doctor suggest Ginger Root supplement to ease the symptoms and it does help sometimes.

  • Mara September 30, 2014, 10:24 pm

    I was on Prednisone for about 3 months starting at 60mg and tapering off in the last 4 weeks that I was on the medication. I almost immediately was hit by joint pain and increased diabetic neuropathy in my feet. I am not about 3 months off the steroids and it has been a definite battle. I am feeling a little better. Joint pain is still there but getting better.

    I had hives for a short while, but that seems to have cleared up. I am also having trouble with blurry vision, although I just had an eye exam and there are no problems. While this is a tough road to hoe, I think keeping as positive and attitude as you can is essential. It’s difficult when you are in serious pain and can’t sleep, but it does get better. I think the hardest part is that doctors don’t really talk about the side effects or listen to you when you are complaining about issues from withdrawal. In fact, I think that they may not even be aware half the time.

    My endocrinologist looked at me like elephants were coming out of my mouth when I told him I thought I was having issues with my feet because of this. Bottom line – go to a doctor who will listen. I finally got a doctor who knew something about it, and it turned out to be my podiatrist. He prescribed Lyrica for my feet and it has taken my pain from a 10 to a 4 or 5. Hang in there. I am and I’m confident that I’ll feel better within the year.

    • Beck December 19, 2014, 10:38 pm

      I was on pred for 2.5 years. From 5mg to 60mg for lupus face rash. No Dr ever told me about the side effects of being on it (heart palpitations, anxiety, short term memory problems, eyesight issues, sleep deprivation, depression a terribly boated face and more). No Dr again (!), and I have several Dr’s, told me about the impacts of withdrawal! I tapered over MONTHS by 10mg then by 5 mg, 2.5 mg and by 1mg. So careful! But still, as soon as I hit 3mg, the withdrawal side effects started. Now it is 5 months on and I’m still having them!

      It’s doing my head in! The anxiety and head mess up has finally dissipated but I am still plagued with fatigue, aches, bloated joints, particularly in the mornings, itchy skin (no rash though) (particularly after showering). The brochure talked about 5% experiencing depression on the drug, well I know others who’ve taken it and read a lot of online comments. It seems almost all people feel emotional impacts when on it from garden variety anxiety to depression and suicidal thoughts.

      But there was nothing in the brochure about side effects coming off it other than be careful to taper so your body can learn to self produce the stuff again. OMG, 5 months of hell coming off the drug (still ongoing) and that’s after 2 years of hell, all for a subacute curtaneous lupus rash. I tried to come off several times during the 2.5 years but each time got lupus skin flairs. In the end, I was paranoid of lupus flairs and tapered over 5 months.

      Suffice to say, tapering more carefully than I have read anyone else has did not, is not, has not helped to save me from the hellish joint pain, fatigue, depression, inflammation and itches that are ongoing now as I head towards month 6. If you’re not on pred, don’t take it unless it’s saving your life. Hives, rashes etc, not worth it! If you are on it, give your Dr a serve if they didn’t go through all the symptoms and withdrawal risks before prescribing it. Give them another serve if they didn’t explore all alternatives before prescribing pred. It’s a terrible medication. Terrible.

      • Lisa Sellers January 10, 2015, 1:44 am

        I finished very slow taper (stepping down 2.5 MG every two weeks starting at 20 mg) after 4 years of the stuff. It has been roughly two weeks. I continue to feel weaker and more horrific each day. How are you doing, Beck?

    • Sandy January 24, 2016, 5:52 pm

      Thanks for making me feel better about the vision difficulties. I had double pneumonia with plural effusion. I did two rounds of prednisone, then was hospitalized ten days with IV steroids. Tapered down to 10mg. I thought I blew out my knee, but now know that, along with extreme fatigue, anxiety, is going to take awhile.

      After being almost done with my menopausal hot flashes, they are back with a vengeance. I sleep horrible, my family wants the active me back, as I feel like an 80 year old lady, instead of a very active 55 year old granny. I worry about getting back to running my two businesses, and being able to get back to my gym to work out. Thanks everyone for helping me know I’m not alone.

  • Darlene October 1, 2014, 3:34 pm

    Here is another follow up from my previous posts. It is now week 5 1/2 and I am still running a low grade fever. Had so many blood tests ran. I even went to another doctor who was great but thinks that because the Prednisone was within a 2 week time frame that all should be gone. I am STILL not right. No one can find the cause of the low grade fever. Still losing weight. Before I had a hard time losing weight. I developed some weird white stuff(not candida) in my mouth and went to the doctor and dentist. The dentist said it was due to the Prednisone.

    It has been 5 weeks! Why is this crap still going on??? My stomach did calm down from the beginning but just had an abdominal ultrasound done to check things in there. I still really have no appetite and as I mentioned before I way less now than when I did this crap. When it began I had an 80Mg shot of Depo Medrol for the poison ivy/Oak then a 5 day taper that I stopped after 7 pills. Then went back to my primary since the first stuff was from Urgent Care and they put me on the 12 day that I stopped at 8 days due to problems.

    They say it should be out of my system but I don’t believe it. I really feel that I am messed up from this garbage . No one can provide any definitive answers. I keep hearing if it was two weeks you should be fine. Even the Urgent Care doc doesn’t believe Pred does this. Really??? Because i have a mountain of doctor bills to prove otherwise and this crap should not be administered for something like poison ivy.I had never taken this garbage before . I feel hopeless.

    Yes I have asked about Adrenal Insufficiency asking if this is my problem and they are like ,no we don’t think so. I just want to be normal again is all.I am scared it isn’t going to happen. My immune system is jacked up now. Can anyone out there that has went through this provide some positive feedback? Please don’t say I will have to go back on the devil pills in hopes of correcting my body. This should not be happening still.

    • carrie January 14, 2015, 2:49 am

      Darlene, how are you feeling lately? I’m now at 6 weeks and am still having major issues! Anxiety, insomnia, and just feeling overall terrible! Hope you’re doing better!

    • Roxanne June 1, 2015, 6:35 am

      Darlene & all you ex-preds with issues…I took prednisone at high doses (60-20 mgs) for 2.5 years (to save my kidneys), but wound up on Cellcept when prednisone didn’t work. But getting off was a nightmare, partly because I have Hashimoto’s thyroiditis & my GP was overmedicating my low thyroid so that my HPA axis was suppressed, TSH suppressed. When I asked for his advice in tapering off prednisone after a long term, he would never leave me on a dose longer than two weeks.

      Even after bronchitis/pneumonia, he said to start tapering again after one week! Anyway, he nearly killed me, so I went back up to 5 mg (your body’s basic daily need) until I could get to a five-star rated (by patients) endocrinologist. She is the best dr I have (I know there are lots of bad endos out there–that’s why I resisted going to one for so long, heard horror stories.) But she tested my adrenals & thyroid (not just TSH), set my thyroid meds at a sane level without making me hypo, then said we would drop the prednisone by one mg PER MONTH!

      She continued testing the adrenals at intervals to make sure tapering was still safe. I had a few foot problems that required temporary increases along the way, but kept going with the taper. Fortunately, my adrenals have woken up fully & my thyroid labs are spot-on where they need to be. Unfortunately, I wound up with prednisone-induced glaucoma which I’m still hoping will resolve. My last prednisone was March 7, 2015. I’m 3 months out now & labs say I’m fine. And in many ways I’m feeling much better now.

      BUT just let me say that my skeletal muscles are wasted, my tendons are so fragile normal movement injures them & my joints (fingers, wrists, elbows, knees, feet) all hurt. I am still waiting for a morning when I can wake without pain, stiffness & infirmity. I don’t know if or when I will fully recover from these symptoms. But I am patiently waiting for a positive outcome. I was in almost constant pain during the 6 month taper, and have continued in pain the three months off.

      But if I’m honest, the pain now is probably less than one or two months ago. I tell you all this to encourage you. Yes, it’s frustrating, but your body needs a patient ally – that has to be you. Find a really good doctor who will do the right labs and approach the taper off carefully. Then let your body have a year or two to heal if necessary. You may never be the same as before, but at least you can get better than you have been. Hope this helps some of you!

      • Jane November 1, 2015, 10:55 pm

        Roxanne, I, too, am experiencing mirror images of you. I was diagnosed with Addison’s Disease 5 years ago. I should say, misdiagnosed. Apparently, I now have adrenal insufficiency instead. No one can tell me what happened 5 years ago to start all this, but I am in the tapering stage now. After being on hydrocortisone for 4 1/2 years, now prednisone for 6 months and tapering off that, back to hydrocortisone and then a final taper from that is the plan.

        I have a great endocrinologist at Mayo Clinic and she is tapering slowly and is very informative with information about everything. She has even given me her direct phone number for any issues that I want to talk to her about. I say this because yes I feel the drug itself is evil, but there are some very caring doctors out there willing to help even if it was another doctor’s mess they are cleaning up.

        I am so happy to have found this site because even after research I have symptoms that I didn’t realize were related to the prednisone tapering. I’m sure, unfortunately, that this is only the beginning of my awful journey. I’m sure I will be doing this for at least the next year or so. I don’t know how I will make it through, but I guess the best advice is to listen to all of you and try to be strong and get through every day one at a time.

        By the way, my worst symptoms right now are severe nausea, headaches, body aches and pain, numbness and tingling in my hands, arms and legs. They are going to do some tests to rule out other AI diseases, but the neurologist even said it all could be caused from the prednisone. Thanks to everyone and someone else said it best, God Speed to everyone and their recovery.

    • peggy January 17, 2016, 12:36 am

      Your story sound just like mine. I was given 80 mg prednisone in the ER twice for hives I developed when I quit smoking. My joints hurt every day. I know if I go to my family doctor, he will prescribe something else… no more drugs. Going to try yoga and go the holistic route. I hate the pain. Only heat makes it better.

  • Craig October 8, 2014, 5:38 am

    Came off a 3 months 5mg dose no taper and I was prescribed for carpel tunnel then gout. I have the worst anxiety of my life racing thoughts think the worst of everyone shaky hands I will never take prednisone again its been two week still no improvement. I hope to see a end to this soon. No one believes me when I tell them it was from the predisone.

    • ceal shannon August 8, 2015, 8:25 pm

      it’s been a while since you wrote this Craig, but I want to validate you and all the others on this sight. I haven’t taken it but my sister is trying valiantly to detox from it and I am her fulltime caregiver. Your symptoms are as real as the idiots who prescribe it without understanding what it does or else not caring what it does. I am sorry for all of you and your pain and frustration.

      I pray for you all and so far my research points to your body being able to heal although the process is lengthy. May God Bless you all with strength and hope and peace that is past our understanding. You all are strong to make it through this process. Hang in there and keep your eyes on the great physician who know what we need in spite of the messes mankind causes.

      • Agnes November 21, 2015, 8:42 pm

        Thank you Ceal Shannon for your comforting words. “Ask and we shall receive” that is what the Great Physician tells us. My prayer is that some intelligent person somewhere will realize what a “killer” drug the prednisone is! God Bless you and thanks for sharing.

  • V. Thompson October 9, 2014, 3:53 am

    I have been taking prednisone for nearly 22yrs, ppl say they never heard of such a thing.. Yes I was.. Went to new endocrinologist and he took me off.. I was taking 5mg daily.. For adrenal insufficiency or addisons.. Guess what? He said I did’nt have either one. So yes, I was taking this stuff all these years for nothing.. Now I feel like a tin man.. I hurt like hell all over.. From head to feet.. and now it maybe years b4 I can get some relief. If anyone has any suggestions please let me know..

    • Anita October 14, 2014, 12:19 am

      I can’t believe that a doctor would keep you on prednisone for so many years, that’s outrageous!! I know exactly how you feel when you mentioned “tin man.”
      I was on prednisone for 1 year as a result from a severe allergic reaction to an antibiotic which gave me PMR. I am going through the process now of eliminating this drug from my body. I can relate to what everyone is going through.

      I decided to visit a Chinese herbalist, who put me on a course of ginseng tablets and herbs which I have to boil and drink twice a day for 2 weeks. I have also been having acupuncture, I don’t like needles so I have the machine, they put pebbles on a strap then put the strap around your sore points, which in my case are my knees. Then they have wires that connect to a machine which feels like little pin pricks, doesn’t hurt.

      I have had 5 treatments so far and I definitely feel improvement. I also bought some ointment that they use called Wong To Yick which I usually use on my joints 3-5 times a day depending on my stiffness. The hardest thing for me is getting in and out of the car and bending to pick something off the floor.
      I try and do a little exercise every day like walking stretching nothing too strenuous and nap when I feel tired.

      The most important advice I can offer is listen to your body for only you know what your body is capable of. I hope this gives you some hope that their are other options out there that can help. Good luck and I will keep you informed about my journey to recovery. Keep positive.

    • connie December 19, 2014, 9:31 pm

      I have been on Prednisone for years also. Past 2 years been on 5mg daily. I have lung issues… Anyways, I have recently stopped my prednisone and feel like I have been hit with a mac truck. I bent down to pick something off the floor and soreness in my muscles had me in tears. My stomach is swollen and hurting. This is all scaring me. I have read all of these comments and it’s making me wish I had not stopped them!

      • terri December 30, 2014, 1:04 am

        OK now I am scared I have been on Medrol (Predisone) for oh my god! Since I was 28! I am now 51! I have severe asthma and this is the only thing that works 8mg a day… my skin is thin, I bruise all the time, I look like a walking pin cushion :( from my doggie. Just saying hello I don’t think I will ever be able to get off this stuff. If I miss a dose my nose clogs up and wheezing and coughing starts right away as a reminder to take it. I screwed up taking it for so long :( I Pray you all get off this before it is too late to even try :(

    • Cathie October 26, 2015, 10:08 pm

      I too have been on daily long term Prednisone, now 22 years this month. I have tried repeatedly to get off of it since about 9 months after starting it. I have Mixed Connective Tissue disease, Lupus symptoms and Chronic Inflammatory Peripheral Neuropathy.

      After reaching a low dose, the pain from attempts to cut was intolerable. At one point, I was finally able to get to 1.5 mg daily, but the implantation of a cardiac pacemaker caused such a terrible flareup, I had to go back up on my dose. A replacement pacemaker also triggered the same reaction.

      Prednisone has caused osteoporosis of the neck of my femur and I am constantly afraid I am going to fall and end up bedfast. The drugs prescribed for this are also frightening and I don’t know what to do. I am to the point where I do not trust any prescription drugs any longer and I also lack trust in many doctors.

      I would not recommend Prednisone, unless there was just no other choice; in my own case, nothing else worked.

    • L.Hansen March 10, 2016, 5:43 pm

      I have been on Prednisone for 15 years for Lupus and Rheumatoid Arthritis and Lupus Nephritis. I have finally made it down to 7.5 mg for about 2 weeks now from 100mg being my highest dose in the early days of illness. I expected only joint pain as I taper but reading all of these responses has really opened my eyes.

      I did not attribute the anxiety, heart palpitations, sleeplessness and weight loss to the taper. I drop .5mg about every 4-6 weeks, I can’t imagine how I would feel if I dropped by even a full mg. Thank you all for sharing your stories.

      • Faye July 1, 2016, 2:06 am

        This is hell for me. I have been on prednisone for 15 years, have tapered off very slow and everything is going wrong. Shortness of breath, fatigue, dizziness, tired all the time, low blood pressure, heart palpitations, liver and kidney functions is not right. I have been off 1 month and no better. They say I have to tough it out.

  • Lyn October 14, 2014, 11:09 pm

    Hi. I just finished reading all the comments on this page… some have been helpful… others, outright scary. My mother (50 years) has been on prednisone for 3 years taking 80mg. This year, she started weaning the meds until last month when she decided she was tired and stopped taking the then 30mg entirely.
    For about a week now, she started facing serious joint pains and has been bedridden the whole day today. My mom is a very strong woman, and it breaks my heart to see her like this.

    Can anyone tell me how she can help ease the symptoms and how soon the pain will go away for good? And also if the pain can get worse or life threatening. My mother is all I have and she means the entire universe to me. Kindly give any helpful advice you have no matter how little it is. We live in Ghana, west africa and most pharmacists and doctors we have been to know nothing about what she is going through. Some say it’s just menopause or old age. The internet is my last resort, and it has been the most helpful so far. Advice, support and feedback are more than welcomed. God bless.

    • Anita October 16, 2014, 1:50 pm

      Lyn I was just reading your comment and had to respond. Your mum really needs to go back to her doctor and go on a plan of weaning off prednisone the right way. This drug should not be stopped cold turkey as it could do more harm. I used to have a blood test every 6 weeks to check my inflammation level, ask her doctor to do a blood test to check this. There is so much information on the Internet which explains the working of this drug on the body, it helped me to understand what was happening.

      I have never experienced so much pain in my life and just to make life more interesting I tripped over and broke my rib. My reason for wanting to get off this drug was the horrific side effects and it took me 6 months of nagging my doctor before he started to wean me off. From my experience to make your mum more comfortable, there are many arthritic linoments out there that would help to ease the pain of her joints, drink plenty of water which lubricates the joints, I also used to have a glass of warm water with lemon in the mornings to try and make my body more alkaline.

      Pillows under legs when sleeping, hot water bottle also helps. Whole foods, fruits and veggies are good. When I was in severe pain and couldn’t get comfortable to sleep but felt exhausted from the pain I would listen to meditation tapes on Youtube by Louise Hay, this also helped. Because your mum has been on a high dosage she has to be weaned off slowly so her body can adjust, other wise your body can go into shock. It’s been 6 weeks now since I have been off prednisone, the first 3 weeks were the worse but I have been having acupuncture and I am starting to feel human again. I hope this helps you. Take care.

      • Lyn December 4, 2014, 2:27 pm

        Thank you for your help Anita. My mum is getting better and she is following your advice. I appreciate that you responded, you have been so helpful. I wish you a full recovery in the shortest possible time. Thank you very much. Take care… ^_^

  • Ken October 15, 2014, 1:08 pm

    I’ve recently experienced a series of adverse events while taking Prednisone for poison ivy and it’s very serious. I suddenly got very argumentative with my girlfriend on the day I completed the dose (I was tapering down but for whatever reason, I had 3 10mg pills left and took them remembering the doctor encouraged me to complete the dose.) That evening we went to the park for a jog, so I took two Aleve and some 5 hour energy.

    The short story is she hasn’t talked to me since and she has moved out of the house and says she’ll never talk to me again. She dismisses that my extreme argumentativeness was due to the Prednisone. I don’t blame her for being hurt by my words and feeling frightened by my aggressiveness. It took me a couple of days to recognize that it was the Prednisone that was driving me to try and win arguments over two subjects that have challenged us in the past.

    Uninhibited, I felt that I could convince her to see things my way. All I did was scare the hell out of her. Losing her has made the withdrawals even worse, I’m a basket case and went to see a psychologist for anger management. It can be extremely destructive to those who are sensitive to the side effects in this drug. Heads up, avoid potential heartbreak, ask someone to keep an eye on you when you’re medicating. Avoid interactions with naxporen and alcohol! Please be careful out there!

    • Richard March 26, 2015, 10:58 am

      Hi Ken, wow that story matches mine with the arguments. I wasn’t on a high dose 10mgs for about 8 months weening of now. My wife walked out on me at Christmas due to me wanting answers to our situation (like a dog with a bone). 2 weeks ago I had the biggest headache in the world I thought it was all over I was literally sick which I never am even when drunk or in a hangover and crashed out for 2 whole days and the rest of the next week felt like crap. I have the shakes like mad too. I’m now down to 1.5mgs and don’t feel well but if it stays at this level I can cope. At the moment my message is do it slowly lets see what the next month brings when we come off completely. Good luck to you all stay strong and focused. -Richard

    • Collin August 24, 2015, 11:37 pm

      I’ve been in a very similar situation. My wife has almost left me several times due to my prednisone-crazies. All I can say is hang in there & get help from counselors when you need it.

      • C.P. October 6, 2015, 10:21 pm

        Sorry this happened. As someone who gets into arguments even without predinosone, I think your partners should be more supportive! If someone is going to leave you just because of one fight, were they really the right person for you anyway?

  • Sonia October 15, 2014, 6:43 pm

    I was given prednisone for a skin reaction to cosmetics that wouldn’t subside by an urgent care facility. It was supposed to be 40mg for 7 days–I started on a Sunday and by Tuesday I felt like my heart was going to pound out of my chest. I woke up to a pounding heart at night. So I was told to take 20 in the AM and 20 in the pm and if I still feel funny go down to 20 a day then 10. I did exactly that. Monday was my last dose of 10 – I threw the last few away.

    I have had the worst heartburn/pain ever. It goes away with antacids to return again. Then I had pretty severe muscle pain of my back which was gone in 24 hours. I have tried everything for the heartburn – today the it subsided for almost 3 hours and in that time my skin is hot and itchy. I am seeing my Dr. tomorrow. Feel dizzy, anxious, panicky, my sinuses are shifting so much I have a headache and I am hungry but afraid to mess up my stomach even more.

    Symptom after symptom and I stopped two days ago. I am so uncomfortable and the anxiety (another thing) keeps telling me I’m having a heart attack. I thought this was a good drug for the allergic reaction – that it would ‘kick’ it. But now I am riddled with a ton of new symptoms. Hope this all goes away. I’ll deal with the allergies with Benadryl or something!

  • Claire October 20, 2014, 4:52 am

    I am currently on 80mg a day for almost two months. I was diagnosed with IGA Nephropathy which is a Autoimmune Deficiency and they said this is the first choice of treatment and the less aggressive. The next step if this does not provide my body with remission is a chemotherapy regimen. I have to say I feel like my body is going through Hell daily. First six weeks or so I had awful mouth sores, constant metallic taste in my mouth, facial and neck swelling, no more than 2-3 hours of sleep per night, and my mind wandering constantly.

    The last two weeks we can add to the list so much facial swelling my head hurts, eyes swollen,distorted vision, abdominal bleeding ( doctors believe a ulcer) I am feeling fatigued, ringing in the ears and unbelievably thirsty all the time. The really frustrating part is that I sit here wondering if this is worth it. I have a appointment with my doctor in 3 days where I find out if this Hellish experience is worth it…if so I get to look forward to these awful withdrawal stories and if not…I get to look forward to the withdrawal symptoms while undergoing chemotherapy.

    I really wish there were other/better treatment options but it appears from my reading and speaking with people there really isn’t. Every time I feel like why am I doing this. I look at my three daughters: 22,18,16 and remember that I cannot give up. It’s a pretty awful existence right now, but I trust that my doctor is doing what’s best for me. He was honest about the side effects and has called me numerous times asking if the quality of life is compromised to a point where I want to try the next step. I figure give this a two month course as originally suggested.

    Plenty of time to explore the chemotherapy side effect boards if it comes to that. I feel for all of you who feel the treatment you were given hindered you more than it helped you. I certainly hope my experience is not the same, if this is the worst I will keep pushing on.

    • Roxanne June 1, 2015, 7:33 am

      Claire, just had to respond. I too have IgA Nephropathy (diagnosed in 2005) & was told in August of 2012 that my urinary protein levels had climbed so high that I had to be put on high dose prednisone – no choice. So I took it. After a year or so, it became clear that the prednisone wasn’t working, so my nephrologist said I could get off prednisone & that I should take Cellcept instead. I wasn’t able to successfully get off the prednisone until March 2015 under the guidance of a very competent endocrinologist.

      I wasn’t able to take the full dose of Cellcept, so I asked my nephrologist if a half a dose (sub-clinical) would be of any help. He agreed to that, I had been through many negative reactions to many other blood pressure meds, etc. I am doing great now, with normal clearance & good labs. But that is not owing to my meds. Right before I was put on prednisone, I had finally been put on a BP med (Tekturna) that actually made me feel great, with no side effects.

      Consequently, I had started to cook for myself again, and began to eat eggs almost daily. Then my urine protein labs started going through the roof (14-17 grams/day). I soon correlated my eating of eggs with severe renal cramping an hour or so later, followed by the passage of a toilet bowl of prolific foam. I surmised that I had an IgA allergy to eggs! I was excited to know what (in my case) was prompting my trouble because I could do something about it – even if getting eggs out of your life is a difficult task (don’t forget immunizations–they may be at fault too).

      Unfortunately, the immune damage had already created a runaway train which required heavy duty drugs. But as I worked to keep eggs in all forms – they’re everywhere – from my body, I felt that eventually, once the immune system was brought back into control, I could get better. (I had sought help from an allergist in 2010 to see if I was allergic to eggs or other things, but he branded me a hypochondriac & refused to even discuss testing). I suspect that several exposures to Zithromax may have been the original precursor to my IgA Nephropathy.

      Now, I know every case is different, and I don’t know where you are in your labs & CKD stage, but I am stage 3. After 3 years of ordeals, my urinary protein output is now well under 2 grams, sometimes under 1 gram. I believe people with IGAN need to keep logs of symptoms, labs & foods they eat and any other possibly significant exposures to see if they can find a pattern that might reveal clues to your illness progression. As for treatments, explore every possible option with your doctors and research everything!

      You can’t be your own doctor, but you have to educate yourself about your body, immune system, IGAN & about treatments. So little is known about IGAN that your observations, instincts and research are a vital part of your wellness picture. And God is much greater than any facts. Don’t give up & don’t give in. It’s so important to your family to see how you approach the trials & tests of life, including this illness. As a born-again Christian, I seek to God to help me with information & decisions, then I work with my doctors on a course that’s right for me.

      Doctors often are prejudiced about where your disease is headed and will walk you down a garden path if you don’t guide the treatment process with your input. It’s your life, not the doctors. It’s you who stays awake nights sick with side effects, not them. Just make sure you research reliable sources – boards, while helpful, are not enough by themselves. We only get one life down here – it’s so important how we live it. Best wishes to you in your health journey.

  • Kristi October 21, 2014, 12:24 am

    I started on 60 mgs of prednisone for a very rare auto immune disease that affected all of my connective tissues. I started tapering almost immediately but 6 mos after starting we discovered that my disease had also attacked my heart, causing scarring which attracted clots. My doctors believed the prednisone stopped the heart disease in its tracks … It probably would have killed me if I hadn’t started the prednisone when I did.

    So in an abundance of caution, I went on an extremely slow taper. At one point I experienced adrenal fatigue and had to go back up on my dose. It took 2 1/2 years but I finally got off in July. I experienced every bad side effect you can imagine… I gained 60 lbs, had the moon face and “buffalo hump,” acne, facial hair … It was a nightmare. By the time I got down to 5 mgs all the negative side effects went away and my weight started to come off in its own. I decided to put some effort I to it and really started focusing on diet and exercise and ended up losing almost all of my added weight.

    I was riding my bike up to 10 miles a day and going to the gym doing cardio and weights. By Sept my daily schedule made it difficult to exercise at the same level and frequency as I was before. I started to notice that when I did exercise I would get aches and pains that I wasn’t experiencing before. Biking caused severe pain in my ankle forcing me to give it a rest. Then I started experiencing horrible pain in my hips and I noticed I’m unusually tired all the time. I get depressed and anxious.

    I told my friends I thought it was a mid life crisis (tomorrow’s my 41st birthday), but when I mentioned it to my rheumatologist last week she said it could be lingering withdrawal from prednisone. I told her I just thought I needed to get back to the gym and maybe I’d feel better but it’s gotten so much worse just in the past week. I definitely feel like I did when I had adrenal fatigue before. I don’t understand it because it just hit me and I’ve been off prednisone for 3 months.

    I was completely fine for at least 2 months after I stopped it. I’m wondering if it has something to do with the fact that I was exercising so much when I went off and now that I’ve basically stopped I’m hit with adrenal fatigue. It’s a catch 22 though… I’m way to tired and achy to want to work out but I do wonder if it would help.

  • Susan October 22, 2014, 11:02 pm

    I was given a shot of steroid and then a 6 day dose that tapered down for sinusitis/ bronchitis and I was so dizzy as I started to taper down that I stopped a day early. Now I’m experiencing anxiety and shakes. I’m scared to leave the house because I’m afraid I’ll have an attack away from home. It’s been 5 days and thought I was doing better but ended up having another attack with terrible shaking. Am I ever going to get over this. I’m to the point I just want to cry when it starts happening.

    Hoping to see the doctor tomorrow but it sounds like it just has to run its course. Not sure how much more I can take. All I can say is never again anyone will get me to take prednisone. Xanax seem to help but really don’t like to take them. I’m going to try vit C and more sugar/ sodium that some in this blog suggested. I’ll keep you posted it it works. God bless all that are suffering through this. Hope relief is soon.

  • Dot October 23, 2014, 4:10 pm

    I was put on 60mg of prednisone for one week and then 50mg for one month, 40mg for one month, 30mg for one month, 20mg for one month, 10mg for one month, and then 9mg for one week, on down to one. I think my pulmonologist was right about the weaning process. I was on it for around 4 1/2 months. My Boop pneumonia has gone, but I’ve educated myself and found that the Macrolide antibiotics have anti-inflammatory properties, and have shown promise. Will take longer on antibiotics, but you don’t have all the hellish side effects.

    I was in pure misery. The doctor did not even know about this. I did my homework and found out about this great antibiotic!!! If I ever get this hellish disease again, I’m going with the Erythromycin and other Macrolide antibiotics. Might take longer than prednisone, but this prednisone is a killer. I am achy, can’t exercise, still tired, irritable, depressed and I’ve been off this crap for over 2 months. I will never take this drug again. It is hell!

    • Debra October 30, 2014, 1:02 am

      I have the same thing. But on the 3 months scan his wasn’t completely gone. It grew so rapidly the first 3 months that they thought it was cancer. Biopsy showed it was boop. Have five weeks left on steroids. Hope it’s gone on next scan. I feel terrible 6 months on prednisone

      • Joan December 8, 2014, 11:56 pm

        Hope things are getting better for you. I too had BOOP type pneumonia and have been on prednisone since last April. Had the pneumonia go from one lung to both on the second scan. 3rd scan showed almost clear and now am on taper off prednisone. Down to 30 mg currently. My back is very painful and I am thinking it is from the prednisone withdrawal. Can’t wait to get off of all these medications. Was your book a result of radiation?

        • Leslie February 6, 2015, 2:07 am

          I was diagnosed with BOOP last year after a lung biopsy. I was asked to take 60mg of predinsone but I took only 10mg. I didn’t get the weight gain but I didn’t get any better. Since then, I have listened to the Dr and have been on predinsone on and off (weened each time) and both of my lungs are still congested. I just want to get well. I am currently aching from withdrawals because I have been off for 4 months. Riding a stationary bike slowly makes my joints feel better and using light weights. I just want to breathe normal again….

          • Gary Watson September 8, 2016, 11:55 pm

            I too had BOOP and ARDS. Was on a ventilator and medically induced coma for 17 days in March. While under they did lung biopsies and discovered BOOP. Put me on 120 mg prednisone. I am now tapered to 9 mg. dropping 1 mg per week. Other than a low grade headache, almost like a weak sinus headache and some tolerable joint ache I seem to be doing fine.

            I will not trash prednisone as it saved my life. My question is, did they have discovered what caused your BOOP? Between my assigned pulmonary Doctor and a second opinion from Washington University Lung Specialist they still have no idea where it came from. It would be nice to know. I hope you recover fully. Looking forward to that day myself.

  • phil October 25, 2014, 2:14 pm

    Wow, I must be really lucky. I was on 10 mgs of prednisone 3 months then tapered down to 5 mg for 2 months due to rheumatoid arthritis and haven’t had a fraction of the negative effects people have listed here. This drug was a godsend for me and kept me from quitting my job due to constant joint pain. I did have trouble sleeping while I was on it but this was minimized when I started taking it first thing in the morning.

    To the people that say doctors are stupid for prescribing this, I doubt you’ve had an autoimmune disease. For myself and a lot of other people this drug kept me from being in a wheelchair at age 23. Yes the side effects can be life altering but for people who truly need it they are well worth it. At the same time, it does appear that some doctors give this stuff out at high doses for conditions that probably don’t call for it, such as poison ivy.

    • Lisa November 28, 2014, 11:06 am

      Thankyou for your post. I too have had great relief from prednisone for asthma (life saving), severe allergies to antibiotics, and more recently severe and debilitating onset of an auto-immune disease. I was gtting a bit annoyed by all the ‘poison drug’ posts. Most of the major issues seems to be from not tapering as per doctors instructions. Or not consulting their doctor for a longer/shorter taper period when it wasnt going well. I have had to up the dose during the taper period as my body wasnt adjusting quick enough or had a ‘flare up’ but ALWAYS with discussion with my doctor or rheumatologist first.

  • Darlene October 27, 2014, 7:36 pm

    Well it has been 26 days since my last post and here is where I am at. I stopped the pred pills on 8-23 as you can see in my above posts. I was given a Depo-Medrol 80Mg shot on 8-3-14 at the beginning of this mess. I am still trying to pull through this. My stomach has gotten better but I am going to see a gastro doc tomorrow. It takes forever to get into them. I am on a 2nd round of antibiotics for a cough and sore throat that started just a few eeks after stopping pred. My vitamin levels are normal and my last CBC was on 9-25-14.

    I gyno referred me to one of the top endocrinologist doctors in Cincinnati. I have headaches that come and go and baseline cortisol and ACTH taken early in the morning showed normal. This isn’t your ACTH stim test but some normalcy is better than none. I still DO NOT feel normal. I have learned so much from my experience. My family doctor seems to believe me now after blowing me off for weeks and several appointments after seeing that I haven’t been well. I was on prednisone and the shot for no more than two weeks adding it all up. I feel like it totally changed me.

    I still have anxiety and the shakes. If you are a long time user DO NOT just stop taking this. You must wean off. Talk to your doctor about weaning if you want off of it. I will never willingly take this stuff again. I feel sorry for people who have been on it for a long time. Anything over 2 weeks starts long term. The doctors do not tell you what this does to your body as they are unsure. I would also think twice about getting that allergy shot. I had no idea I was actually given a steroid shot for poison ivy. These can take months to leave the body contrary to what any doctor says.

    My doctor was honest ad said it can take months. Prednisone is evil but at least you can stop the pills and not have to worry about it lingering forever. Prednisone does stay in your tissues until it all comes out. I lost a lot of weight when I stopped and really gained only like 3 lbs. I still have a daily occurrence of the low grade fever that goes up and down and no explanation. I think my body may one day recover but it will be a while. I pray we all feel better soon. If you are given this medication please research before you take it.

    It also can cause psychosis. I will try and update as time goes on and let you know what happens. I hope it hasn’t damaged me too bad. I didn’t realize that you can also get cancer from it lowering your immune system and if you had any hidden infection you are screwed. Good Luck everyone.

  • ulcerative colitis girl October 28, 2014, 3:17 am

    This is the worst drug I’ve ever taken. This is the second course for me and I’ve experienced severe withdrawal symptoms this round. The first round was fine. But this taper is crippling to say the least. Can’t get out of bed. My husband has to carry me to bed at times. Can’t walk. Everything that I eat pains my stomach and makes the withdrawal symptoms 10x worse so you resort to not wanting to eat because food becomes your worse enemy. The worst symptom that I experienced is severe severe abdominal pain — as mentioned above — to the point where I couldn’t stand up.

    I would crawl to get my pills and food to eat in the morning just so I didn’t die from not taking them at all. Another severe symptom that I experienced was vomiting everyday. Nothing stayed down. My doctor finally prescribed a medication that would coat my stomach in the morning before taking it. I haven’t started it yet — tomorrow thankfully! But I am looking forward to continuing to heal and finally end this prednisone hell. My advice to anyone out there — if you don’t NEED to be on prednisone, and I mean need as in no not a flareup that you need to get under control but NEED as in if you don’t take it you’re going to die — then I would stay very very far away.

    I have only been on it for less than one month and started tapering after week 2.5. Also be very skeptical of doctors who “freely” prescribe prednisone like its a benign medication sort of like a tylenol. This is a very deadly drug. My doctor (former now BC I got a new one) prescribed 60mg, then increased the dose to 80mg and when I told him I started to feel sick on 80mg, he tapered me off too fast. That’s when my body almost crippled. I am 125 pounds and my new doctor advised there is no way someone my size should be on 80mg even at my worse flareup (ulcerative colitis). Good luck. Please stay away from this drug.

    • Darlene October 30, 2014, 3:04 pm

      @ UC girl: I am so sorry that you are also having so many problems. The prednisone actually has caused digestive distress fro me among all of the other problems. I had never used this drug before and I hope to never have to take it again. Doctors are uneducated about this medicine and even short term has caused me problems that I cannot overcome. I hope you feel better and you were put on a high dose. I started out at 40Mg a day for five days (only took 7 out of ten pills) and then on the 2nd round it was for 12 days (only took for 8 1/2 and took 24 out of 30 pills).

      I started getting mouth sores and white gums while on it and my bp and blood sugar went up. Three days after stopping all hell broke loose. I have never been the same and that was almost 9 weeks ago . My doctor thinks I am crazy a bit still and I am sick of going to them to get answers. My blood work was off the charts a week after stopping but has since returned to “normal”. I can’t seem to get back . Some people have no problems on this stuff while others do. How long have you had UC? What are your symptoms? I think it is funny that they are using this drug to help your UC and it caused me a possible ulcer and prednisone induced gastritis that has occurred. Hope you feel better soon.

    • Krystle charbonneau June 8, 2015, 7:11 pm

      Hello! I have ulcerative colitis as well. I’ve been battling it for 13 yrs. I’m 30 yrs old and 128lbs. My doctor put me on 60mg for 3 days then 40 for 3 days and now I’m on 20mg. I have the most intense dizzy spells. I can’t even drive. I want to get the hell off this drug asap! Have you ever had dizziness?

      • Fiona July 2, 2015, 3:58 pm

        Hi Krystle, Hope your dizziness has settled, I just started a dose of prednisone, stopped it after 2 days due to dizziness and nausea. Nearly passed out while driving and my heart was pounding. I can’t drive either at the moment, hoping it will pass sooner than later.

  • Kayla October 30, 2014, 9:32 pm

    I am 19 years old and have had Crohn’s disease for about 6 years. I have been on prednisone at least once a year every year since I was diagnosed and it is always hell. Recently, I had a pretty severe bout and the doctor started me at 40 mg a day tapering off at 10 a week. I immediately received the all too familiar symptoms including the anxiety attacks and severe hunger. I called my mom last week in tears, telling her I was too stupid for college because I had a C in a class.

    I have had the weight gain, the moon face, the insomnia, the acne, and many other symptoms from the prednisone. I wish I could say it gets better right away, but it’s definitely a patience thing. Sometimes when I’m on it, I will barely have any symptoms and will feel like myself again in a week. Other times, it can take up to 2 months to be back to myself. All I can say is hang in there, you will make it through this.

  • lori October 30, 2014, 10:48 pm

    I have been on 10 mil for 2 years. I had a dr apt which they asked me to bring all my medications to the apt with to go over everything and note what I’m taking I have memory problems but anyways I got home and forgot to put my medications back so I took them like I’m supposed to everyday and I when without prednisone for 5 days cold turkey I was shaking nauseous and dizzy and my stomach hurt I thought I had the flu until I realized wait I haven’t been taking my medication. I went and took my 10 mil prednisone and felt better with in 30 min. It took me probably 3 days before the withdrawals got bad but I thought I had the flu. Just thought I’d share of how bad it was in only 5 days for me cold turkey. I’m on prednisone until my dr says different he says because of my illness.

  • April October 31, 2014, 1:45 am

    Prednisone saved me! The side effects were not fun, but I developed shingles on my 7th and 8th nerve. This condition is called Ramsay’s Hunt syndrome. I had to do 2 rounds of depo medrol shots and 30 mg a day both times. Then tapered off. My paralysis is gone and the vertigo has pretty much cleared up. My condition lasted 3 months. The side effects were unpleasant.

    Bad headaches, insomnia, stomach cramps and weight gain. Both times I finished the 12 day tapering off I slept 12 hours at night and found myself nodding off during the day. For the last 3 months I have either not been sleeping or wanting to sleep constantly. Without the prednisone I may have experienced permanent damage to my facial and vestibular nerves. Despite the side effects I would take it again under these circumstances.

  • Jessica November 4, 2014, 8:27 am

    I was on a 5 day course of 20mg day, or short burst with no taper, for acute bronchitis. I was told by my doctor there should be minimal side effects since it was only a short course. After my last dose I immediately experienced extreme fatigue and nausea and had to eat every two hours to keep my energy levels up despite having a decrease in appetite. Now 3 weeks later I am still experiencing some muscle aches, increased anxiety, irregular menstruation, and insomnia. Hope these withdrawal symptoms go away soon!

    • Leigh November 4, 2015, 1:19 pm

      Did the symptoms ever go away? I was on a short dose as well and it has been 2 weeks since I finished it. Just hoping there is a light at the end of the tunnel.

  • Bette November 7, 2014, 3:37 pm

    In January this year I was diagnosed with Polymyalgia/Rheumatica and was put on 10mg of Prednisone and told to reduce it to 5mg in 2 weeks and see my GP after that. Nothing helped my excruciating pain, so I searched for another Rheumatologist and he said I should have been on 20mg and reduce over 6 months or more. I have been doing that and am now down to 4 1/2mg. I have been very depressed and extremely tired this last month or so.

    I can relate to the person who lost their girlfriend over an argument, my husband is one of the most patient people I know, bless him. He has put up with my horrible mood swings and nasty remarks, I am hoping this will subside soon and we can get back to normal. I have read that it takes a long time for the adrenal glands to start producing on their own again, so am hoping when I see the Dr. again he will tell me I can get off this steroid forever. Hope everyone gets better soon.

    I also wanted to know if anyone has experienced numb legs and feet from the knee down? I’ve never been told by any Dr. that this could be one of the side effects from withdrawal or they just don’t know!

    • Peter January 12, 2016, 6:00 am

      Numb legs and feet are certainly produced by tapering off and stopping prednisone, I have them after taking prednisone for 6 years for PMR. Plus a few other symptoms which I do not care for, but not as bad as some of the other sufferers. And I tapered off over a period of a year as well. Joint pain and perpetual weariness are my main bugbears.

  • jackke millman November 8, 2014, 4:18 pm

    Me too. My ENT consultant put me on an intensive medical management for Chronic sinusitis. 5 days of 40mg no taper, 100mg doxycycline, 10 mg montelukast, an antihistamine and steroid nose drops twice a day. I have never ever felt so ill. Coming off the steroid I went into severe anxiety with racing heart 155 beats per min, severe muscle pain and I couldn’t get out of bed for 5 days. Went to GP twice and he took me off everything. Feel a bit better a week later but now have cold sores and dry mouth. Never ever ever will I take prednisone again. With all that poly-pharmacy how on earth will the docs know which drug is causing what side effect.

  • Connie November 12, 2014, 1:49 am

    I was adamant about not taking Prednisone, but there I was, just diagnosed with Lupus @ 77, rash and itches over my entire body, but subsiding. Reluctantly filled script for Prednisone 5 mg 2x day,even though he said 1x a day. Took it for 2 weeks. Suffered severe abdominal pain. Just finished P.T. for a fractured sacrum and compressed lumbar vertebrae, leaking and encroaching my spine.

    I made amazing progress, then decided to quit the Prednisone (just 5 mg). Hypoglycemia returned, after absence of many years, severe lower back pain, thoracic and neck pain. Waking in the a.m. with severe L neck and head pain which left me 3 years ago after a cervical discectomy, replaced with titanium basket. My surgeon was my hero. But withdrawal from Prednisone changed all that. I pray this will not last long. Still walking Andy, our beautiful Greyhound. He just got certified as a Therapy Dog.

  • Craig November 13, 2014, 2:44 am

    Hi guys, when you wean down and get down to about 10mg it gets tough. Around this stage you might need to come down 2.5mg a week but I had bad problems and so my endocrinologist said try 1mg a week. I’ve been doing this but bought some 1mg tablets and cut in half. I do 3 days at say 9.5 then 3-4 days at 9mg etc and continually wean down. I also use lavender essential oils to help with sleep and chamomile tea to help with anxiety and occasionally 1/4 of a valium if it’s really bad. Currently on 6.5 mg and seeing Endocrinologist next week when I reach 5mg to have a blood test for ACTH to see if my body is producing cortisol on it’s own. It’s important to have this monitored if you have been on a high dose/been on for an extended period. Good luck everybody!

  • moiraann November 13, 2014, 5:41 am

    I was in prednisone for four years for Polymialgia Rheumatica. I have been off the drugs for eight weeks. I put on a huge amount of weight which I am finding impossible to shift. I am still experiencing a lot of pain but fatigue is getting less and I am finally able to do a little bit of walking again. I’m hoping my symptoms will go away soon. I’m determined not to go back on prednisone because it messes with your head and body.

  • Lynette November 13, 2014, 10:23 pm

    I was on 60mg tapering down to 20. Couldn’t stand it. Weight gain, puffiness in face, acne, unable to sleep, got everything you could think of. I became extremely argumentative. Anyway long story short my husband couldn’t stand being around me, he wasn’t supportive, caring, or compassionate. We are in the process of divorcing. I am off prednisone but still have the shakes. When will they end?

  • Amy November 19, 2014, 12:37 am

    My daughter was 14 months when she had her first asthma episode. Then for months, a year afterwards I had her on prednisone via nebulizer every winter season – until I figured out how to get her off the drugs (changed her diet a million times until I got it right, took me over a year). Now almost 10, she is the same height as her 7-year-old brother. My husband and I are over 5’8″ tall.

    Prednisone not only depresses the immune system, it stunts growth. My daughter caught every speck of a germ that anyone and everyone was carrying, which severely limited her play-dates and she had cavities galore from the nebulizer/inhaler use. I fear that the effects are permanent.

  • Dee November 19, 2014, 4:30 am

    I just read through all of these comments, searching for a little ray of hope for my Mom’s symptoms. She was put on 40mg/day (20 in the morning, 20 in the evening), for one month. 3 weeks into it, she went down to 20/day because it was making her feel like she was losing her mind. After a week of being on 20, get Dr told her drop to 10mg for 3 days, then 5mg for 3 days, and then she’d be off of them.

    This past Saturday (Nov 15th) was the last day she took it. Today is the 18th, only 3 days of being off of it, she was in bed almost all day. She’s been experiencing terrible nausea, upper & lower back pain, her ribs are hurting terribly, her one foot has some swelling, she went from eating everything to not wanting anything, she’s emotional, and completely miserable. Watching her go through this is scaring me a lot. I’ve never seen get like this before (she’s 66). I don’t know what to do to help her.

    Any suggestions would be appreciated. She does have a regular Dr appointment this coming Monday, but I don’t know if we should take her to the ER, or if this is just something that has to run it’s course… and how long will it last. My fear is months or more. She’s having a harder time dealing with not being able to do anything. She’s normally a busy body, not one to sit much at all, so that’s very frustrating for her, too.

  • dorothy November 19, 2014, 6:38 am

    My husband was put on prednisone for pneumonia. He was on a dose of 40 for awhile and then lowered to 30 for two years. Every time they would try to lower the dosage he could not function. At one point I could tell tell things were not right. Found out they were giving him 25 in am and 5 at night. Argued with doctor until he agreed to try it my way – 30 at one time. It worked. Have never found the root problem.

    Took him to John’s Hopkins. The discounted all the local diagnosis. After a year he is down To 5 but is sleeping a lot. He has severe osteoporosis and has had 3 back surgeries plus many other problems. He was an extremely healthy man. Our family doctor has been very supportive. Knows the damage the prednisone is causing but he is a zombie w/o it. It has been a rough three years. We almost lost him 2 or 3 times. We will celebrate our 59th wedding anniversary today.

  • Linda November 19, 2014, 6:32 pm

    I have mild lupus. My doctor has tried several other medications on me to control the flare-ups. I was unable to tolerate them, so I was on prednisone which worked wonderfully for me. No side-effects at all. But, because I don’t want to be on any medications, I decided to wean myself off. I did it very gradually.

    This is day 18 of being off. I am exhausted, achy all over as I am in a mild flare-up and fighting with depression. This site has been so helpful for me and given me hope to continue to deal with these symptoms. I feel so sad for so many of you as I read your stories, although they have given me hope.

  • Tom November 23, 2014, 7:25 pm

    Quite frankly, I’m freaking out after reading these withdrawal symptoms. I have been on a 20mg dose for a week now, with no tappering. I was given the doses to deal with extreme canker sores in my mouth. I have read that almost everyone who comes off of prednisone have withdrawn symptoms. Today was my last day of taking this medication, I feel super healthy as of right now. But after reading all of these stories dealing with withdrawn symptoms, I’m pretty scare of the withdrawn affects that I have yet to feel.

    • Kim June 5, 2015, 5:08 pm

      Don’t freak out, Tom. I took 6 days of 10mg with a taper for an eye allergy. I felt great on the stuff with lots of energy. Today is my 2nd day off of it and I’m just tired (fatigue) and not hungry. But I keep a balanced diet anyway and stay lightly active (running errands, cleaning house). No other symptoms. It’s kind of like how you feel just before you get sick…a little rundown.

      Just get plenty of rest and light exercise and eat balanced. Fruits, vegies, meat, and oatmeal seem to be really helpful in restoring my energy. And Balance Bars and mixed nuts are good to have on hand to help with the dip in energy. I even drink a few Cokes a week and they actually help a lot! :). Don’t stress. Fatigue is the main thing. It’s no big deal.

  • Sammy November 25, 2014, 5:39 am

    Hi, I am searching for answers to how long prednisone stay in the body after stopping the drug. I was on 80mg daily for two weeks for thrombocytopenia. It’s an auto immune problem where my platelet counts were very low. My levels dropped to 1000 count and had spontaneous internal bleeding. I was given prednisone and anti seizure meds. I didn’t experience the shaking and anxiety many people suffered from on prednisone.

    I have been tapering slowly for the last 2-3 months from 80 -60-40-20-15-10-5 mg daily for a week span at each reduction. I did go a bit crazed with the blurry vision and the mind fog. Told the first doctor and it wasn’t taken seriously. Nagged her to give me a script for a glucometer. The prednisone increase my blood sugar levels and had to take more meds to control it. A second doctor recommended mylanta after breakfast and before the prednisone to soothe the digestive tracts.

    Another side effect is I been gaining 1-2 pounds per week with prednisone. I look like I’m pregnant with the barrow belly and a fuller moon face. Been trying for 2 weeks to lose weight on elliptical but failed. Actually gained 3 pounds for my efforts. I do have joint pains but it’s not so bad. This is my first day off prednisone. So far, so good. Waiting for the drug to cycle out of my system so I can lose the weight.

    • GLOOM November 26, 2014, 9:37 pm

      In most cases, the prednisone should be fully “out of your body” within a day after stopping the drug. The half-life of prednisone is relatively short, thus it clears from your system quickly. The withdrawal symptoms are not from the drug still being in your system, rather your body attempting to revert back to standard functioning after the changes induced by prednisone. In some cases, it can take awhile before normative functioning is restored. Best of luck.

  • Jim November 26, 2014, 2:17 am

    I too am coming off prednisone after being on it for 5 years for poly myalgia. Worked well but my specialist hates the stuff with a passion. I am currently on 2 mg a day having reduced slowly from 6mg a day but the nausea and lack of appetite has caused me to lose 6 kg in 1 1/2 weeks. That won’t hurt except for the nausea and today I have the worst headache I can remember. Two panadine forte seems to be working but I am desperate to get off the stuff completely. I have the start of cataracts and skin problems and I now have low bone calcium to the point where I have osteoporosis, and now I am being treated for that. -Jim

  • Andrea November 28, 2014, 12:06 am

    I took a nasal steroid that caused all kinds of terrible side effects: Gastritis, muscular pain (neck, arm and chest), EXTREME fatigue, etc. It was awful and took me three weeks to figure out that it was the nasal steroid. This stuff is poison!! Tapered down–but it definitely messed with my blood sugar levels and blood pressure causing lightheaded feelings (which I despise) and dizziness. The fatigue is not as bad as when on the actual steroid, but I definitely am much more sedentary while ridding my body of this horrible med.

  • Elaine November 29, 2014, 2:10 am

    I have been on prednisone for two years and am now tapering at a rate of 1 mg per week. So far the withdrawal symptoms haven’t been too bad and I am now down to 4 mg/day. I have gone through periods of extreme fatigue, I believe the worst has passed on that front but there were days I couldn’t get out of bed and managed to sleep 18 – 20 hours a day. I now sleep 10-12 hours a day which is normal as I am struggling to get a rheumatoid arthritis flare under control. The only other withdrawal symptom from the prednisone is a full body rash.

    Actually it’s more like a full body itch, constantly scratching, it drives me nuts. I’ll be glad when that goes away. I have noticed a big decrease in appetite which will hopefully translate into losing the weight I gained while on prednisone. A lot of people find prednisone evil. I tend to think of it as the drug I love to hate. It helped me so much to get my inflammation under control but the side effects were awful. Hopefully I’ll be off it for good.

  • Dave H December 2, 2014, 4:45 pm

    I read these comments with interest as I have been on prednisone for 2 years with Polymyalgia/Rheumatica but my depression has been increasing lately & putting a long happy marriage at risk. I need to get of these as soon as possible but looks like I still have several months to go without risking cold turkey. I hope everyone understands & keep patience with this Grumpy old sod in the meantime! Then they can finally start trying to guess again what I do have as the specialist has already told me he thinks the original diagnosis was wrong.

  • Judie December 2, 2014, 8:09 pm

    I was on 25 mg of prednisone for 11 days. My doctor gave me a prescription for a slow two month withdrawal. Unwisely, because of severe intestinal symptoms, I quit the prednisone cold turkey. My symptoms are similar to many others above. Has anyone else had a similar experience, that is, the same doage and time on the medication? This is my third day off. Any idea of how long before I feel normal again?

    • Darlene December 11, 2014, 6:23 pm

      @ Judie, I am so sorry you feel this way. I had posted above a few months ago. It took me a few months and I am still not normal. I went to a gastro doc which took forever to get into and I had an endoscopy which showed gastritis. My whole digestive system was messed up from Prednisone and a Cortisone shot in August. My gyno sent me to an endocrinologist.

      Almost two months after stopping pred my cortisol was 22.It was the high end of normal and ACTH was 15. I just had it checked last Friday and my cortisol was 10.5 and ACTH 13. I have to now go for an ACTH stim test to see if I now suffer from Secondary adrenal insufficiency from this poison. Just keep an eye on your self and do not be surprised if you have anxiety weeks and weeks after these pills and feel crazy.I lost a bunch of weight coming off of prednisone.

      It affected me differently than most. I am scared that I now will have messed up endocrine system for life. All of this was in a two week period and doctors assured me it was fine. It takes longer than the double time on it as they say. It really affected me. My hair has been falling out for almost 4 months now. It also messed up my menstrual cycles. I had them but theye were weird. Hope you feel better.

  • Jeanne Robbins December 3, 2014, 6:45 am

    I have been on Panafcort for 16 years, between 10 mg and 5 mg a day dosage, I am desperate to get off because my skin has thinned on my arms so badly I only have to slightly knock myself and I have skin peeling and bleeding. I have been taking it for RA, but I have had enough. I just cannot do this any longer. I have to wear long sleeved tops all of the time because of the lacerations and bruising and I feel like a freak. Also after all of these years I am starting to develop moon face. Can anyone suggest anything, I will taper the dose of course, and not go cold turkey. Yes, the drug does help the RA, but it is a “good boy” / “bad boy” drug – a bit of a monster in reality.

  • CrimsonCried December 5, 2014, 4:29 pm

    I’m so happy I found this site to help explain why I’m feeling the way I do, all due to the dreaded Prednisone. My journey began in late March of ’14, while outdoors grilling and I just happened to inhale a fuzzy tree spore, one of millions we have floating around during the early Spring months here in this area. They look much like snowflakes, but they’re not. Within 10 minutes, I began to experience the most annoying, tickling cough, and nothing would suppress it. In the hours and days to follow, my condition turned into what I believed to be bronchitis or something similar to pneumonia, though this was different.

    I battled it for six+ weeks, continuing to go from bad to even worse with each passing day, and I was losing my ability to breathe, as well. Near the end of my first round of what I’ve now been diagnosed with as allergic asthma, I was unable to lie down at all, or much less get any sleep, until that April morning when I finally asked my husband to call 911 NOW to send an ambulance. He offered to drive me, but I needed the oxygen immediately or sooner! I could not draw a single cleansing breath, and I was literally dying. Thankfully, while we live deep in the woods, the nearest hospital is only about 10 minutes away.

    I was treated with blessed oxygen in the ambulance, but all of my vitals were skewed. They first tried the nasal type of oxygen delivery, but had to slap a mask on me because I was slipping away (ALS-Level 1). Once I was in the ER, I’d never seen a staff work so quickly and efficiently, but while they were doing all of that, they’d given me a massive shot of corticosteroids, then some breathing treatments, had x-rays, blood drawn, the full work up. Shortly thereafter, once stabilized, I was prescribed Prednisone, and was then released. I argued profusely against it, asking if there was anything else I could take orally instead.

    No. I’d heard horror stories about it several times over the years, yet never gave it too much thought because it really didn’t pertain to me at the time. However, I did not forget. I was on a tapering dosage for two weeks, don’t remember the mg strength, but as each of those fourteen days passed, I got a little more temperamental until the afternoon of that very last dose, when I blew up in a rage of anger over nothing. I don’t even recall what it was. Less than two months later, the same story was repeated, although I didn’t inhale a tree spore that time. Same scenario as before, however, the hospital kept me overnight for test results, more shots, respiratory therapy, and so on in an attempt to diagnose the underlying condition which was causing such life threatening asthma attacks.

    Nothing was found, yet I had even more corticosteroids injected and another tapering round of Prednisone. That was in early September. It is now early December, and I’m getting it again. I’m still suffering withdrawals from my second attack, such as the considerably noticeable weight gain to where no clothing fits, the 8 months pregnant baby bump look (at age 56!!), the facial and general all over swelling and those awful “cankles,” in addition to high anxiety and dread, fearing I may have to begin the entire ordeal all over again. I flat out refuse to ever allow that (speaking only for myself) evil toxin to be administered to me in any manner, as I’m about half convinced I’m allergic to IT as well!

    I have both home based and portable oxygen, emergency inhalers, a nebulizer, masks, etc., but nothing’s helping, and I’m scared to death of what the next few weeks have in store for me. Appears I’m allergic to breathing at this point, and also at my wit’s end. I’m hosting Christmas festivities for 30-35 family members and friends once again this year, and my plan is to keep fighting this. If I absolutely must go to the ER again, I’m hoping with all of my heart to hold off, if at all possible, and do it a few days before our gathering on Christmas Eve, because I shouldn’t have the unpredictable rabid, Prednisone crazies yet…I hope.

  • john December 10, 2014, 11:34 pm

    I was prescribed Prednisone 30 mg for 8 days, 2 days ago. I have taken it for two days but after reading this I am in panic I need to stop asap. I suffered from cough for 6 weeks and this helped me within 24 hours. Can breath again. I am prone to anxiety attacks and depression and can not even imagine going through that hell. I was not advised about tapering. I am going to start tomorrow and stop all together.

    I should have been advised about this. I do have a head rush after taking 30 mg, eat a lot, am confused and disorientated. All in all I have taken 30 mg for 2 days and I ma going to take 10 mg for the next 2. I want to sop after that. Please help. Should I do this or should I continue the same (30 mg) for eight days and then cold turkey?

    • joyce March 22, 2015, 3:09 pm

      NEVER quit prednisone cold turkey. You could shut down your adrenals and die! Always…wean SLOWLY!

  • Roya December 11, 2014, 4:42 am

    I’ve never written on one of these before but if it can help someone else look at EVERY OTHER OPTION before taking this drug, it’s worth it. I was given 60mg for 7 days for bronchitis. No taper. My right side of my body got numb. My ears clogged. I was close to fainting. Felt like the flu and my head was in the most intense vise anyone can imagine. It was so intense it was effort to move my jaw. Scale of 1-10 in physical pain…an 8.

    I did have to teach for hours on that day, once the 60mg got back in my system, I willed my way through and was able to stand all day. The next morning was a moment of reprieve. I was put back on an infusion on 60mg all at once to try to get me back for 2 days then 50 for 2 days etc til tapered to 5. It’s been 3 days and my head feels like it’s got a constant singe of fire on it. I’m sweating on and off. I can’t control the reaction to nearly faint and not be able to lift my head off the pillow.

    I can’t trust myself to drive or be alone w my toddler because its like being on an up and down physical roller coaster I can’t predict or control. Suddenly I may not be able to stand and vision becomes a bit blurry. I HAVE FAITH this will all be a distant memory in a week or less. I am MADDENED at the casual nature with such potential POISON. Just weigh your options as I understand it’s not the same for everyone but you do take the chance and IF YOU DO…NO MATTER WHAT…TAPER OFF.

    • john December 12, 2014, 1:49 am

      Thank you Roya. I took it for two days. This morning I decided not to take the rest of it and feel so much better for it. I was advised by my GP i did not need to taper off as it was a very short course. It was a strange place I found myself at and I did not like it. I was at work yesterday and I lost it. Could not remember who I was calling. Sort of high and confused. My heart was beating fast and I had blurry vision. Unpleasant experience. I did not sleep last night again and had even more confusing morning. Could not face another six days of it. As you say, any other option … Many thanks.

      • Hilary March 16, 2015, 7:52 am

        Just finishing my third course of pred since December last ( three courses in three months! ) each course was a week starting 40mg a day for three days and tapering off over a week. First time got great relief from bad cough and sinusitis with only mild side effects… cure didn’t last and was back on again after four weeks. This time side effects kicked in, but passed quickly enough and cough and sinusitis calmed.

        Thought I was through all symptoms and side effects after two weeks and was getting myself geared up to normal life then bang! My husband caught a relatively harmless virus which only affected him for two days but it hit me like a ton of bricks and I was back again to square one, another dose of pred. My warning is, immune system is obviously very weak after a course of pred I was a sitting duck for every bug in the air. Just finished my last pred three days ago and withdrawals have kicked in big time…

        Anxiety, hunger, no taste, blurred vision and dizziness, also troubling dreams and depression and barking at everyone for very little reason. I cannot understand why I was put on such severe medication for a virus. It is really tough getting it out of your system and from what I read here, this can continue for a long time. Never again, there must be some homeopathic alternative out there. Anyone heard of anything?

  • Oscar December 12, 2014, 2:01 pm

    Off predisone after two and a half years. Started with 10 mg for PMR. Came off slowly but now I have such sore legs and knees. Is this a common side effect or I may have developed osteoartitis? Haven’t been back to the doctor’s and trying to get through it.

  • luciano December 19, 2014, 9:33 pm

    I was on prednisone for only 5 days 50mg per day for a sinus infection. The doctor told me I can quit cold turkey as I wasn’t on it for longer than 7 days. After I quit cold turkey withdrawal symptoms were horrible and almost unbearable. I was emotional angry confused, depressed fell like crying or arguing all the time and I didn’t have any motivation. I suffered all this just for having a sinus infection and the doctor not telling me side effects of prednisone. I’ve been off it for a week and still do not feel a hundred percent myself. I would never take this medication again and I would never recommend it to anyone unless it’s a life or death situation. Doctors shouldn’t prescribe this to anyone unless it’s the last resort. Others should be prosecuted as this medication can and will ruin the quality of someone’s life.

  • M December 21, 2014, 9:57 am

    Well now I’m wondering why I’m feeling so sh*tty. I have had two courses of steroids in about five weeks due to a neck injury during a massage (yes, it can happen). I have a pinched nerve in my C6/7 and still waiting for it to improve. The steroids really worked for my inflammation and got rid of the excruciating pain that I had from this. Worst pain I’ve ever had except for childbirth. I am having the worst anxiety and depression. I couldn’t figure out what is wrong with me until finally googling withdrawal symptoms.

    I can’t sleep (not that I could while taking it anyway) and I can’t get in the Christmas spirit. I don’t give a flying sh*t about pissing people off and that is so not me. I don’t want to decorate, I’m short-tempered, I’m ready to rip people’s faces off and can’t wait for work this upcoming week – I hope I don’t mouth off at the wrong time. I am one of the happiest people on the planet and I cannot believe that this has affected me this way. I never ever am this way.

    All the other comments are making me pretty nervous. Bad enough the effects of the pinched nerve but feeling like I’m coming apart at the seams is not good in my line of work. The weight loss is a good thing…lol…but seriously. Hope everyone is starting to feel better. I was on some kind of pack for 6 days, tapered off. Prednisone for 12 days, 60 mg for 3 days, 40 for 3, 20 for 3 and then 10 for 3.

    I stopped taking it three days ago and I am seeing anxiety and depression and the short-temper that I haven’t seen in years. Reminds me of when I was married to my ex (LOL). For me to not have the Christmas spirit… that makes it worse. I took a sleep aid last night, muscle relaxant and a pain reliever. Wide awake after three hours. I’m cleaning and pulling out decorations to finish putting some up. This does not bode well for the day.

  • Mel December 22, 2014, 8:43 am

    I was given Prednisone for 5 days due to an abscess in my ear, and now I regret ever going to the doctor! I stopped taking the drug 2 days ago, and less than 12 hours after taking the dose, my entire upper body felt bruised and very sensitive to the touch. It started with the front of my neck, and moved down into my ribs, chest, shoulders and lower back. It got to the point where I was struggling to lie down without wincing. How is it possible to suffer such bad withdrawal symptoms after such a short dosage? I’ve also been shaking and my heart rate has been increased – Randomly started crying last night as well? Which is not like me at all. I will NEVER take this medication again, and wish that the doctor had actually explained the side effects before prescribing it.

  • Dale December 25, 2014, 3:53 pm

    I was prescribed Prednisone in 2012 for PMR. Dosage was 20mg. Tapered starting immediately. Pain would return and Rhuematoligist upped dosage to 20 again with taper after 1 month. Since my last taper start, rheumatoligist said no longer have PMR. Feel like crap. Sore muscles, achy, tired. Sore shoulder for 3 months, had ultrasound that found no problems. Went away as fast as it came with no reason, then hip started hurting for no reason, then neck then chest and back.

    Comes and goes with no reason. Doctor thinks I’m crazy. So happy to have found this site. I justifies my feelings. I thought, I had an injury, a disease, a pinched nerve, cancer, flu, low threshold for pain, was just a complainer, PMR, or was just crazy. After reading your posts, I realize what I have is just from the taper off Prednisone. My symptoms are not as bad as many of yours, I really empathize with your struggles.

    The knowledge will not make the pain go away, but at least I will have the peace of mind of knowing what’s happening to me. I am currently at 3mg and plan to go to 2 today, 1 on New Years Day and 0 on January 5. I will put up with the symptoms secure in the knowledge that they will eventually go away. Thanks to all for helping me to find my problem.

  • Lyn December 28, 2014, 4:18 am

    I’ve been on prednisone since 2006 for rheumatoid arthritis. I ran out and forgot to fill it… that was a big mistake. I am weak, out of breath, my stomach hurts, I have a headache and the joint and muscle pain is indescribable.

  • Chere December 29, 2014, 2:53 am

    I have been on Prednisone since June 2012. I’m down to 2.5 mg per day. When I first started taking it, I was taking 10 mg twice a day. When my RA flares up, my doctor increases the dosage for short period of time. She told me that I should be able to stop since the dosage is so small. I thought I’d just stop a couple of days ago, but woke up with a horrible headache right behind my right ear.

    So, I guess I need to drop it to even smaller doses before I stop. My sister, who is a registered nurse, griped at me and told me I couldn’t just stop. Guess I’ll need to watch my blood pressure too. It never was high until Prednisone and I’m taking meds to bring it down. Maybe I won’t need the blood pressure meds once I’m off.

    • Tony December 30, 2014, 2:16 pm

      Hi – I was prescribed 70mg per day of Prednisolone (which I guess must be the same as Prednisone) for about 16 weeks (for auto immune haemolytic anaemia) and then dropped down by 10mg per day for a week (ie. 60mg per day for a week, then 50mg per day for a week – then 40mg – 30mg – 20mg – 10mg) until I was down to 5mg per day for a week. I was then on 5mg every other day for a week then I stopped completely about 4 weeks ago. My symptoms are very much like influenza, i.e. joint and muscle aches, headache and nausea but the worst of it is I can’t walk very far at all without getting exhausted and a very aching lower back. From the above posts, it’s pretty clear these must be withdrawal symptoms but does anyone know how long they last for – especially the bad back?

      • Beverly June 29, 2015, 8:59 pm

        Hi Tony, I only saw one comment from you. I also have autoimmune hemolytic anemia due to lgG. First I was put in the hospital and given two blood transfusions. Then my doctor put me on steroids for over a year. I underwent 4 injections of Rituximab (kind of like chemo). I have been off the steroids for about 3 months. My body hurts, feet and calfs feel swollen, hurts when I walk. Shoulder hurts making my neck hurt. How are you doing? Have you had any further problems? I do not know anyone else with this condition. Hope you are doing well and have good news for me. Sincerely, Beverly

        • Laura September 1, 2015, 3:06 am

          Beverly -My husband was on prednisone for 1 1/2 years for hemolytic anemia. While he tolerated it well, and his hemoglobin is now really great, coming off of it has been horrible. He was down to 2.5 mg per day then off for about 6 weeks. Then the withdrawal kicked in. He was absolutely exhausted. He itched all over.

          He went back on and felt better immediately. He just quit again and now is back to being exhausted. this time he feels like he has a bowl obstruction. I read it is called ilius. He just took a 10mg, to see if it helps. If the past is any indication, I feel it will. He just is non-functional. It’s awful that something that saved his life is now ruining it. I will check back to see how you are. Best of luck to you.

  • Kayleigh January 2, 2015, 12:59 am

    I was on 40mg of prednisone for 5 days then tapered myself down to 20mg for 2 days. My original dosage was 40 mg for 6 days then off cold turkey. I’ve been on this frequently (at least once a year) for my asthma. I knew better then to cut it off like that. I usually get prescribed more of a taper. This time being on it had been hell! I have anxiety disorder anyways, out a steroid on top of it and I’m crawling out of my skin.

    I’ve been off of it for 4 days now and am still getting anxiety attacks! My whole body had felt like a giant bruise and I’m super tired. A new symptom is my left arm feeling weak ( like it fell asleep ). It comes and goes, but is very unnerving! I feel like I can’t grip anything. Add a racing heart to that and I thought I was having a heart attack! This medication is horrible. I hate taking it :( and to think they prescribe this to kids too!

  • Sue Koningen January 7, 2015, 11:18 pm

    I have been experiencing all of the side effects as listed here as I reduce my long term use of prednisone, and feel so thankful that I found this site. I now know that I am not imagining this, it is real and I feel that I can go back to my doctor and make her more aware of the dangers involved with withdrawal from this drug. Thank you so much.

    • Nella October 2, 2015, 4:47 am

      Good luck with that plan!!!

  • Carla January 10, 2015, 3:53 am

    One day I went to the ER b/c of my asthma. The md gave me prednisone 60mg once every day for 5 days. Literally the next day off it the WORST side effects. The worst body ache. I felt like I did an extreme full body workout, had a migraine and a bit anxious. The second day I became faint and dizzy. I had a FULL BLOWN anxiety attack! My heart was beating a mile a minute. I felt like my heart was going to come out of my chest.

    I thought I was going to die. I head back to the ER they do a cat scan,x ray, blood test, urine test everything came back normal. They could “supposedly” not figure out why my anxiety was high. I told them is probably a reaction to the prednisone, but of course they are not going to admit that. They discharged me with an ibuprofen RX! They did not give me anything for the anxiety or for my irregular heartbeat. I call my primary and she prescribes me xanax 0.025 and propranolol 10mg for my heart. The pripranolol helped with the heart and the xanax helped for a few hours.

    At around 11 PM I get another full blown anxiety attack. I was mess!my body was shaking I thought I was doomed and was going to die. I cried and cried I thought I was going crazy. I call 911 and head back to the ER. They FINALLY gave some ativan to control the anxiety. This experience with prednisone is the MOST HORRIBLE experience I’ve EVER felt in my entire life. It has left me mentally broken with anxiety. I will never wish this experience to my worst enemy. Its been 5 days since my last dose and I’m STILL anxious.

    • Ken January 13, 2015, 7:07 pm

      Just came off three days of prednisone for 5 days at 40mg to control my asthma, I have been on prednisone before. But getting older now My wife and I both notice the withdrawal effects. I thought it was just me. The withdrawals range from mood changes to suicidal thoughts. Will I get back to myself? Worried!

  • Hannah January 11, 2015, 1:29 pm

    I have been on prednisone on and off for two years because of chronic hives. My hives are due to autoimmune issues. I woke up one morning with them and had never had them before. Most people get a few and they go away on there own or go away with a prednisone taper pack. Not me! I was on 60mg for weeks. My hives were debilitating in the fact they attack my joints, lips, eyes, and cover my entire body.

    I have been to 9 doctors, been in ICU for angeodema, and missed countless days of work (I am a teacher and worked sick for years until I got hives). I have been on rounds of antihistamines , immune suppressant drugs, and shots. Prednisone is the only thing that works when switching medications. The last round has been 8 months and I am tampering now from 60mg. I have gained 45lbs during this last round. I am down to 2.5mg a day and feel like I am dying from the inside out.

    My anxiety is high, muscle and joint pain are severe, and I have had bouts of nausea. The hardest thing is hiding these symptoms from my 2 year old and students at school. It hurts to carry my own child, especially up and down stairs. I feel exhausted and just want to sleep. I really feel doctors should be more upfront about the initial side effects and the side effects that can occur when you taper off after a long period of time.

    I have said a million times this is the best and worst drug out there. Best in the fact I wasn’t in pain and could function without pain from the hives, and worst for the side effects. I have learned you must become your own advocate for everything. Research is key before taking or trying anything. Lesson learned! I never want to be on this again!

  • Jason January 12, 2015, 3:55 pm

    Prednisone is now on my official “do not prescribe” list. I had sudden deafness in one ear, so my ENT put me on a high dose, per the text book diagnosis. Never have I had such a terrible reaction. I was on a: 60mg X 5 day, 50mg X 5 day, 40mg X 4 day, 20mg X 4 day, 10mg X 4 day. I’m normally a funny, fun loving person that’s easy going and playful. The first 3 days, I felt “roid rage” where I was mad at everything and aggressive, no matter how insignificant and petty it was. I drove my wife crazy and made my kids scared.

    I had to avoid them just so I wouldn’t chew them out over nothing. By day 4, deep, dark depression hit. REALLY bad. I couldn’t get out of bed. It was horrible. I’m never a depressed kind of person. By day 6 my mind turned to suicidal thoughts. I’m lucky, I had enough awareness of myself and the side effects of this drug that not only did I tell me wife about how stupid I thought the aggression was, but I kept a telling her my running notation of everything that wasn’t me, aggression, anger, depression, and the suicidal thoughts.

    I also called the doctor as soon as I realized how bad it was, my wife helped me out with that too. They tapered me off very fast, which helped with the mood swings, depression, and suicidal thoughts, but, now I’m left feeling burned out. I’m tired, I want to sleep in every morning, my muscles hurt, my joints ache, I have cluster headaches, heartburn, and after all of this, I still can’t hear out of my ear. So I essentially went through all of this for nothing. This was NOT worth it.

  • Lynn January 12, 2015, 9:28 pm

    I’ve been on 10mg of prednisone for 1 1/2 years. I have an autoimmune disorder. I’m trying to taper 1 mg per week. I’ve had nearly every withdrawal symptom except suicide and vomiting. I’m down to 2 mg per day now. I’m concerned that some of the side effects mean that because of the autoimmune condition I won’t be able to be without the pred. I want to be off this drug. I’m taking Methotrexate so I’m hoping I can be free of the pred soon. I guess I don’t have a question just appreciate reading the other comments and having a place to vent :) I’m hoping all of you can be successful :)

    • Ghazala November 29, 2015, 10:33 am

      Hi. I also have an autoimmune disease and on 50 mg of Pred. I’m hoping to go down by 10 mg each week until I’m off. Then I’ll be put on the Methotrexate. Do you have any side affects on the new drug you’re on?

  • Pam January 13, 2015, 9:15 am

    WORST DRUG ON THE PLANET!! I was on 65 mg daily for 2 months and was weaned off too quickly (10 mg/week). I took my last dose 12/27/14 and the side effects are horrendous: weight loss, shaking, insomnia, overwhelming depression, headaches among others. I’ve slept 4 hours in 2 days. It’s 4:10 am now and I haven’t been to sleep. I saw an endocrinologist yesterday and I’m having an a.m. Cortisol level drawn to see if my adrenals are shot. If only I could turn back time, I would NEVER have taken Prednisone. I pray all of us soon recover from this hell.

  • Jack Burton January 13, 2015, 6:00 pm

    I too have had a rough prednisone trip. I was already having enough problems to begin with and on top of it all the prednisone did nothing to help! I started feeling this general shakiness all throughout my body, increased heavier heart rate, and a kind of detached, panicky emotional state. These symptoms still are persisting now after a little over two weeks off this drug. I was on a short tapering course starting at 60mg for 3 days and working my way down to 10mg over the course of 11 days.

    I stuck it out because everyone tells you not suddenly quit. Like a lot of people here, I am filled with deep regret for having taken it and am desperate for a time machine to take me back to stop myself. Honestly, hard drugs aren’t as bad as this. I’d take them over this in an instant. The toughest thing is that symptoms like the shakiness: they’re just sitting there. Not getting any better or worse.

    Pretty scary. Anyway, we have to trust that our bodies know their baseline and have the natural inclination to return to it. If I recall correctly, Prednisone is fat soluble, so it’s gonna sit around in our bodies for a while as they wash this poison out. I know it helps a lot of people and it’s valuable in that regard, but for those of us sensitive to it, it is poison. I try to exercise, eat healthy, basically give my body everything it needs to handle this.

  • carrie January 14, 2015, 2:20 am

    I was on prednisone for 5 days for an ear infection. I was told to take 40mg for the 5 days. After the first 3 days I couldn’t handle it anymore, and went back to urgent care due to major panic attacks, and they told me to drop it to 20mg for the next 4 days. I did this for 2 more days and had to stop. I had major panic attacks, couldn’t sleep, had blurred vision and many other side effects. I was tested for everything, and my dr said it’s just me getting over the prednisone… it’s now been a month and a half and I am still having major anxiety issues. Anyone else have this happen and how long did it last? I can’t sleep because of it!

    • Jack Burton January 14, 2015, 2:29 pm

      I’m having leftover psychological issues as well, Carrie. My guess is since prednisone is a synthetic version of the stress hormone cortisol that it can easily traumatize your body and psychology. Coming at it from that angle, I’ve been trying to focus on what I can to bring my body back to baseline both physically and mentally. That’s all we can do. Like I said in my post, Prednisone is fat soluble so it can take a while to actually purge it out of your system. So eating healthy, exercising, drinking lots of water, etc… Providing everything we can to our bodies to normalize themselves. I’m sorry you are having a rough time too!

      • Paul January 15, 2015, 6:30 am

        I am 49 days off Prednisone after 2 yrs of treatment for Behcet’s, a less-known autoimmune disorder. My dosage was 25mg initially, tapering by 5 mg per day (5 days total) with remissions (no drugs) usually lasting anywhere from 3 to 12 days, then I would have to initiate the same regimen for symptom treatment again (and again) Sometimes I would just start at 5 mg and go 5 days at that, successfully to break the cycle. Because of my experience and past as a substance abuse counselor, I am on board with Jack in his pointing out that this drug is a fat-soluble compound and appears to be able to be stored in fatty-tissues, which affects length of lingering withdrawals.

        My withdrawal experience/time period and most others here seem to overwhelmingly support that. The idea is that some drugs are capable of “binding” with fats stored in our bodies and seem to take longer to leave the body than others that are not fat-based. The same model is utilized, to some extent, in drug-testing and defining treatment modalities in substance-abuse treatment models for different drugs. Anyway, I thought that with breaks of up to 10 days a couple of times a month over my entire treatment period, that it would allow my body to “learn” to produce it’s own hormones again.

        I could not have been more wrong. I am so grateful to all of you who have courageously shared here what published medical journals will not. Sadly, most doctors are paid to sell drugs, not heal people. We must help heal ourselves and continue to seek those who can help. My own current withdrawal symptoms are: impaired short-term memory, lack of appetite, sporadic fevers, severe depression w/suicidal thoughts, muscle aches in arms, ankles, calves, low back, slight headaches on occasion, very high levels of fatigue and anxiety. I also agree with the above that all bodies, habits, diets and and tolerance thresholds are different and react differently.

        It seems that we might all avail ourselves of the most valid and useful information for our own personal challenge, rally our allies, then make informed, healthy, thoughtful decisions. My next move, as long as I have symptoms manageable with OTC stuff (i.e. without Prednisone), is to go on a safe, sensible, I repeat…., SAFE, SENSIBLE cleansing fast to eliminate as much of the drug from my body as I can for now and see what life feels like. After 2 yrs in the hole, I want to at least get a drug-free baseline, if I can, for reference in the future.

        Now for the good part – After 6 + weeks, I can feel small improvements, but it’s weird. It’s not overall/all the time… It’s just like… the periodic windows of feeling more normal are getting longer/wider than before. I have no idea what the future will bring, but my own personal treatment alternative involving the taking of Colchicine (a type of poison) fills me with great inspiration to press on. You all inspire me to try harder. Ne jamais lacher le reve. (Never let go of the dream) ever.

        • Mary July 10, 2015, 4:34 pm

          Carrie, Jack, and Paul… How is everyone feeling? My side effect is the anxiety. I have cleaned up my diet (still not perfect), exercise (but not a lot). Unfortunately work is stressful and this does not help my anxiety. Has anyone had any success with the fasting?

  • Harry January 14, 2015, 6:24 pm

    It has been 12 days after weaning off of prednisone. I now am going through a tough time of it. I have lost all of my ambition and do not want to do much of anything other than sleep. My days are no longer days but nothing more then a continuation from the last time I awoke. I move only by instinct only to eat and that’s very little. I’m always thirsty and prefer liquids rather then solids. I feel as if I’m in another dimension and if it weren’t for the pain in my joints I believe that another dimension would be indeed a reality.

    If it were not for my son, I would be lost as he keeps me straight. I feel as if I’m at death’s door and wonder whether I will ever awake from this nightmare again. However, I try to soften the pain with over the counter pain killers that help some what. I believe the doctors do not know how to cope with my problem as the say nothing. If it weren’t for this website I still would be taking prednisone.

  • Steve D January 17, 2015, 6:14 pm

    Gastroenterologist put me on Prednisone for ulcerative colitis / crohn’s disease. Went as high as 60mg. 3+ years. Recently began to taper down by 5mg. Presently at 30mg. I also take Zoloft (for around 10 years) for anxiety / panic attacks. As the tapering down of Prednisone began, the anxiety / panic has returned in full force. Has anyone else had this reaction? The Zoloft had given me my life back again. Now I fear / feel I’m becoming agoraphobic. If I had known about these side-effects and the possible return of panic, I’d never have started with Prednisone…

    • sarah February 8, 2016, 5:16 am

      I have taken it for many years for a rare IBD called collagenous colitis. Beware that the most difficult taper starts when you have reached 10mg because you are a long term user. My GI doc took 6 months to taper me from 10 mg to 5 mg and 9 months to taper from 5 mg to prednisone free.

      I warn you particularly because of your anxiety/panic attacks. You may need to be on one of the anti-anxiety medications when you reach this part in your tapering. I have also read this elsewhere on the internet. Check it out and don’t let your doctor tell you otherwise.

  • Sussie Brand January 22, 2015, 1:45 pm

    I used Prednisone on and off for almost four years. I was weaned off it for 3 months. I stopped more than 2 months ago. I still have the most horrible pains and sometimes feel as if its getting worse. I feel weak, depressed, joint and muscle pain and cramps. My hands and feet hurts. I am going through menopause at the moment and as soon I sweat it feels like I’m allergic to my own sweat. I used Prednisone for a lung condition that was diagnosed after 3 years as Aspergilloses. I so wish I can feel normal again!

  • dollybrown January 29, 2015, 12:53 am

    I took it for 6 days for sciatica and it did control the symptoms, but I am have a difficult time readjusting. I feel exausted… and when I was taking it, my head hurt like heck. It felt like my brain was rattling and I couldn’t sleep. Not something I will take again, even if prescribed.

  • Angelina January 30, 2015, 1:17 am

    Wow, I can barely believe this. I have been asking my doctor about the side effects while actually stopping prednisone and he says what I have been having is not normal, but apparently it is. No appetite (none, zero!!! I could go 3 days without eating), no energy, fatigue, pain, nausea headaches…he only asked me about thrush on the tongue, but didn’t acknowledge any of the other symptoms I described as being prednisone related.

  • adrian February 1, 2015, 4:38 pm

    I got the flu, then bronchitis and asthma complications. I needed the prednisone 2 times in a month and it helped. Then it appears pleurisy set in either from the flu or a reoccurrence of valley fever. Put on 20mg for a week, tapering off to 10mg, then 5mg. I started having symptoms the first night – burning, tingling in hands, torso, legs and feet. Joints ache, just feel like crap. Wake up in the middle of the night with body tingling and pain. I feel like a junkie, want to get off but can’t function. Oh, I forgot about dizziness, shakiness and weakness in my legs. HELP.

  • Holli February 3, 2015, 8:28 pm

    Read a lot of the comments after the fact. I just recently was told I was going through an episode of PTSD. I then the same day contracted poison oak which took several days to show up. I had gone out into the woods to blow off some steam and must have rubbed it all over my face because that is where it first showed up. With my eyes swelling shut, I decided to go western meds… they put me on a pretty aggressive high dosage, which I felt great the first few days after dealing with a lag in energy from the depression/anxiety.

    But by day 6 I had such a horrible reaction (like I’d taken a whole bottle of no-dose) that I stopped cold turkey. Was fine the next day up until night time when the anxiety kicked in big time, my gut felt like it was in knots and no amount of fat/protein would do away with the hunger feeling…just made digestion a b*tch. Finally after another day of high anxiety and not sure where it was coming from. I was watching my thoughts and such, I called and got in with my psychiatrist.

    He practices Cognitive Behavioral therapy (love it and have had great success). He simply commented I had done what I needed to do for the eyes swelling and now we could use some Ativan to help me with the anxiety and to keep myself busy when it came up. Yet, I have been doing this today with great success so far and wanted to share: * after reading about the need for sugar/salt – Instead of going for just heavy, filling foods, I added natural sources of sugar (honey, maple syrup, fruit), but still am keeping the fat/protein (otherwise you risk insulin disturbance and more crazy making).

    If I keep a pretty constant slow intake of sugar (so you don’t spike your insulin), I felt I could manage the anxiety and low energy. I got some Raw Adrenal support at Whole Foods (that has bovine supplements in it), took one pill right away and another after a meal an hour later. Wow, that has helped TREMENDOUSLY. While my anti-anxiety meds helped keep me calm and to calm my gut last night (and am sure I am still benefiting from this), I have been spraying the Rescue remedy stress relief at the first sign of anxiety + get some sugar/salt in me – and I haven’t needed to take any more of the Ativan yet today and it is now 12 noon (last does was .25 11 hours ago).

    The adrenals love salt and potassium. In “Nourishing Traditions,” Sally Fallon suggests drinking a broth of potatoes and zucchini. I’m adding some burdock root, parsley, real sea salt and some maple syrup. To me it seems the anxiety comes in from the body not having any energy supply it can use with the adrenals shut down…so if you can keep the body fueled, at least for me, this is helping. Yes, food didn’t sound appealing at first, but getting the sugar/salt in there has helped tons to wake up my appetite.

    When I was feeling really nauseous, I started slow and gave my body time to respond. This helped tremendously. The body needs fuel, and the nauseous seems to have gone away when it got the fast fuel of sugar. Oh, for the poison oak I am now doing the high dosages of Vitamin C (when you start having the runs back off) and a baking soda/water mix on top for 10 mins and that seems to help. Yes I used prednisone for a reason which at the time I trusted was the right one. My doctor showed me that instead of beating myself and the doctors up for this choice, to trust it and to move on.

    It was me, knowing the body from a holistic standpoint, that decided to do more than even the doctor decided and I’m feeling better in just 3 days after coming off the stuff. I hope this helps someone out there take charge of their health and not buy into all the negative stories that this stuff is evil, the doctors are evil, etc… because those negative, downward spiraling thoughts can cause just as much damage if not more to your health at the moment. Blessings. -Holli

    • Mary July 10, 2015, 4:46 pm

      Thank you Holli for your positive outlook. How are you feeling now? Any other tips and tricks you have learned to help with the anxiety?

  • Gary February 4, 2015, 2:07 am

    I took from 60 to 30 mg of Prednisone for over six months because of chest pain caused by Sarcoidosis. I tapered off by 5 mg every two weeks and reached zero ten days ago. I have experienced most of the withdrawal symptoms described above. I thought I had the flu at first. The headaches, weakness, fatigue, joint pain and anxiety were the worst. This withdrawal is worth it to me because my Sarcoidosis was so much more debilitating. That said, I sure hope I get some relief from these withdrawal symptoms soon.

    • Adela September 30, 2016, 2:53 pm

      Hi Gary, I have been taking Prednisone for about 3 months for Sarcoidosis also. I started with 20 mg, and am now down to 2 mg. In 2 weeks I should be off it completely. Since I was down to 3 mg I have had joint pain, palpitations, high pulse, hot flashes, cold flashes, I get shaky and tired, it’s quite horrible. Was just wondering. How long after you got off it did you feel like you were back to normal again? And did you get any of the Sarcoidosis symptoms back when you quit the steroids? I’d really appreciate a response. Thanks!

  • Katy February 4, 2015, 4:21 am

    This is the worst… I took 5 mg for 18 days. Off 5 days. Back On 4mg for 4 days. Have experienced: Panic attacks, nausea, headaches, severe anxiety. I’m out of work and my thinking is totally distorted. I was taken off of it after 4 days and have a history of bipolar disorder. My psychiatrist increased my Latuda from 20 to 60 my question day. Still very anxious. Trying to stay on top. Any suggestions? Thank you.

  • Anthony February 5, 2015, 2:34 pm

    For an allergic skin reaction, I took Prednisone for 7 days (60 mg daily), then 7 days (40 mg daily) and have been off it now for 2 days. Almost immediately it made me feel off, like my head was a little cloudy. It was manageable, but definitely a concern. After 5 or 6 days I started to experience intermittent knee pain and moderate-level headaches.

    After 10 days, the rash was 90% gone, but the drug itself was becoming more and more of an issue. I felt edgy and lashed out on more than one occasion, completely out of character. After 2 days off of it, I am experiencing the following: fatigue (I slept from 9:45 PM to 7 AM), bad acne (just started today) and intermittently my head feels a little cloudy. I will try to re-post in a week.

  • marky February 6, 2015, 6:48 pm

    I went to a doctor for an allergic reaction that caused a rash. He prescribed me with 60mg a day for 5 days. After the 3rd day I thought I was going insane: very nervous, anxiety, shaky, insomnia… I went to the doctor and told him how I was feeling and he told me to stop taking the medicine. Its been three weeks since I stopped and have never felt more horrible in my life. I feel like my adrenaline is on full speed. I’m hoping that I will be back to my normal self soon. What worries me is that it will take months for that to happen. Feeling pretty crappy. -Makkyo17

  • Amanda February 11, 2015, 10:42 am

    Wow! After reading these comments I feel I must add to them. I was googling the side effects of prednisone withdrawal as my Mother has become terribly depressed after tapering off them to nothing. She is elderly and was prescribed them for Polymyalgia a year or so ago. I hope she comes right soon as when she spoke to me she sounded so low and I can tell she is almost suicidal. She has even given up playing bridge and is just getting no enjoyment from anything whatsoever.

    I am worried it might take her quite some time to come right now. We live in christchurch, New Zealand and she was having a hard enough time after the earthquakes as many were/are as half her street has been red-zoned and demolished. Her Dr should have told her what the side effects might be of this drug. Her Polymalgia was brought on after a bout of suspected Legionnaire’s Disease which was inconclusive, however I believe it was due to the contaminant in the land her house is on.

    It was an old orchard and is classified as being unsuitable to grow veggies on and graze chickens, etc. due to either storage or overuse of Pesticides and so on. The earthquakes brought all to the surface with liquefaction and so on. Of course nobody will ever say much as they are too frightened of being held accountable :-/. Poor Mum.

  • J.Jarvis February 12, 2015, 9:12 pm

    My mother was first prescribed Prednisone for her asthma and COPD 30 years ago. With the exception of a few sporadic years, she has been on it since then. Her average dose was 50mg. That’s 50mg for 30 years. No doctor told her about the side effects. No doctor warned her about long term use. The doctor’s basically said “here, take this miracle drug, it’s perfect”. Now, 30 years later, she has an adrenal deficiency – without AT LEAST 5mg of Prednisone, her body cannot function. She has steroid induced Cushings Syndrome.

    She has osteonecrosis, and is now on a daily injection to fortify her bones. She just healed from 6 months from two broken legs from a fall, and now has 6 fractures in her spine (they’re guess is from sneezing or coughing). Her bones are extremely brittle from steroid use. She has steroid induced type 2 diabetes. She has edema and neuropathy, and water retention, which causes her legs to swell so much that it hurts her to walk, and she sometimes gets interstitial fluid leakage.

    She has steroid induced prolapsed bladder, causing severe incontinence. She has had 2 TIAs (mini strokes). She gets tremors in her hands and head/neck. She also takes an entire plethora of medications to counteract the effects of Prednisone. This has all happened within the last year. And the doctors blame it entirely on long-term Prednisone use. She argued and fought to be taken off the drug, and has tapered down from 50mg to 5mg, going down 5mg/month. She is now in severe withdrawal.

    Her tremors are so intense they look like small seizures. Her speech has become slurred and stuttered. She trips over her sentences and gets confused easily. Her head shakes uncontrollably. We’re actually going to the ER tonight so they can treat her symptoms (its been about two weeks of this). When our doctor suggested we go to the ER, his initial response was “just take 50mg of Prednisone, you’ll feel better instantly. Because of course, when in withdrawal from the drug that’s killing you, take the drug that’s killing you to ease the withdrawal.

    Never ever ever take this drug. Doctors use it as a treat-everything medication, and NEVER warn about the potential complications. It’s a dangerous drug, and it’s killing my mother (who’s only 59, I might add).

    • Tom February 23, 2015, 1:53 am

      Four years on prednisone. Up to 60 a day and now down to 7.5 Took almost a year. I had Adrenal issues and my doctor put me Achtar Gel injections to wake up my Adrenal System. It is called an infant drug and used on infants to stop siezures. Been around for 60 years. I don’t think I could ever get off Steriods with out it. My wife has me on vitamins like vitamin C to help support the Adrenal recovery. Worst thing about steriods is they shut down your Adrenal system. We kind of need it to function when start cutting back the steriods. I am lucky cause I have a great Rumy that get’s it.

  • Howard Hibert February 12, 2015, 11:59 pm

    Have radiculopathy. Neurologist that saw MRI said I needed surgery (pressing on my spinal cord) then the genius prescribes prednisone 60mg x 5 days 40 x3 20 x 3. Was OK till I stopped. Holy sh*t came unglued… was sleepless, dizzy, internal trembling and muscle twitches and pains back, leg, ribs, etc. Its been 5 weeks still have them the symptoms but slowly reducing. I was not in that much pain, but now I am worried I am compromised / not my best for my surgery in a week. What was that Dr thinking putting a patient in a variable Pea soup of side effects prior. Really? Just tells you how some doctors are absolutely clueless about this very dangerous drug.

  • Rita February 14, 2015, 10:48 pm

    I am 84 years old and have had Prednisone weekly packets off and on for over 5 years for COPD. No problem on withdrawing. Unfortunately in September my internist thought I had polymyalgia and started me on 40 mg of Prednisone. Actually I did not object as I called this med “my uppers”. I then developed blurred vision and according to the computer papers he gave me I could become blind. Long story, but had biopsy of right temporal artery which turned out negative! Internist told me to reduce Pred to 35 mgs by 5 mgs every 7 days down to 5 mgs each a week.

    I did so, and even reduced to 3 mgs and 1 mg for a few days. Now I am experiencing acute joint pains, mostly hips, shoulders, very fatigued, losing appetite and also have edema; not just feet and legs, but my entire body. It is very difficult to walk, get dressed, climb into bed. I am on a Lasix type med for the edema and don’t find this problem anywhere in Prednisone withdrawal. Cardiologist’s PA is looking into it. Any suggestions? Hard to find another internist when you are on Medicare. I am sorry for you young people suffering this way.

    • Lawrence collins July 12, 2015, 10:17 pm

      Snap Rita. I am in UK and had the same biopsy. That was July 2013. I was on high dosage of prednisolone for one month then tapered over three months. Result is 2 and a half years later I am still having very serious problems with very weak legs and no vitality. I feel stronger now but walk very slowly because I cannot speed up even though I want to. I read an interesting article about coenzyme Q10 today. Look it up. I am seeing my doc about it next week. I really do not think the docs know enough about prednisolone and they ought not to prescribe it.

  • Loretta February 15, 2015, 9:01 pm

    Hi all. I was put on prednisone for 10 days at 40mg a day with no taper for a viral lung infection that didn’t clear up on its own. I am 3 days past my last dose and I feel like crap. My stomach has these occasional hot burning pains that only last a few seconds, but those are very painful seconds. Nearly doubling over in pain, then my skin hurts all over for awhile after. I have diarrhea, absolutely no energy and my hands are shaky. With 4 kids to raise and a big move ahead of us, this really sucks. I wish I was never put on this drug! I hope the withdrawal symptoms go away soon. Hubby leaves here in a few days for 4-6 weeks and I really hope I can cope.

  • Brian February 17, 2015, 4:27 am

    I have been on Prednisone several times I’m the past 3 years for my Constrictive Bronchiolisis Oblitereans. I really didn’t experience any major withdrawal symptoms until now. Because there are no cures or protocol for my disease my Doctor (just a Primary) and I have been open to trying different things to help, me feel better and improve my well being. Prednisone has help with my breathing and improved my health.

    This time I am experiencing really strong withdrawal side effects though. I started 80mg for 2 weeks and decreased 10mg every two weeks. I am currently at day 12 on the 20mg dosage. I have already started the joint pain and the abdominal cramps. I know that this is the beginning of the side effects and it scares me that they have already started. I also take Azithromycin 250mg along with the prednisone as my regime.

    It helps with the inflammation and also acts as protection because a simple cold will kill me, at this point of my disease. I also know this will be my last time on this regime. I can only do it every 12 months or so. At this point next year my lungs will be completely destroyed be the disease. I can say “yes” even though the prednisone has horrible side effects, both starting (which I get too. Weight gain 25 lbs, severe mood swings, hypertension, insomnia, decreased vision, tremors) and now I get to survive the withdrawal symptoms.

    • Jennifer Youngblood May 4, 2016, 5:11 am

      Brian! I am terribly sorry!! Are you still alive?

  • pat February 19, 2015, 6:51 pm

    I have asthma. My Dr. Has given me 6 cortisone injections over 9 weeks And I have been on three prednisone tapers during this time. I am in day two of the last taper. I’ve had constant dull headaches. Muscle cramping and aching. Weakness of arms and legs. Low back pains. Abdominal pains and fullness in abdominal area. Some increase in bowel movements, but no diarrhea. Fatigue. I’ve been on cortisone and prednisone yearly for asthma exacerbation. But never noted the withdraw symptoms to this degree before. I’m reading this is normal and it could take a while to get my body back to normal. Should I see my doctor? I don’t have to much depression or anxiety. Thanks.

  • Wendy February 21, 2015, 1:49 pm

    I have been off and on prednisone since 2006, before I go on the weaning portion, I am given three days of steroids through an intravenous in the emergency at my local hospital (there is a medical name for the intravenous but I don’t know it off hand), both these medications produce very bad side effects for me. The weaning part starts at 60mg and tapers down to 5mg by the end. I have noticed I am still experiencing the withdrawals and I have not been on prednisone since August 2014, but I am still having the withdrawals.

    I am not sure if this has to do with me being on prednisone since 2006. I don’t like how it makes name feel and how I am short with others around me, and the face to face interactions I have a very hard time with. This is a very good drug for the inflamed eye disease I have, but the side effects on my emotions are very hard to deal with. With this eye disease I have, chances of me going back on prednisone in 2015 is a good possibility since the doctors are still trying to find out the root cause.

  • Joan February 22, 2015, 3:43 pm

    Diagnosed 2 yrs ago with rare connective tissue disease, dermatomyositis, prednisone 60 mg for months, then 40 mg for months 30 mg, 20 mg, 10 mg, 7.5 mg, 5 mg then the withdrawals started. Tried to wean off by 2.5mg, withdrawals were horrible, had to go back up to 7 mg and wean 1 mg a month. I am now down to 1 mg and then March 1 will do every other day 1 mg and be off in April. This regimen is working, with little side effects. You have to give time for the adrenal glands to kick back in, slow is better.

  • elaine February 23, 2015, 4:41 am

    I have only been on Prednisone for 7 days now. I started to cut back the dose a few days ago but I was on 80 mg for the first 3 days. I started to get off the drug and I am now down to one pill a day, but the the pains are awful. My body is in such pain. My ankles, my neck, my back and my chest muscles all hurt. All I want to do is sleep so the pain can go away. The pain is much better tonight but it is still there. I’m moody because the pain is so bad. The spasms are awful. I am starting to find myself just eating and then feeling sick after I eat. This medication is not my favorite and if I have a choice I will never take it again.

  • Nick February 26, 2015, 10:05 am

    I was on prednisone for abot 20 days, starting off with 90 mg and then tapering to 30 mg per day. I was being treated for reversal reaction of Hansens disease MDT treatment which caused inflammation of my joints. After stopping prednisone I feel terrible, I have frequent headaches, muscle ache, low energy, low appetite and trouble sleeping. And no OTC pain medication helps.

    Every evening I feel cold, my body shivers for like an hour at temperature of 70-75, unless I put on layers, pullover some comforter and increase the heat to 80. After some time my body temperature shoots up making me all sweaty and feeling like I have mild fever. Although prednisone did fix my reversal reaction now I’m facing these problems for the last week, all this while taking my MDT medication regularly. Hopefully I recover soon from this withdrawal.

  • Lori February 28, 2015, 6:06 pm

    I am so thankful that I found this discussion and I am writing this with tears in my eyes. At the start of 2015, I battled a serious sinus infection that did not respond to 4 different antibiotics. I was ultimately put on Prednisone for a 5 day treatment. My head hurt badly through the treatment, but I tolerated it until day 4 when the pressure became so intense that I thought I was having a stroke. (I am 49 years old.) My ENT told me not to take the last two doses and that I would “self wean”.

    This was almost 3 weeks ago and I am suffering so badly. My regular doctor put me on ALPRAZOLAM for one week because she believes the prednisone messed me up a lot. This drug did not do much for me and I finished it yesterday. I feel like my shoulders are being pressed and I have constant tension headaches. My heart races and I have such severe anxiety. Is there an end in sight for me at some point? I am so depressed and feel so hopeless like I am going crazy. Please help me. Any advice is appreciated.

  • Rodger February 28, 2015, 11:01 pm

    I was diagnosed with Nephrotic Syndrome, and more specifically, Minimal Change Disease. Prescribed prednisone at 80mg per day originally. Took the drug at varying dosages for over a year. One month ago my Nephrologist (the second by the way) decided it was “poisoning me” and decided it was time for me to quit. At that time I was taking 40mg daily. Did a 3 week taper until I was off the drug. Unbelievable muscle weakness in my legs, between my shoulder blades, my neck and arms!

    A small flight of stairs makes me totally exhausted. Also upon standing I get dizzy to the point of nearly passing out. Blood pressure dropped so low that at times my blood pressure monitor would not register. BP averages 98/74. I also am experiencing diarrhea. Just had to vent. I spend any free time I have sleeping because of exhaustion. Hope no one experiences this to this extent. Been off the drug for one month. Just curious how long this will continue.

  • Kristin March 5, 2015, 12:35 am

    I’m 30 years old, diagnosed Crohns Disease in 2011 (when I was 26) went unmedicated almost the entire time until last August 2014. Went into a pretty bad flare up and was put on 60 mg of Prednisone per day two days after my flare started. This controlled my HORRIBLE Crohns flare within 48 hours and I thought this was a MIRACLE drug! I felt great for the whole first month I was on it! Then I started to hate it.

    I had severe depression, anxiety, “moon face” (swelling and roundness in the face), growth of body hair, shoulders, arms and even the face! These things only added to my insecurity and depression. I had the shakes as well as terrible insomnia. I have to take Ativan and melatonin to even begin to fall asleep before 1 am. My mood swings were so awful I would scream at people and tell them I hated them and threw and hit things. Just not myself at ALL!

    I began to taper 5 mg per week once I started Humira (which I’ve also heard terrible things about) By February I was off the prednisone completely. Now, I have such sever pain all throughout my body. My joints hurt so bad I feel like Im 90, I can barely move my hands in the morning. My neck feels like I slept on it wrong every single day. The pain is just everywhere and everyday it stays the same. Nothing has gotten better and I wonder when and IF I will ever be back to normal.

    I’m confused if it’s withdrawal from prednisone or side effects of Humira? Its a scary position. OTC pain killers do absolutely nothing for this pain. No one seems to take it seriously, even my doctors! When you have Crohns, prednisone can be a life saver, but it is also the drug from hell. Anyone else been on prednisone for a similar amount of time and experience these withdrawal symptoms? If so, how long did they last? I just want to feel better :(

    • jennifer August 15, 2015, 3:58 am

      I too had severe aches and pains from withdrawal from prednisone. It passed about 4 weeks after stopping it. The anxiety was better after getting off 2.5mg. Had to be put on it again for my surgery. Tried to beg her not to put me on it, but she did and I am having the same side effects. I hate it!

  • John March 5, 2015, 2:40 pm

    Interesting article, I am currently in the process of tapering of pred and have found it very tough going. Made a couple of errors in the tapering and dropped too fast a couple of times and now I feel awful. I have brain fog all the time, have difficult concentrating and talking to people and I just feel lifeless and depressed. I am currently stuck on 5mg and I feel there is a long road ahead of me to get off them and go back to feeling normal and enjoying life again.

  • Brian M. March 7, 2015, 5:24 pm

    I was on prednisone for a treatment for my Kidneys. I was prescribed 60mg a day for 3 months then tapered down over the next 3 months. I have been off this drug since Dec 17, 2014. On the drug I had so many side effects from extreme swelling, fatigue, insomnia, and the list go on and on. Now off the drug I have extreme joint pain. I hurt all day and struggle to do everyday functions.

    I was physically fit when starting this drug and now feel like I am 90 years old. (I am 46 by the way). Would love to hear what people do to deal with the pain. OTC drugs just don’t work and my quality of life is terrible at this point. I just want to be able to do normal things again like taking walks with my kids and exercising. I hope we all recover soon from this Devil drug.

  • Arul March 9, 2015, 3:28 pm

    I was given prednisone for treating inflammation in the lungs from Tuberculosis. I was put on 16 mg for the first two weeks 8 for the next and finally 4 for the last two. I have to say the TB nor its treatment was as direct and harsh as the withdrawal symptoms I’am experiencing now. The dizziness and Sleep deprivation have subsided. The nausea and upset stomach symptoms are still really bugging me. I’am 24 years old and just now taken up a new job. The symptoms though not as painful as I think are REALLY a huge factor that makes you absolutely useless to function normally in your life.

    The anxiety and fatigue does not let you to think any other thing other than “will I be normal ever again”. But I feel that as it is evident from the above comments and million more on the internet, One must be patient to allow his body to adjust back to its normal self, which after reading through a lot of people appears to be at least 5 -6 weeks for a minimum dose and course. I believe we all can make it back to our normalcy, just have to be patient and brave.

  • Steve L March 15, 2015, 8:59 pm

    Currently on 60mg per day for the past 9 months for Myasthenia Gravis. Got all the symptoms of prednisone poisoning – plus to frighten blog readers further, they caused cataracts in both my eyes and I have had double laser keratotomy in the past 6-weeks. It is hell! Currently withdrawing by 10mg per month and I am feeling tired, depressed and stupid due to the memory loss.

    • Bill Flack July 19, 2016, 1:37 am

      I am also a myasthenia Gravis patient. I certainly understand. I was diagnosed about 1.5 years ago in a total crisis. Couldn’t swallow, couldn’t breath, etc. 3 IVIG treatments 60mg prednisone and lots of mestinon brought me out of it. I started to taper off the prednisone about a year ago, replacing it with cell cept. Today, the myasthenia seems to be under control with the cell-cept.

      I have been totally off prednisone for almost 3 weeks. Not fun! Body aches, fatigue and yes memory loss. I saw my eye doctor last week and he told me that I have a cataract in each eye, probably prednisone related. I am functioning but it’s difficult. I’m hoping this withdrawal doesn’t last forever. We’ve been through enough with the MG. Hang in there!

  • Mark March 16, 2015, 5:43 pm

    I was prescribed 40 mg for 2 weeks. After 6 days I didn’t think I would live to see the end of 2 weeks. I looked online and saw that potassium deficiency is caused by Prednisone, and many of my symptoms matched with potassium deficiency. So I started taking potassium and eating things that had potassium. It is the only thing that helped me survive to the end of week 2. After 2 weeks my doctor. told me to just stop taking it, no taper. It’s been 5 days now and I feel like I have the flu. My body aches and I feel like I’m in a stupor. I can’t wait for this to end. I feel badly for those who have had worse reactions. This stuff is poison.

  • Lynn March 21, 2015, 12:11 pm

    Thank you for your posts as they have brought me to tears. I was on prednisone for 14 months for Giant Cell Arteritis starting with 60 mg day and then tapered off slowly. I already had arthritis but since stopping the prednisone 7 weeks ago I ache all over–I hate to complain but it is day and night. I am relieved to hear it is probably the prednisone withdrawal and will go away.

  • Victor March 22, 2015, 10:12 am

    I’ve been on Prednisone for the last 7+ years – at doses ranging from a low of 10mg/day to 20mg twice a day for severe Rheumatoid Arthritis.. After my most recent hospitalization, the RA team of doctors wants me OFF prednisone. So – I went from 20mg 2x daily to 10mg 1x daily. After 5 days, they reduced me to 5mg daily or 4 days, then zero! To say it’s been HELL is an understatement: Pain lower back, shoulders, wrists/hands, sore muscles (calf muscles mostly) and feel very weak.

    I’m jittery, dizzy, can’t focus my eyes, am exhausted after only 1/2 hour of being on my feet. So I sit down, and fall asleep for an hour or sometimes more. I think my taper-off was too abrupt/steep. SO – I modified it myself to 2.5mg 2x daily, then I’ll drop to 1x daily, and finlly 1x every other day. As SOON as I took that first 2.5, my withdrawal symptoms dramatically decreased. The slower – long term taper is working for me.

  • Barb April 6, 2015, 11:20 pm

    I was on prednisone for 20 months for Subacute Cutaneous Lupus. I had been up to 60 mg. then weaned to 25 then flared and so back up to 60. After a really slow weaning process (cutting back 1/2 tablet per month in 2 week intervals I am now off and have been for 17 weeks. At 1 tablet alternating with 1/2 tablet I began the joint and muscle pain then the fatigue and nausea. I have been here in the same state since then. My life has had to change substantially. I will see my internist in a few weeks and then he retires. If he tells me it will take “X” number of weeks, or months more then I will grin and bear it, if not I will feel totally abandoned!

  • THERESA April 8, 2015, 8:35 pm

    I’m so glad I am not alone. I’ve been on Prednisone for 7 moths for Sarcoid, and when I reported my symptoms to my specialist, he literally told me, they were not caused by tapering off the drug. He told me to contact my PCP and that I most likely had the flu. I started at 40MG and am now down to down to ten MGS every other day. With every cut I’ve had sweating, chills, severe headache, fatigue, vomiting, diarrhea, and joint pain. Guess I’ve had the flu all along huh? Beyond frustrated.

  • Willy April 11, 2015, 2:01 am

    Predisone has been an awful experience for me. Initially I was manic/anxious and unable to sleep for a huge period time. After a two week taper and end of the dosage I have been in a near state of constant panic. My doctor has prescribed Xanax for the next several days but it only slightly masks the anxiety. I have gone from sleeping four hours a night (interrupted) to over 12 hours and still waking up exhausted.

  • Sandy April 12, 2015, 1:40 am

    I was on prednisone for 2 weeks due to severe asthma. I have been off of it now for 1 week & have had horrible side effects. Thrush in my mouth so bad I could hardly swallow, face, feet & stomach swollen, dizzy, headaches, breathing problems, heart palpitations, shaking, panic feeling, even vision problems. This drug is poison! I’m wondering if I will ever feel normal again.

    • Gerardo October 30, 2016, 2:20 am

      Currently going through the same thing. How did it work out?

  • Ann April 17, 2015, 2:42 am

    I have been on 80 mg of Prednisone for 14 months to keep me loosing my eyesight in one eye. I had lost the eyesight on my other eye a month before it started in my good eye. Four months ago I started taper ring off the prednisone. I have been off of it for two weeks. It saved the eyesight in one eye and I’m so thankful. The last two weeks have been excruciating pain all over my body. My arms are to weak and painful to push myself up and legs to weak and painful to stand up. I can’t do anything but sleep so I won’t feel the pain as often. No prescribed pain meds help. There some other withdrawal symptoms, but not as bad as the pain. Is there any hope of getting better? If so, how long should I expect? I pray our Father God in Heaven will heal everyone through His only Son Jesus Christ.

  • Mick April 20, 2015, 10:10 am

    I was diagnosed with PMR about 9 years ago and was put on a high dose of Prednisolone by a consultant who said that it would last about 18 months but I should take Prednisolone ona reducing monthly basis. Every time I got down to around 6 mg per day, the PMR symptoms returned and I upped my dose – no reference to the consultant who never recalled me – through my GP. This went on for years until my GP finally referred me back to a rheumatologist 2 years ago.

    He wanted to put me on methotrexate but recognized that I needed to get off the prednisolone gradually. Not wanting to rattle I persuaded him to all me to do this before taking Methotrexate. Got down to around 3 mg a day when I completely seized up and couldn’t get out of bed. Result was him whacking me back up to 10 mg a day, to reduce to zero over 10 months and start 20mg methotrexate per week. My final 1 mg dose of Pred was at the end of last January.

    Since then I have progressively got worse during this 3 months. I ache all over, particularly knee, hands and shoulder joints, and my thigh and upper arm muscles. I don’t see this improving without a return to Prednisolone or something similar. I think after such a long time on this drug my system has just stopped producing the right chemicals.

  • Dante Warren April 26, 2015, 7:52 am

    I’ve been on it for 5 yrs after I stopped using it I had bad mood swings, depression, couldn’t focus, shakes, clouded brain, forgetfulness, 5 years later still dealing with it. God keeps me sane. I wish I would have refused it.

  • Kristen April 30, 2015, 2:06 pm

    Wow, no wonder I feel like I was run over by a truck. I knew prednisone was the problem, so after researching everything, I find it is true! Because I had a constant headache, neck pain for ten days, I was taking 12 to 15 Tylenol a day, NOT Good for the liver, but I couldn’t get rid of the headache, not even for 1 minute. I couldn’t sleep, I had to sit in a chair because my head hurt too bad to lie down. And how did my head ache start?

    After spending 6 hours at JC Penny’s beauty saloon (beauty is a stretch) getting my hair bleached! The girl bleached it not once but 3 times, kept me in that sink with my neck hanging over the lip. After hours of this, it pinched a nerve in my neck. Then the headache began. Finally ten days later, I had to call a Neurologist. She put me on prednisone 30 mg a day for 5 days, 20 a day for 3 days, 10 a day 2 days, then 1/2 pill for 2 days. For the first week it worked, my headache was gone, and I felt great, but then…

    OMG, on the night I cut back to 10mg I was in severe pain during the night, my knees hurt beyond belief, and I couldn’t move my legs? I had to reach down and physically move my legs. I literally, was half paralyzed. By the next morning, my shoulders hurt, to the point of having a hard time putting my top on over my head. I couldn’t even brush my hair. I hurt in every part of my body. I have a cane in my house, so I got that to support me. I felt achy in my muscles, so finally I got in the shower, turned the water on to scalding hot, and stood in there for about 20 minutes.

    I could finally move, then I started my research on prednisone and I found an article that drinking orange juice helps. I started a regiment of orange juice. Yes, for a while it does help. This is now the fourth day off the prednisone, and still I am dizzy, I can barely raise my arms, and getting in and out of bed is truly a challenge. Everything hurts, including when I walk, (with a cane) even my – okay, I will just put it out there – even my vagina hurts when I walk! (You may laugh, but really this is a problem!).

    I have a headache, I am sick to my stomach, to the point of vomiting, my blood sugar is low, and my vision is not right. This is so not right! I want to be better. I groan when I go to bed, I groan when I get up, I wince when I try to walk, and I have no energy. My back aches, constantly and since my last pill, I have to take naps all the time, I am just exhausted and haven’t done anything. Everyday, I want to feel better, but so far the pain is hanging on.

    I now understand the steroids took over my body’s job of creating hormones, and until my adrenaline glands figure out that they need to work, I will have to deal with the pain, and take Tylenol again. (I can’t take Alieve or Motrien). The only thing positive I see in all this is, I might lose some weight. So for now, I will continue with the hot showers, Tylenol and orange juice. Good luck to everyone who has had to take this drug. I hope you are lucky and will remain pain free when you taper off it.

  • PRD May 2, 2015, 7:16 pm

    I was on Prednisone for almost 18 months at 50+mg a day for a severe burn. I suffered every side effect known plus a couple of extra for good measure. It was hell trying to get off. Some of the side effects still bother me now, 15 years later. In the end, it took soaking in salt water and lathering in vaseline to help me heal and get off the drug.

    • Joan May 13, 2015, 7:01 pm

      PRD….just curious what side effects are you still having 15 years later! I was put on Prednisone 80mg the end of January to deal with my kidney disease. I was functioning for about two weeks and woke up one morning and felt like a different person who I did not even recognize. Have had depression and anxiety ever since. My kidney has got me down to 20mg now and starting 15mg tomorrow so I guess we will see how that goes. Hope you feel better soon!

  • Jan May 8, 2015, 5:11 pm

    I’ve been on prednisone since 2002, when I became allergic to the mestinon used to treat my myasthenia gravis. At one time I was able to quit (briefly) but had a rebound reaction of coming up allergic to almost everything I put in my mouth. My doctor put me back on 2 mg. a day, which I have been on for about five years. I just decided, with my doctor’s agreement, to get off of the stuff.

    One day of 1 mg caused depression that I couldn’t understand, as my life is great. Thanks for all the comments, as I will now take seriously my doctor’s recommendation to reduce over months rather than weeks. This drug has its uses, but is used far too frequently for mild problems that could be dealt with by other means. Poison ivy?? I’ve had that, and unless very severe, time eventually takes care of it. The prednisone is worse!

    • Bill Flack July 19, 2016, 1:42 am

      I’m also a myasthenia patient. I know prednisone saved my life when I was first hospitalized in a full blown MG crisis. I’ve tapered down from 60mg daily for about one year, finally off completely 3 weeks ago. Sometimes I feel like I want to jump out of my skin.

      I have some good day and some days, I can hardly function. I do function but it’s not easy. Some days I just sit around and do nothing but sleep. I do not get depressed or too anxious. Just shaky, achy, and tired. Hardest part is the mental fogginess. I hate it.

  • Joyce Schneider May 12, 2015, 2:39 am

    I have read every one of your posts, and my heart breaks for the struggles you have had to endure. My experience was a bit different; I brought my misery upon myself. Cutting roots, with no leaves, left me with poison ivy/oak internally. Was put on 10 days diminishing dose of prednisone…finished meds, went to ER, thought I was croaking, got 4 more days, 40mg, no taper. Finished now, and not having terrible withdrawal…

    I attribute it to the fact I have taken Thorne Adrenal Cortex during this whole ordeal, and feel that it has helped tremendously. I was introduced to this supplement through the website “Stop the Thyroid Madness”. (Have hypothyroidism for 30 years and use natural thyroid meds). Please investigate this adrenal support supplement; it has helped me tremendously. Good luck to all.

  • Shyanne May 12, 2015, 6:49 pm

    I have been on a low does of prednisone for about 7 years now 5mg- 2.5. I am now down to 2mg and plan to taper extremely slow. I am now feeling anxiety at night and in the morning. I will stay on 2mg until June and then try and shoot for 1mg. My stomach is also bothering me along with nausea a lot I have been trying to combat this with ginger water.

    I sure hope it works this time and my kidneys and brain function normal. This has been the best drug for RA but the worst for my body. I will post when I am fully off this pill and let you know what other side effects have happened. Thanks for listening. I am glad I am not alone. :)

  • Jodi May 16, 2015, 10:23 pm

    I have been on prednisone since 2008 due to Rheumatoid Arthritis. I tapered for almost a year from a high of 60 mg a day. Took the last dose of 1 mg about 3 weeks ago. It seems as though with each passing day I feel worse, severe knee pain, terrible shoulder and neck pain, nausea, headache, muscle spasms, hip pain. I can’t seem to get either my RA or Primary doctor to listen to me, they both assume that everything is either due to the RA or depression, maybe I need new doctors.

    I am just about at the point that I’m going to go to an acute care clinic and talk to an internal med doc or emergency room doctor. I’m supposed to start on a new biologic on Tuesday due to Remicade seemingly not working but that could be due to the prednisone withdrawal that was recommended by my RA doctor. I feel really horrible and sick. Is there any help or suggestions. It is so frustrating that neither doctor is listening.

  • Rita May 19, 2015, 1:21 am

    I have written before. A rheumatologist gave me more specific type of withdrawal taper. When down to 10 mg, try 9 mg for four weeks, then 8 mg for 4 weeks, etc. So far it is working unless I forget to take the Prednisone or take it later in the day than usual. Unfortunately I have developed sores in my mouth and dentist has me on 0.5 mg. Dexamethasone (which seems like a cousin to Prednisone) mouth rinse oral solution, but am not to swallow it. Pharmacist advised that should not affect the prednisone withdrawal. My hopes are up.

  • Grace May 19, 2015, 3:55 am

    Thank you for this. I thought I was going crazy with withdrawing. Been on it for over 5 months and well and beyond over it now. Everytime I drop dose I get so unwell. Sometimes have to stay in bed or at home away from people. I find everything or nothing makes me super emotional all the time.

  • Sylvia May 20, 2015, 2:17 am

    I’ve been on and off prednisone for 10 years. Everytime I get on it I start trying to taper immediately. Right now I’ve got agonizing pain, that old muscle/stabbing pain and fatigue thing going on. Just miserable. I am now on 2.5 mg and have been dropping .75 mg. each week. I’m wondering if anyone has actually come off this stuff and done well? Most here seem to have horrible lingering effects. Does it go away? How long does it take?

  • Kristen R May 21, 2015, 1:46 pm

    This is an update of how prednisone has affected my life. I previously did a post that says quote “OMGI feel like I’ve been hit by a truck” and that was after only 4 days off prednisone. I have now been off prednisone for 5 weeks and yet my side effects continue. I am so fatigued I still can hardly move my arms I barely walk with a cane. Mostly I have been relegated to a motorized scooter. I take vitamin C, vitamin D 800 units, potassium, and calcium 1500 milligrams.

    I drink lots of orange juice eat lots of bananas. Yet each time I try to eat I get nauseated. my vision seems to have bright diamond shaped lights in everything that I look at. I can no longer sleep in the bed at all because I no longer have the strength to turn over. My skeleton hurts, my knees kill me and my legs feel like they’re paralyzed…like heavy dead sticks. I sleep in a chair in the living room that has a motorized lift to lift my legs because I can’t lift them by myself.

    My husband does the cooking and he still work. In the morning he leaves my vitamin and a bottle of water And gives me a banana. I do a lot of crying and I feel very very suicidal. This is no life for someone who was so active I haven’t left the house in a month and a half and I Live my life in this chair. Do not let your doctors put you on prednisone for anything you might as well be dead, because as soon as you come off of this drug you will feel like you’re going to die anyway.

    The only thing that they can do for you is “nothing”! You take your over the counter Tylenol, you take vitamins, you drink orange juice, you eat bananas and hopefully your body will finally recognize that it has to make its own cortisol with those little adrenaline glands that sit on your liver. Maybe you will start feeling like a human being in a year so I hear… My God I hope it doesn’t take that long!!!

    Here’s hoping you will never ever have to be put on prednisone because if you end up with withdrawal symptoms your doctor will deny and say, “Oh there’s no such thing.” You feel like you’ve been run over by the bus they just threw you under! So if this whole thing is scary to you, it should be. Prednisone is your worst nightmare!

    • Chris May 30, 2015, 11:33 pm

      Kristen. Have you tested your cortisol? Hyper cortisol levels like mine gave me similar symptoms. For me the anxiety was the worse. I found out my Adrenals are working but over producing cortisol. Also try to look into alternative reasons for your symptoms. Lyme disease for example. We’re you exposed? I’m not a doctor and this is not meant as medical advise. I was put on prendisone for an ear infection that did not heal and all heck broke loose. I had the body aches, insomnia muscle weakness anxiety. Still do 3 months later but some of the anxiety stuff is improving on antibiotics.

      I had an endocrinologist work up and discovered my cortisol was high not low and my diurnal pattern is still working just stuck in a fight or flight mode for most of the day. I hope this resolves in time. I’m taking a natural adaptogen under my doctors supervision. If the moderator permits I can share the name of the drug. The one I’m taking is to reduce cortisol not raise it though. As far as the underline cause im in the process of looking in to a LD diagnosis. The treatments are very different . I hope you feel better.

  • David May 23, 2015, 6:04 am

    I have been on the prednisone/corticosteriod cycle for 50 years. I fear that I am permanently damaged and the doctors just keep wanting to give me more. It is the most excruciating pain I have ever had. I simply want to jump out of my skin.

  • Chris May 30, 2015, 11:05 pm

    Been 3 months since taking two doses of 60 and 50 mg of prendisone. Had to quit cold turkey. Still having symptoms of being sick, dizzy weakness, weight loss. I can only go to work and back to bed. It appears to have caused me severe anxiety and messed up my HPA axis my 24 hr cortisol level was really high. I had a Negative Brain MRI and adrenal CT however. Not sure when this is going to end.

    On a side note my doctor is looking into Lyme Disease as an alternative reason. Don’t recall a tick bite but did go camping in Northern California and horse back riding in the woods in Southern California a few months before my symptoms. A drug like Prendisone can allow a bacteria like a lyme to run amuck. The steroid does not explain my root symptoms, but I’m sure it didn’t help it.

    • Lynn October 11, 2015, 6:42 pm

      Do you have any updates on your condition?

  • Craig June 10, 2015, 2:13 pm

    Has really helped reading some posts but feel my symptoms are different to most and worry this is just me and I will feel this way forever. I was prescribed Pred. at 40mg originally for 10 days and then began taper at halving my dosage a week until final week at 2.5mg. I was prescribed for severe uveitis in my right eye. I am a 31 year old male and have no history of mental health problems and I am considered a pretty happy guy by all that I know.

    However, after 8-9 days on this drug I suddenly started to feel really depressed, scared, and detached from the world. I went to doctor who prescribed me diazepam which helped me sleep and nothing much more. Stopped taking Pred on the 17th of may and still have really depressing outlook on life now, occasionally feel anxious and I am waking up very early each morning. Are these normal, or explainable by the Pred medication?

    Any idea when and if I will ever be myself again? Would love to hear from someone who has an idea as every site I check is different regarding timescales and symptoms. Especially concerned as most appear to suffer really badly from physical issues and I had minor acne and thats all!!!! All my effects were mental. Any advice would be great. Thanks guys.

    • Roxanne June 11, 2015, 12:38 pm

      Well, Craig, I think you have explained it very well—the bulk of your symptoms are mental/emotional/mood changes. This is not unusual, just this is how it affects you. Knowing it is the drug withdrawal should help you to hold the course until you return to your normal self. Yes, you will recover, but it will take some time.

      The responses & recovery from prednisone use are all highly individual, so don’t feel your situation is abnormal in any way – there are no hard & fast “rules” of normal here. I’m sure that mental health changes are very hard to cope with and somewhat frightening. Just continually remind yourself that this is not typical mental illness & that it will pass in time.

      Keep in touch with friends & have a support system throughout your tapering who know what you are going through and help you to stay focused. Remember that the people who are tapering & experiencing ill physical health are also experiencing some level of depression because it is simply depressing to have your life put on hold because you are not yourself.

      I stopped prednisone after a six month taper on March 7, 2015 & I am only now, three months plus out, beginning to have the odd morning when I wake up with only mild levels of pain. But I am convinced that as time goes on, there will be more good days than bad. My endocrinologist told me that my face and abdomen will continue to change after stopping through a six month period, going back to normal.

      So I am confident that one day I will return to a version of myself that I recognize. I believe that you will too. Best wishes for a full recovery soon!

    • Joan June 11, 2015, 10:25 pm

      Craig…I have been on prednisone since the end of January starting at 80mg now today I am at 2.5mg. Have been tapering form 30mg since the end of April. Most of my side effects were mental too along with getting type 11 diabetes which I did not have before the prednisone. I experienced HORRIBLE mental side effects and I also could not walk a month after I started taking the prednisone.

      Was in the hospital on three different floors during the whole month of March and spent the first two weeks of April in a rehab trying to regain my walking. Well I have been home 2 months today and happy to say I am walking and going up steps….by the grace of God! Also now that I am at 2.5 I am starting to feel somewhat like the old me. I’d say about 60%. Still a little depressed and some anxiety but not like a few weeks ago.

      Now tomorrow I am supposed to stop my prednisone so I guess I will see how that goes. Hopefully not too many withdrawal effects. I had a couple of people respond to me when I felt like you and they said to just hang in there and eventually you will feel “normal” again and now I am personally finally seeing that in myself. So hang in there you will be OK. -Joan

      • Craig June 15, 2015, 9:47 am

        Hi guys. Thanks so much for your feedback. When I hear about you having diabetes or not being able to walk, etc. – makes me feel like I should just shut up and get on with my symptoms as I have clearly got off lightly with mine. Still having depressed thoughts about my life, future and don’t seem to enjoy the little things I loved before like: music, sport and rubbish TV. If I let the thoughts in fully I break into mild panic attacks so just fighting with them just now and hopefully will eventually blank them out completely.

        That’s me starting week five today and just stopped taking diazepam to try get drug free. Hope that helps me think straight as apparently its not great for depression. Finally, Roxanne and Joan – I don’t know either of you but just want to reach out and say you are lovely people. Wish we were all Pred-free but we will be again one day and what doesn’t kill us makes us stronger! All my love to you both and anyone reading this page for support. People will never know the horrors of this drug and lets hope we never have to again. Will keep you updated on my withdrawal, hope you’ll do the same. Thanks again for your support.

        • Joan June 29, 2015, 2:35 pm

          Craig….you will be OK!  I know what you mean about TV I felt the same way so for the last couple months I’ve been watching the Disney Channel… reminds me of my daughter who always makes me feel better. I have just recently listening to music again after months of not listening.  Try not to fight the thoughts that only makes more anxiety.  Trust me I was where you are now just a couple weeks ago and today I still feel a little depressed but much better and I see my personality coming back and my friends do too!  Just hang in there, you’ll get there!  Have faith!  

          • Craig July 16, 2015, 8:31 pm

            Hi Joan, thanks for your chat. I am so so happy to say, I am starting to see my symptoms lift after about 7+ weeks. Still feel like the depressed thoughts are trying to come into my head but I am totally able to fight them off and even become completely distracted from them when I keep myself busy. Strangely the evenings are when I am at my best.

            I just want anyone reading through these posts who is suffering from my symptoms to believe what people on here are saying. It is so hard when your own head is messed up by these drugs. You think its just you, you think all sorts of weird things and you start to convince yourself that a] you’ve always been like this and b] you will never get better. I m telling you all, I am living proof that isnt the case. I had zero physical impacts from Pred. but after 10 days of my treatment at 40mg a day I was in such a dark place.

            Had to leave my flat and go back and live with my mum. Everyday was a total battle with the most horrifying depression you could imagine. This continued through my tapering and for 6-7 weeks after my last dose. But I am getting over it now and I’m sure I will still have bad days to come as the experience has changed my mindset for so long but the good old Craig is fighting back and all my friends and family have commented on the change in recent weeks.

            Just wanted to give some positive chat on here as so many people write when they are terrible and then never re-post when they are getting better and leaves those struggling with little or no hope of recovery, especially with issues of the mind. This site really did save me from madness at times and to all of you, brave enough to share your experiences, I thank you from the bottom of my heart. God bless.

  • Janet Larson June 15, 2015, 4:44 pm

    I thought I would check the internet today before I called my rhematologist. I have been withdrawing from 5mg for a little over 2 weeks; one mg less every two weeks. I am 79 years old and have been feeling that the end for me is near. That’s how bad I have been feeling. I take lots of supplements. Perhaps that is helping. But I still have extreme fatigue, extreme weakness, worse aches and pains. My legs are particularly bothersome. I do have a very bad back.

    I thought prednisone was a wonder drug. I felt so alive on 20mg when being treated for acute bronchitis. So we decided to try treating my arthritis and bad back with 5mg. Did feel considerably better. But my stomach got huge. I have metabolic syndrome tummy anyway. Couldn’t stand the weight gain and huge tummy, So we’re tapering off. Feel rotten. Thought something was terribly wrong, until I read your blogs. Don’t know what steps I will take now. Can’t stand to think of weeks/months of feeling like this. Oh, my emotions have been on overdrive, too.

  • Melissa June 16, 2015, 4:09 am

    Hi, I’m 17 and was on prednisone for my severe asthma and anxiety attacks. It did help, but I was also taking cough syrup, and my inhaler with the aero chamber for a good two weeks. I felt pain everywhere and my throat would tighten the more I would fuss, and my asthma was triggered by my allergies. Well, long story short I was prescribed prednisone and I took 5mg three times a day, with a me and felt fine, but did gain weight.

    The fourth week my mother told me to stop taking it, which led to the “cold turkey” path, and I did not like it one bit. One day I just didn’t take it, I had left with my friends on a bus to a concert, and it took 40 minutes until I started feeling numb in my hands going all the way through to my chest and I kept shaking and felt my breathing pattern race, and had to get off. I was stuck in Koreatown getting food, still feeling faint, threw up and had diarrhea, got picked up, I couldn’t sit in a car without feeling numb.

    It wasn’t until I got home that it was the side effect to prednisone. I still get these symptoms til this day and have to literally yawn to get a good breath, because I struggle to breathe. It did more damage than help, and I don’t even have medical insurance at the moment. If someone has any direct instructions on how I can get it out of my system PLEASE please help me.

  • Reggie June 19, 2015, 1:12 am

    I was on 1000 mg of Prednisone for 7 days, then 60 mg for 10 weeks, then fast taper, then off completely for 9 months. I can completely relate to a lot of the comments posted about the lingering effects. I felt horrible when I was on Prednisone, and was looking forward to getting off of it – I had no idea what that it would be a living hell.

    Since I’ve been off of Prednisone for 9 months now, the withdrawal symptoms are still severe, but finally starting to improve. I have read a lot about Prednisone withdrawal and some medical journals say 4 years… I hope that they are just being overly conservative. I can’t believe that I wasn’t warned more before the neurologist put me on Prednisone – as it turns now I never even needed to be on Prednisone in the first place…

  • Tina mamphey June 21, 2015, 3:14 am

    I have read through all of these post and I feel much better knowing that what I’m experiencing is normal. I have been on prednisone for 8 years and I have it tapered all the way down to 2.5mg a day. Like most of you I hurt from the top of my head to the bottom of my feet. What I need to know or hear from someone is that all the pain eventually goes away. Am I going through all of this withdrawal pain for nothing? Can someone who has gotten back to normal please reply.

  • Jil June 22, 2015, 3:56 am

    I was on 50mg of prednisone for 5 days followed by a 10mg taper every 5 days. After 3 days at 50mg, and absolutely no sleep and nonstop anxiety I took myself off it. I didnt realize that they taper for a reason. But I figured it was only three days I should be fine. Couple days after cold turkey I was hit with extreme exhaustion, aches and pains, and numbness and tingling in the extremities. Now I can barely walk because my legs are numb and like dead weight.

    I can’t feel them and they don’t seem to cooperate with my brain. Is this related to cold turkey stopping the prednisone or is this some thing new and unrelated? Should I go back onto the prednisone and continue the taper? I didn’t think it’d be a problem after three days. Am I wrong?

  • Kristen R June 24, 2015, 6:57 pm

    This is Kristen R. I have left 2 message on my progress. The first I was off the pill for 4 days and I felt like I was hit by a truck. I did an update after 5 weeks. The symptoms had not lessened in fact they were more intense now here it is 9 weeks since I came off the drug I still have issues with my muscle I cannot lift my arms above my head. I try to comb my hair by bending over the sink. But very painful using my arms. Because of this my hair hasn’t been washed in two months because I can’t do it.

    I still cannot sleep in the bed because again my muscles will not allow me to turn over. If I try to reach for something my arms feel like they just broke right out of their socket. The pain is intense. I just want to cry. it takes a couple of minutes for the pain in my arms to diminish. My legs are wobbly when I try to stand. I can still only walk maybe five or six steps using a cane. I still sleep in the chair in the living room however I have found that I can sleep on the couch.

    Although when I say sleep I mean 10 minute cat naps… my bones will no longer let me stay there without pain. I have to use the bathroom 5 to 6 times a night. Which is totally painful to try to get on my motorized scooter to the bathroom and then move 5 steps to the toilet. I keep thinking everyday I will be better but yesterday I was so sick and nauseated I spent the entire day trying to lay down because I was so dizzy sick very sick I’ve lost 40 pounds in this nine weeks. When I I can only eat two to three bites.

    Yesterday I had 6 tiny baby mini crackers with 1 teaspoon of cheese and and two jellos. I have developed hypertension stage 2 and my blood pressure medicine has been increased. I have kidney pain and another pain under my left rib cage. I still take all the vitamins and the Tylenol and now I have developed these huge blood vessels at my temples along with a headache and my eyes feel like they are bulging out. If the internet is to be trusted it says if you have protruding temple veins you may have arterial arthritis. And the cure for that is prednisone!!

    No way will I ever do prednisone again ever. For anything. So after 9 weeks let’s be clear my hair hasn’t been washed. I can take a shower but I can’t lift my arms. I haven’t worn shoes in over 2 months. I cannot leave the house I have just been here inside, homebound. I can’t cook. I can barely make it to the bathroom. My clothes are a pair of shorts and a tank top. I do try to comb my hair but it tangles easily. Yesterday when I tried there was a big knot of tangles in the back of my hair.

    I reached in the drawer took out the scissors and cut my hair. I no longer care what I look like. I have had no makeup on over 2 months. I have reached the point where pain has taken over so I don’t care what I look like. I want this to end..I too look for answers like everyone else but I see no one that has actually given a date when their symptoms stop. this is awful. I beg for a good night sleep without pain but so far not happening. At night, I sit alone in the dark. Doing nothing, just just sitting there.

    I will say this one thing that is positive. I no longer feel like I’ve been hit by a truck my body hurts but not like it did when I first came off of prednisone the worst of all for now is my arms…the muscle in my arms when I try to reach and the bones that hurt when I lie down and of course the nausea. So a baby step forward. So for what it’s worth the side effects are not pretty. My side effects after 9 weeks have exhausted me. It has been a long time I just wish there was some relief in sight. I wish you all the very best. God speed.

  • Bette June 25, 2015, 12:17 am

    One year ago December (2014) I developed Polymositis/Rheumatica. Went through hell, saw one Rheumatologist and he put me on 15mg of Prednisone and I was to taper to 10mg in a week and 5mg the next week and see my Dr. I was in such agony with pain that I went to another Rheumatologist and he said I should be on 20mg and taper off within the year. March of this year I finished with the steroid and since then I have terrible joint and muscle pain and have to take Aleve (Naproxen). It helps some, so at least I can do some exercise and gardening. If I don’t take it, I just lie around all day and hurt. Hoping this won’t take too much longer for my adrenal glands to kick back in and I get some energy and the pain leaves my body. This is so tough on family as well.

  • Joan June 25, 2015, 11:19 pm

    I finished my prednisone taper on June 13th after taking it since the end of January for a kidney auto-immune disease. When will this darn lingering depression go away? I am not experiencing too many physical side effects except my legs still feel a little weak. One day I am somewhat OK and the next day I’m crying all day like today. I just want to be HAPPY again and feel like a normal person. Before this whole ordeal with the prednisone I was a very HAPPY and POSITIVE person.

  • mary griffin June 26, 2015, 11:36 am

    Three weeks ago I was bit by a spider. The Dr gave me a steroids shot – put me on antibiotics and prednisone 20 mg. Finally started tapering off. Now I am dizzy; weak feel like I am sunburned on the inside – my mouth and lips are blistered. So tired and can hardly walk to bathroom. Also having problems breathing well. My Dr took took me to stop meds yesterday. I hope this stops soon. I don’t even if I should start my pro-vent inhaled in the am.

  • Debbie July 1, 2015, 12:37 am

    I was on a 12 day Predinsone pack that tapers off after 4 days. I didn’t feel any effect of the drug until I took the last pill. After that I experienced worse issues then I have had collectively my whole life. I ended up in the ER with what I thought was a heart attack only to find out that it wasn’t that at all. I was sent home that night still feeling really bad. Chest pains, pain in my jaw and down both arms. The next day I let like I had 10 lb weights tied to my arms and legs and I just couldn’t motivate. I had extreme headache for 3 solid days. I have been off the drug for at least 2.5 weeks now but still experience bouts of fatigue and anxiety.

    Today was one of those days. I also have sores in my mouth and lips that come and go. My gums are red and irritated. this is probably the most aggravating symptom of all. I cannot blame these things on anything else. The only common denominator is the prednisone. I suppose that there is a chance that my adrenals are not kicking back in as they should. But who wants to go to the Dr after all this? I think I’ll take a healthier approach and continue with organic veggies fruits and lean chicken meats and fish. I will trust my body to fix it’s self if I give it half a chance. I’m so sorry for all of you guys! I know your pain and I will NEVER take this drug again. God be with you all!

  • brian July 7, 2015, 7:18 pm

    Kristen I hope you are feeling better. Myself I was on and off Prednisone for 2 1/2 years. Up and down from 30m to 2 & 1/2mg. Off for a month if lucky and back on again. All of this for sinus issues. It told me to see my second ENT doctor and two sinus surgeries. I new doctor say we have to get you off the Prednisone for good. I have been off for 64 days.

    Yes I know the exact amount of days. The withdrawal has been Hell. I have anxiety that just comes on and won’t let go also my Blood Pressure goes really high because of it and I get very dizzy. Finally after dealing with it for 45 days I went to my main doctor. Told her all the issues I am having she told me. Prednisone withdraw can last easily 3 to 6 months.

    Mainly because of how it changes all your hormones in your body. It takes that long to go back to normal. So she put me on Zoloft 50mg for the next 3 to 6 months to help me also say unless I am dying I can not allow any doctors to put me on Prednisone until I fully heal. I will say the Zoloft does help I feel a lot more normal most of the time but I do have times still of being freaked out and not knowing how or why I feel that way.

    I really hope you are getting better and I hope this post helps someone. It really is a live saving drug for most but can be a nightmare for others.

  • Mary July 10, 2015, 6:01 pm

    Here is my story, 3 months after stopping Prednisone: I started a new job, which I found to be very stressful. This triggered my stress induced asthma. My doctor gave me a short course of prednisone. 2 days at 60mg, 2 days at 50mg, 2 at 40mg, and so on, with finally ending with 2 days at 10mg. The first day I took this, mid March 2015, I had INTENSE body/joint aches. Just a really, really bad ache deep into my bones.

    Then that went away about the third day. Then started the crazy eating. I had the craziest, uncontrollable cravings, worse than when I was pregnant. And lastly they hyperness that I did not see, but those around me did. Besides the aches, I wouldn’t really consider this problematic. Sadly, while on prednisone I had no asthma whatsoever and it did return as soon as I finished.

    The first days after I finished, I had horrible, horrible headaches, which eventually went away to just mild headaches. I was having wildly vivid dreams where I felt like I wasn’t sleeping. My new job was getting to me and I just kept getting this pain/heavy ache in my chest like if someone was sitting on it. I could never really take a deep breath. I was getting irritated with everyone and felt like not doing anything.

    Finally about 2 weeks after finishing the prednisone, I ended up having a panic/anxiety attack at work, and ever since then I have not been able to shake the anxiety and I believe mild depression. Not to mention joint aches every now and then. The worst for me is anxiety. I would say that before prednisone I had healthy relationship with anxiety. But now, almost 3 months later, it’s an everyday thing. I started acupuncture about a week after my panic attack and I swear it has saved me.

    After my first treatment, I immediately felt a difference in my anxiety. But that was short lived since I was pretty damaged. However, with each session I have been improving. Now for the most part, there are many days where I feel close to normal and I am much better than before. However, being a female, I noticed that the various hormonal stages of my menstrual cycle will affect my anxiety. I’ve cleaned up my diet.

    No more caffeine, way less junk. Started exercising regularly. I’m not sure if these are making a difference. However, any stressful situation will make it worse. I still have bad moments, like today, where I just want to go lay down and cry. After my anxiety attack, I went to my doctor who prescribed the prednisone and he said yes, that my anxiety could be a side effect since I never had a history of anxiety.

    He gave me an anti-depressant (paxil) and I have refused to take it because of the withdrawal effects I’ve read on those. They sound just as bad as Prednisone, so why start the cycle all over? So long story short, 3 months later, still having anxiety, but overall not as bad as when it started. I hope it is not a permanent thing. Writing this makes me question if prednisone was even the cause, but I do have to remind myself that I was completely fine before it.

    I want to thank everyone for sharing their stories and experiences, but I really wish we could get more updates. Even if it is a year later. Even if you are only 10% better or worse. We all need that hope or that reality check. I pray that everyone is doing better.

  • Mary Carol July 10, 2015, 6:40 pm

    I got a spider bite (3) years ago that resulted in a huge welt on my neck and a rash that spread across my neck and up my face–my eyes started to swell shut so I went to the ER and I was given prednisone and corticosteroid creams to put on my eyelids. That started a (3) year nightmare of being on and off of prednisone and using corticosteroid creams. This stuff is poison–no should take it and it is so protected.

    The rash would go away and it would come back when I stopped taking the medication–so the doc would put me on more…and stronger creams. Finally I was sent to University of Maryland Head of Dermatology where they wanted to put me on stronger drugs and I said no. They told me I had chronic eczema and that I would be on drugs for the rest of my life–the doc was so arrogant. They put me on 60 mg prednisone with a slow taper schedule and I worked with a naturopath to try to deal with the systemic damage that had been done in my body.

    Dermatologist only deal with the skin–nothing deeper. I got off of it August 7th of last year–and then my body turned inside out. My whole body turned red and I thought I was on fire. My skin constantly peeled off–where ever I sat there were skin peels all over. If you read about Red Skin Syndrome, you can get a lot more information about this. After of lifetime of never having any issue with allergies, I became sensitive to all sorts of foods/plants–I ended up in the ER (8) times–totally red, skin on fire (but no fever), skin dry and bleeding–then got infections–all they offered was more prednisone.

    I was literally in the middle of a cross county move so I went back on it to just get across the country. The last hospital stay in April they pumped tons of it into me intravenously–they said I was close to organ failure given that my skin had stopped functioning. I was freezing in 85 degree rooms…IT WAS A TOTAL NIGHTMARE! Now I am working with naturopaths again and I pray it will work. I curse the day I went into that ER and I curse the doctors who just kept telling me to take more.

    I had a history of being extremely sensitive to ay kinds of drugs–they don’t care–they just don’t care. I’m down to 15 mg per day and I have been told that from 10 mg on one has to go very, very slowly–even 2.5 mg doses. There used to be a test to see if a person was allergic to this drug but it is no longer available. In a “sickness for profit” medical system, this kind of thing will happen. I know that this drug has helped some people prolong their lives but for me it destroyed mine. I was one of the healthiest people I know–wish me luck.

    My heart goes out to everyone who has shared on this thread and I wish you all healing. You won’t find it in the western medical system which is run by big pharma and insurance companies. Oh, and at the end when I was in the hospital, I had doctors looking at me and just shaking their heads saying they had never seen anything so awful looking and severe–and they didn’t know what to do other than prescribe more prednisone or chemo drugs……you truly are on your own when it gets really bad.

    One dermatologist told me she wanted me to take prednisone, cover my body with corticosteroid creams, wrap myself in a sheet and sit for two weeks. That’s insanity. I went insane–I would sit in a bathtub for 7 hours out of the day, screaming and pounding the walls because it was the only place where I could stay warm and not have my skin dry out. I prayed every night that I would die. I just pray that it is over and, despite this post, I try to stay in a more positive frame. Again, my blessings to all–and to me! My advice: don’t ever touch this drug and walk away from the doc who prescribes it.

    • nia October 6, 2016, 12:21 am

      Hi Mary, Your story is tragic. How are you feeling now? Hope you’re getting better. I was in a similar situation. Due to a mild allergic reaction (unknown cause) I was given Solu medrol injection and oral Prednisone for 4 days. After about a week I flared up and my face swell and I was red, burning and itchy all over my body except legs. I curse the ER I went to.

      Now it’s been a month and seems like my flares are alleviating but looks like I am nowhere close to being normal like before. Do you know how long did it take for your skin to fully recover? I am also having a healthy diet full of Omega fatty acids. I do not have any other symptoms of withdrawal except my skin being a big mess. Hope I am out of it soon. Can’t take this long.

  • Sharon Funkhouser July 10, 2015, 11:10 pm

    The Dr. Thought I had temporal Arterites due to neck and head pain (this is an inflamed artery in the temple.) They immediately put me on 20 mg of prednisone. After 2 vascular surgeons told me they didn’t think I had it..not the typical symptoms. I saw a Rheumatologist then a neurologist and they all agreed. So finally after 4 months of prednisone they tapered me off. Day 6 today of no prednisone, headache did not come back. Now I am dealing with fatigue, weakness, depression and I feel like someone beat me with a stick! Never again will I take this evil drug! It would have been nice if someone told me how bad the withdrawal would be. I’m not happy with my Dr. Right now!

  • Chris Howden July 13, 2015, 7:53 am

    I developed IPF told it was idiopathic also asthma, I am male, 66 years of age. I started on prednisolone 50 Mg a day. It was like magic, I went from extreme shortness of breath to riding a bicycle 35 Km a day and I mean every day. Over 2 years I cycled 13,800 Km I also swam at least a mile every day. I stayed at 50 Mg only a short time and at 6 months was down to 25 Mg a day. I stayed at 20 mg a day for 18 months and then was told that the IPF was stable.

    I slowly tapered the drug off until I was taking 5 Mg every other day, then 2 Mg every other day. I noticed that once under 10 Mg my performance on my bike started to drop back. Within a few weeks of stopping the drug I could no longer ride my bike, I had appalling joint and muscle pain, my legs became week, my hands would swell mostly in the mornings. My feet burnt and I had a sensation of walking on broken glass and I developed what I have been told is psoriasis.

    I also got tendon problems, bursitis in my shoulder. I have been tested and tested for RA and am now on Sulphasalazine as a rheumatologist says I have psoriatic arthritis. I stand in the shower and the hot water makes me feel like I have sunburn, legs and arms. There is no doubt that I am depressed and majorly fatigued. I have got to the stage where I feel that my life is almost over. It’s a year now from the last steroid and I would have difficulty in walking 200 yards. Everything is an effort.

    I live out in country Australia so a visit to a specialist is 1000 Km round trip. My GP seems to have no Idea what’s wrong with me. I keep saying that all this started when I stopped the prednisone, all he asks is “Did I come off slowly” ? Dont know where I go from here.

  • Denis July 17, 2015, 7:07 pm

    I am tapering down from a dose of 25 mg maintained for six weeks. I am currently at 15mg, down 2.5 each week. I took this course having taken a course in 2013 because of issues with nasal polyps. That course produced a complete remission of many years fibromyalgia and chronic fatigue. Such that during the course I worked hard physically with joy and determination to restore condition…but unfortunately damaged tendons in shoulder so spent two periods in 2014 in recovery from shoulder repair operations.

    Now the withdrawal. I know the biggest issues will be from 0.5mg to zero. 0.5 is near normal human production. ONE THING I HAVE NOT READ IN STORIES HERE IS A GOOD WAY TO GET THROUGH 5mg TO ZERO. Best advice from a neuroncologist for my wife way back was not to continue tiny taper smoothly but to do jolts. That is, go without for a day, give support for a day, etc. Follow what works best, keeping within the 5mg. The HPA axis has to relearn cortisol production management over a period. Jump the little doses around.

    Several other things I do. Because prednisone rips mineral out of bone and muscle I take magnesium supplements which best enable getting calcium back where should be. For similar reasons I take lots of gelatin, the best restorer of protein. A half teaspoon or less in stews, scrambled eggs, stir fry etc. enhances taste too. 4000iu a day of vitamin D which we nearly all lack reduces pain too. Its been reassuring to read this article and thread.

    I’m not sorry I’ve taken the prednisone. I’m sorry for those for whom it’s intolerable, despair that doctors too often have no clue about the intolerances. It has done wonders for me. My doctor and I hope benefits of the course may last. We don’t know whether I’m dealing with post concussion inflammation or other inflammatory etc brain issues. But its worked. At now 72 I have to work through issues of very low quality of life prior to prednisone on the one hand and osteoporosis and diabetes threats on prednisone.

    The balance between perhaps fewer days but better days and longer life of crappy days. I suppose it’s easier to figure at my age than at younger age. Manage that end of taper carefully and creatively.

  • Barbra July 18, 2015, 7:19 pm

    I have been on and off prednisone for many years for severe exzema. I developed a huge rash all over my body. It looks like I am sunburned, but feels worst. By reading all your posts, I realize I developed a reaction to Prednisone. My Dr prescribed a high doze (50mg) for two weeks with very little tapering (1/2 doze during the last week). The day I got off it, I started getting a severe rash on my arms, face, neck and chest.

    So my Dr put me back on for 1 month, tapering down to 1 pill a day (5mg). My condition got worst as the days went by. I have palpitations, dizziness, upset stomach, heartburn, depression, joint pain, but the worst part is my skin. I have been off for 5 days now and I don’t see any difference in my skin. My face is swollen and I look like I’m having a severe allergic reaction. I take Benadryl at night to help me sleep. My skin is on fire. I saw my Dr and two dermatologists for this rash and they all said that I had dry skin and needed to moisturize.

    Can you believe it? I was feeling suicidal at that point and they prescribed Methatrexate and Prednisone with lots of moisturizing cream. I read through all your comments and I didn’t notice anyone else with a skin rash. Has anyone else experienced this? I’m glad I found this group. It is helping me make sense of what is going on in my body. I can’t wait to be back to normal. Blessings to you all!

  • Jack Burton July 23, 2015, 12:17 am

    I wanted to check in since very few people check in very far down the line. It’s been almost 7 months since I stopped taking Prednisone. I was on it for 2 weeks with a tapering does starting at 60mg (60 to 40 to 20). To recap, (cause my post is probably a bit lost up there ) the main complaint I have is the very day I started taking it, it made me shaky and my movements jerky.

    I want this post to be a positive as possible, there is a very good chance that all of us will recover. Some will recover faster than others. Mine couldn’t be more slow than it is, but I have recovered some. Prednisone has the potential to affect your adrenals for up to you a year (that’s why medical forms as you if you have been on steroids the past year) and if I remember right, if you’ve been on over 30mg for any length of time than you can take a long time returning to normal. So don’t despair, it takes time.

    It may take a while for some of us. Try and get on top of what’s going on. I really have no clue what Prednisone did to me, and I would like to. Doctors are pretty worthless because they love the stuff so much, so it’s up to us. I’m thinking about getting a cortisol saliva test to see what’s going on there. This can be a long road, folks. But take heart that the body can heal. We just have to figure out what happened and act accordingly.

    • Lynn October 11, 2015, 6:13 pm

      How are you feeling now?

  • Nora July 27, 2015, 9:32 pm

    I was on prednisone for 3 1/2 years for chronic migraines. I was on different doses at different times depending on what my headaches were doing. Finally this year I GRADUALLY tapered off. It took me more than a year to get off this terrible medicine. It did help my headaches in the beginning and gave me great energy.

    Then when I would lower the dose my headaches came back with a vengeance, so up the dose would go. I have now been off prednisone for 5 weeks and feel miserable most of the time. Depression is bad for me and very emotional. I have crying jags all the time. My psychiatric is onboard trying to help. I am achy in every joint and muscle and now wonder if I have arthritis that was being masked by the prednisone.

    I cannot get out of bed in the morning. It takes me great effort to get out of bed before 11 a.m. And I go to bed at 9 p.m. I’ve tried to walk and can walk 4 blocks then have to turn around and walk home. Me feet feel like they are in molasses. It’s awful. I feel like I am going crazy. Please pray for my recovery as I cannot see it. Thank you.

  • Cory S July 31, 2015, 5:31 am

    Reading these posts has been very alarming. I began taking prednisone in October 2014 when I was hospitalized for respiratory failure, ultimately caused by an autoimmune disease called vasculitis. My rheumatologist hit me hard with big doses over 100mg/day to start, and basically save my life. The weaning began immediately. In the meantime, I cried every day.

    I lost significant weight initially due to my hospital stay, but quickly gained it back plus about 25 pounds more than what I was at when I became ill. My weaning was at 5mg/week until I got to 20mg. Then it went to 2.5/week reduction. I’m now at 2.5 every other day for another week, and then off.

    Since I’ve gone to taking it every other day, I’ve noticed extreme fatigue and weakness. I’m actually glad this is a withdrawal symptom, and not a product of other things. It’s a nasty drug, but it saved my life.

  • Elaine McQuade August 6, 2015, 8:42 pm

    I have been on Prednisolone since May for pulmonary fibrosis of the lungs. I started in 40mg reducing 5mg every 2 weeks – at the onset I had the energy of a rocket & my heart was racing at 180 beats per minute – I couldn’t shut an eye & was distressed. When I got down to 20mg 3 weeks ago I am now the complete opposite. I’m weak, fatigued, very short of breath (more so than with my lung condition), no appetite, nausea & very low in mood – I have had suicidal thoughts. My GP is taking a bit of a back seat as I’m under a respiratory consultant for my treatment. I am going to call his secretary tomorrow as I can’t function like this. -Elaine

  • mary August 10, 2015, 10:00 pm

    I took Prednisone for cluster headaches and stopped on day 7 of a 10 day course as I felt I was going crazy. I cried all the time and was sleepy and hallucinatory. It’s been 3weeks and I feel AWFUL! I’m still exhausted all day but can’t sleep at night, I’m short of breath, and have horrendous pain in my legs from my buttocks to my ankles, but only in the back of my legs and as my husband will say, I’m still talking trash. I start to fall asleep and talk out weird dreams… never again!

  • Tony August 11, 2015, 6:27 pm

    I want to give some encouragement to people starting out on a Prednisone regime. The key is to remember that everyone reacts differently to any drug. My experience has not been too bad. I have an autoimmune disease renal limited P ANCA vasculitis and was prescribed 60 mg of Prednisone for 4 weeks. This high dose definitely gives you a big boost of energy but also makes you hyper and somewhat aggressive.

    Sleeping was also a problem. At 4 weeks I went down to 30 mg and 3 weeks later to 15 mg. Every two weeks I was reduced again by 5 mg. The last week I went to 2.5 mg and stopped completely 7 days ago. Going from the high doses down to 10 mg I definitely lost the energy and the hyper feeling. Sleeping became more normal as well. Now that I am off completely I am starting to experience joint and muscle pain but it is not stopping me from doing my normal activities golf, kayaking, bicycling.

    My major complaint from the 4 months on the drug is the loss of muscle mass and strength. I should mention that I am 63 years old but have always been very active. I have never had any mood issues other than the “up” hyper feeling on the high doses. No one wants to be on Prednisone but my experience has not been all that bad. Tapering off slowly is definitely helpful and my doctor’s recommendations seemed to have made the withdrawal tolerable. Not sure how long it will take to get back to totally normal.

  • Jacqueline S August 14, 2015, 6:53 am

    What a lot of scary stories here! My ENT specialist prescribed Prednisolone 50mg a day for two weeks with no taper. I stopped two days ago. Miraculously my almost complete deafness because of blocked Eustachian tubes has disappeared! After one day the first ear’s hearing returned, then after four the other one. It’s been wonderful to have normal conversations, hear the phone and the birds. I am so grateful to him for putting me on it.

    I felt very high on the drug, rather manic with lots of energy, but found sleeping very difficult. Feel a bit odd now I’ve stopped, with rather sore eyes, but sleeping better. Going to take it easy today so have cancelled a golf game. Not sure if the cold turkey has kicked in yet and how I will feel. I see the specialist again this afternoon. He’ll be amazed how good the hearing test is going to be. Do hope all the contributors to this thread will soon have their health problems helped.

  • Mikayla August 15, 2015, 10:44 pm

    I was given a burst of 40mg/day once a day for 5 days to help with moderate asthma – I don’t get attacks, per se, just shortness of breath and a painfully wheezy cough after strenuous exercise (I’ve been dancing ballet/tap/jazz for a year and it’s triggered the asthma like never before). I’ve had it since I was ten, but wasn’t diagnosed until July 30 of this year. I’ve been wary of doctors and medicine for two years or so.

    I struggled with my weight in school (I’m 21 now) and was frequently ill and misdiagnosed with different things – because when I was 18, my mom and I started seeing a nutritional response therapist (holistic nutritionist who uses reflexes and electromagnetic waves to figure out what’s wrong within the body and what needs healing – and uses diet and supplements to heal it). I lost around thirty pounds within a year once I changed my diet, but the asthma never went away. Finally, against my better judgment, I went to the doctor and got diagnosed. They gave me the prednisone to kick off the Advair – which I ended up having severe reactions to without the prednisone.

    So, without giving me another option for an inhaler, the nurse and the pulmonary specialist told me “just take the prednisone for now, it’ll help jump-start your lungs”. I was warned that it could cause acne and weight gain, but I was not given a taper or any other warnings – just that. I made it through the fourth day of my prescription and had to stop – the first two days were fine, but by night three, I was having severe insomnia and sleeping 3 hours per night, then fussing and having crying spells from anxiety the remainder of the night (I have anxiety as it is).

    My depression worsened severely with two nights of little to no sleep, and I quickly found this page and discovered it was the prednisone. So…I quit cold turkey. Refused to take the last dose. And left a very peeved voicemail with the doctors, which they have yet to respond to. It’s day two without the prednisone, and I feel like I have the flu. I have always been one to keep going and going even when sick – but today has sucked. Migraine like no other, muscle weakness, continual loss of appetite (and I actually did NOT crave things on prednisone – it made me sick to my stomach) and nausea, lots of fatigue.

    I’m now terrified that I’ll never get any better…I am completely scarred by the medical industry at this point. I’m blessed because I’m in pretty decent shape health-wise (minus the asthma), so I don’t think I’ll get too much worse. But right now, I’d rather shrivel and die than take another dose of prednisone. Or go to the ER/back to the doctor/whatever. I haven’t felt this bad in years…

  • Kelly August 17, 2015, 12:17 am

    It has been 5 months since my prednisone treatment and I have been reading these posts constantly, they are what keeps me feeling like I’m not insane. 5 months ago I was put on prednisone for 15 days for a persistent cough (30 for 5; 20 for 5; 10 for 5). By Day 13, I couldn’t sleep at night, my heart was beating out of my chest, and I was dizzy. I went off the drug and did not take the last 2 pills. About 20 hours after my last dose, I had a “crash.”

    It started with severe diarrhea; extreme fatigue; stomach pains; dizziness; left arm pain; left breast pain; skin felt burning (in all different places); palpitations; numbness; chills; low-grade fever (100F) for 2 weeks; complete loss of appetite; head pounding; abnormal period (every 2 weeks for 2 months), ears pounding (could not sleep laying flat or with my head against the pillow); and an inability to handle any stress or loud noises. I am 39 years old with 2 little kids, so this was not easy. Most symptoms lasted for weeks.

    I began seeing a gastro doc for the diarrhea and a cardiologist for the pounding. Thus began my journey of specialists and procedures. They ruled out heart issues and GI issues. 6 weeks after the “crash” I had my a.m. cortisol tested and it was normal but the lower end of normal. 2 weeks later had a 24 hour cortisol and a myriad of other tests including a head angio CT, pelvic MRI, balance test, and the list goes on. All normal. All labs normal. The pounding in my ears was terrible but has subsided some.

    I started being able to cope about 10 weeks after the prednisone. I lost 25 lbs and literally could not eat for months (couldn’t even look at food) and the doctors found nothing abnormal in any test or labs. 5 months later, I am still not myself. I am thinking of going down the Lyme path (initial test was negative). My appetite is still not the same. I have good weeks and bad weeks, I actually have a few fatigue-filled days almost every week (usually toward the end). The strange symptoms just come and go. One week my neck hurts and the next week my nose pounds.

    I have lots of left breast pain (had an ultrasound for that too). What symptoms remain? Neck pain, lightheadedness, left breast pain, fatigue, tingling, etc. I try to workout, but it just exhausts me. I was thinking “how can this be due to only 13 days on prednisone? Maybe I have MS, maybe I have a terrible autoimmune disease.” My internist (who is fantastic) and endocrinologist doubt it could be the prednisone alone, but I am at my wits end and just waiting to feel better.

    Last week I walked 1.5 miles and felt great; but by the end of the week I could barely climb the stairs without my heart pounding and being out of breath. Over the last month I am slurring my words a little and I feel like my hands and feet are always tingling. I would love to hear from people who have been suffering for months after a very short dose like mine.

    • Lynn October 11, 2015, 5:59 pm

      Kelly, Many of your symptoms sound just like mine. I was on Prednisone 20mg a day, twice a day, for five days. After stopping Prednisone, I experienced most of what you listed, including tremors, night sweats, internal shaky feeling, muscle twitches/spasms, ear problems, weight loss, joint pain, insomnia, tingling, and mild fatigue. Like you, I thought I also might have a terrible disease and spent countless hours on the Internet researching my possible illness (we no doubt read the same sites about Lyme and MS).

      I’m no doctor, but I think what we both have is Prednisone-induced anxiety. Search “complete list anxiety symptoms,” and you will see many of the same symptoms you experienced after quitting Prednisone. The thing about anxiety is it has far-reaching symptoms that manifest in different ways depending on the individual, and when you’re already anxious, the Internet can make your anxiety worse because you start to believe you might have what you’ve been researching.

      It’s been 4.5 weeks since I stopped Prednisone, and I feel a lot better, though some of my anxiety symptoms continue to pop up. Thankfully, they don’t last as long as they used to. If you have the time, please let me know how you’re doing. Since we both had similar experiences, it might help us gauge how long it will take for us to recover from the Prednisone side effects.

      • Mary April 19, 2016, 11:36 pm

        Kelly and Lynn, I didn’t have all your symptoms, but mostly the anxiety. I think your explanation Lynn is very powerful. I hope you two are doing better. Any update from your tests Kelly or your anxiety management Lynn is greatly appreciated.

  • Vickey Ohm August 19, 2015, 9:54 pm

    I have had several short courses with tapers of prednisone. It was a last resort drug due to autoimmune chronic idiopathic hives. Living with hives was hell. ALWAYS itching, burning, stinging with heat as well. Prednisone was like a life saver are the time. I felt very good while taking it. Even my joints had less pain and swelling. The last course was 60 mg a day for one week and no taper. Well like most of you, it has not been fun.

    I am puffed up like a balloon, I hurt all over and my mood is downright nasty at times. So fortunate I don’t work. The good news is the new med (xolair) for hives is finally working. I am of two minds about prednisone. Very grateful it brought my itching to an end. NOT happy about the withdrawal.

  • Pat R August 23, 2015, 5:59 pm

    To All persons Who have shared prednisone experiences: So far, this has been the best website for understanding that I am not alone with these side effects, although I don’t wish them on anyone. I got acute bronchitis August 6,2015. and went to an Urgent Care doctor as I couldn’t breathe well. He put me on antibiotics and 40 mg prednisone x 5 days, tapering to 20 mg for 5 more days, then abrupt withdrawal.

    The bronchitis is thankfully gone, but the extreme fatigue, muscle/joint pain and mental depression, anxiety, brain fog, horrible nightmares, etc. – are worse than anything I have ever experienced. The worst of it is I have seen three doctors, this week. Each shifting the buck and my (new) internist telling me I need a psychiatrist, but none knowing enough to taper the prednisone.

    Believe me, I am a 12 year breast cancer survivor, having had 4 operations to survive, and I NEVER, with chemotherapy, radiation, and the operations, went through what I am going through now. I feel completely abandoned by the doctors, and truly don’t know how long these scary side effects will last or what to do to find help. Thanks for letting me share. -Patti R

  • Kristen R August 26, 2015, 4:06 pm

    I am posting another comment about my withdrawal from prednisone I believe that people want to know how long it takes after a long period of being off of the drug to feel better. I’ve been off the drug for 15 weeks I have lost 65 pounds my joints and muscles still don’t work right I still can’t lift my arms. I can still only walk maybe 10 steps with a cane. I am fatigued all the time but things are getting better. When I first came off of prednisone I felt like I was run over by a truck.

    I do not feel that way now I just feel fatigued with muscle aches. My hands seem to go to sleep a lot and if I get too hot I have a tendency to be nauseated. I still take vitamin C and calcium with vitamin D, and Tylenol in the mornings my hands ache real bad and they are hard to open and close however once I start moving around it’s much better. Although not so much moving around is just sitting up and working with my hands and taking a Tylenol of course. That seems to work best.

    I still have not been out of the house in 5 months because my legs don’t work well enough. During the day I get fatigue quickly and have to lay down. Although I can only lay on the couch not flat in the bed it hurts too bad. I look back over my other three posts of 9 weeks 4 weeks and 4 days and I can see a big difference. I believe that by posting the dates of how you feel and then going back and looking at what you posted you can see a difference. I want my progress to be faster but it isn’t. I have good days and I have bad days

    Still can’t lift my arms so I have to bend my head to be able to comb my hair at least it gets combed. It still hasn’t been washed so here it is 5 months and I still haven’t got to wash my hair, but it’s combed! In some of the instructions I see that you’re not supposed to exercise your supposed to conserve your energy however in some of the comments I see that a lot of people have tried exercising and seems to be a little better. I guess it’s a toss up if you can you can if you can’t you can’t.

    So overall after 15 weeks I feel better at times, I do see progress. However I’m just as anxious and impatient as always to get better to make my legs work and to make my arms lift. I read somewhere that more protein helps. I should eat more protein however since I have very little appetite that’s a struggle. Like I said I’ve lost 65 pounds in 15 weeks. So for now good luck to everyone I hope this has gives you a little idea for a timeline and encouragement, although still there is a struggle ahead.

    • BB September 18, 2015, 1:16 am

      Hi Kristen, I took Prednisone and stop it cold turkey. After that I had almost the same symptom as you on both of my legs. I could not get in/out of my car without using my arms to lift it up, and I could not do anything with my legs without tears. After a few days, my wife who is a Chiropractor had decided to have Ultra Sound (This machine is using for soft tissue) on my legs , after 2 days all the pains were gone.

      However, I still needed to use my arms to raise my legs to get in and out of the car for another 3 days. All the legs muscle and tendon were stiff and didn’t response. However, I am able to walk slowly after a week since all the muscle in the legs are response better. Thanks god! The Ultra Sound works for me. Hopefully, It works for you too.

  • Ryiaala August 26, 2015, 11:37 pm

    I’ve been on prednisone for 2 years next month. I was diagnosed with polymyalgia rheumatica – without this drug, I was unable to move. With this drug, I can move and live a normal life. I started tapering the drug about 8 months ago (was on 20 mg/day) and dropped it by 1 mg every 2 weeks or so. When I got down to 11 mg/ all of my symptoms returned. My rheumatologist (I have a great one) increased the dose back up to 15 mg/day, at which dose I was fine. I was on that for several months and am now dropping the dose 1 mg every 6-8 weeks. I’m down to 12 and will drop down to 11 next week.

    A couple of weeks ago, I was in such severe pain, that I thought I would need to increase the dose again. Well, it turned out that the pain was caused by two separate issues: first, it turns out that I am allergic to the chemicals that the city sprays to control the West Nile virus mosquitoes – the day after they sprayed that, I was much, much worse. Not too surprisingly, after thinking about my symptoms and the timing, I am pretty sure that this disease was caused by the spray – I came down with it immediately after the city first sprayed for mosquitoes.

    After that pain reduced, I took some family advice to try to help my body deal with inflammation, and started taking Curcumin (derived from tumeric, which is a natural anti-inflammatory) – my pain immediately returned and I could hardly move. Well, long story short, it turns out that I am either allergic to the Curcumin, or it doesn’t react well to the prednisone that I am already taking. I know this, because once I stopped taking it, my pain disappeared.

    I know that a lot of you have had bad side effects from getting off of this. I agree with some of the other posters – once you start taking this, it needs to be reduced VERY slowly. Other than the incidents above, I am not having any of the side effect that many of you have as you reduce the drug. Of course, I’m getting off of it very slowly. And I am sure hoping that this will cause me to NOT have any of the nasty side effects that many of you have.

    My suggestion is to be very careful in what supplements that you take. I have increased my intake of natural anti-inflammatory foods (cauliflower, etc.) and it seems to be helping. I certainly won’t try another “natural” anti-inflammatory until I am off of this stuff. You never know what supplement that you take could react badly with the drugs that you are already taking. Anyway, I’m glad that I found this site. I’m going to keep checking to keep up with everyone. Hope all goes well for all of you.

  • Shari August 27, 2015, 2:49 pm

    I too have been going through a very difficult time after stopping Prednisone after about 3 months, going from 25 mg. to none. It was prescribed for chronic muscle issues in my lower back. The irony is it barely helped around the 25 mg level and once I was on it a couple of weeks, I had no choice but to taper. I messed up, though, thinking I could taper by 10 mg to 15 rather than 25.

    What a mistake. That night I experienced the awful feeling that my stomach and whole rib area were on fire. I got muscle spasm all along my ribs and stomach. The next day I was so sore it felt as though I had been beaten. The problem persisted and my rump and hips also got extremely sore and stiff. The agony was an 8 or 9 on the pain scale. And I still had the original back issue!

    My life became a never-ending struggle with the pain, night and day. I refused to stay on the Predmisone longer than necessary, going back to 20 mg and tapering by 5 every 5 days, until I got to 5, and then I went to 2.5, and then 1. I figured I might as well get through the hell now rather than delaying it. It is still bad, 4 months later. I get awful sweats on my scalp, face, and lower back.

    They can happen anywhere and I have been very embarrassed by them. I feel like I have a low-grade fever most days. The burning in the torso area (it is on fire as I write this) continues, though it is not always all day every day now, just intermittent throughout the day. I guess that is progress. Some days my hips hurt SO BADLY I can really not get in and out of a car or walk very much.

    This has made me so depressed (though I do not talk about it with my family because I do not want to be a burden or a whiner). I cannot ride a bicycle anymore at all and cannot walk much. I used to lift weights and do yoga–no more. I have spent out of pocket over $2000 to see a physical therapist. She has helped but it very slow going. I do see some improvement, and hope to be over this by Christmas this year.

    What a nightmare, this Prednisone. Or lack of it, as is now the case. My body has not gone back to producing enough cortisol, I gather. This site has been incredible for me and I thank all who have posted. I would never have known what was the matter otherwise. I might have ended it all if you had not given me the information my health care people did not. God speed!

    • Shari December 7, 2015, 3:47 pm

      I just reread my original post. I had said I hoped to be better by Christmas. Well, I am better. The sweating and the burning in my stomach and rib area have abated (though I still get a return once a week or more). I am not near 100% but I am closer! Thanks for all these posts. I wish more folks would do progress reports though.

  • Amanda Gainer September 9, 2015, 2:03 am

    I was put on 40 mg of the medicine because I was diagnosed with Lupus in December of last year. I finally got off of it last week. So far the only thing keeping me from having severe side effects was that my doctor put me on Cellcept and Plaquenil a third to half way through me tapering down. So far the other medicines seem to be holding down the fort. I’m glad for the weight loss and decreases in appetite because when I first started my brain felt fried and all I could think of was food. I gained 40+ pounds and it was kind of hard for me to cope with. I’ve lost about 20 now and hope to see a decrease. The only bad side effects that I have are headaches and diarrhea.

  • Brian September 16, 2015, 7:21 pm

    Thank you all so much as I thought something serious was happening to me, I was prescribed a 5 day dose due to an asthma attack and within 3 days started to experience a massive downer, never suffered from any form of depression or stress so the symptoms where unknown which just added to the anxiety, I cried for the first time in 20 years and had no reason.

    Seriously this overwhelming sadness has just consumed me. Spoke to a doctor and he said this was likely due to the steroids, although intense and sudden not impossible. Without taking anything away from others misery I feel 100 times better knowing that I am not loosing my mind and this was out of my control. Your sharing has most definitely help me.

  • Cait September 18, 2015, 4:50 am

    My husband got diagnosed with lymphoma, and part of his chemo treatment is prednisone. Starting on the first day of a chemo treatment for five days, he is supposed to take five prednisone pills each of them 20 mg. So 100 mgs per day for five days. Then after the five days are up, he’s supposed to stop taking it cold turkey. His first treatment was a week ago and his five days of prednisone stopped two days ago.

    He clearly feels awful in many ways and I feel so bad for him. Yesterday, his first day off of it, he and I were joking about it and he told me it feels like I beat him with a bar of soap wrapped in a towel in the night. I hate to think of what he’s going to feel like tomorrow or even after the next round of chemo. All of the many, many side effects of these drugs and the prednisone has ended up being -so far- the worst of them.

  • Jennifer October 5, 2015, 1:14 am

    I took my last pill on Wednesday. I was taking 20 MG twice a day for 7 days… I’m going crazy now. I have dry mouth, nothing taste right, I too have lost weight while on this med. I’m not sleeping right have blurred vision, feel lightheaded. All in all just feel like crap. Nauseous. I don’t know how long this is going to last but I’m so over it already. Never taking this med again. This sucks.

  • Chelsea Winters October 5, 2015, 10:49 pm

    I broke out with hives and was given 20mg of prednisone for a week and the hives never went away so I was then prescribed 30 mg for 2 weeks with no tapering. Well the night after I stopped using the prednisone I was woke up at 2 in the morning with excruciating joint pains in my legs, I ended up going to the ER because the pain was so bad!! I will never take that prednisone again that stuff is awful!!! They don’t warn you of these terrible withdrawal symptoms when they prescribe you and neither does the paper that comes in the prescription.

    And also when I went to the ER I felt like they thought I was making up that I was in terrible pain and I told them that I thought it was from taking prednisone and they acted like nobody has ever complained about withdrawal symptoms from that crap!!! I’m glad there are others out there that know exactly what I’ve been going through. I’m hoping the pains go away soon because I’m almost out of my prescription muscle relaxers which are the only thing which seems to help full the pain.

  • Sylvia October 16, 2015, 9:04 pm

    I have read most of the comments left on this site, and I have to say that I can’t believe how many people out there have been negatively affected by this drug. I, too have taken Prednisone to help treat my Rheumatoid Arthritis; however, I will say more positive than negative about this drug. I agree, it is not a good idea to quit “cold turkey.” Prednisone must be tapered off, aggressively under the direction of a specialist or experienced Rheumatologist, which I had.

    I’ve experienced pretty much everything with this drug from tapering off appropriately to quitting “cold turkey”. Overall, it has done wonders for my inflammation. Unfortunately, I gained a lot of weight on Prednisone. I went from weighing 117 pounds to 145 pounds, and with my small frame, that is huge for me. Since I was diagnosed with Rheumatoid Arthritis in 2004, over ten years ago, I have been placed on Prednisone off and on. Never did I take it more than 2 months in all those years.

    In my case, Prednisone was only used to give my body a quick jumpstart while taking other treatment medication for my condition, such as Hydroxychloroquine, Folic Acid, and Methotrexate. Since Methotrexate takes approximately a month to set in, Prednisone acts as a substitute. As the Methotrexate sets in, the Prednisone becomes less and less needed which explains the reason for tapering off.

    Anytime I have had to resume Prednisone, it has been during a time when I’ve had a lapse in my Methotrexate as well as the Hydroxychloroquine and Folic Acid, which unfortunately, I have had to do at no fault of my own; a change in my health insurance coverage caused a lack of coverage of my medications. Now that I have had continued and consistent health coverage for the past 10 months and don’t anticipate any lapses to occur, I have been placed on Prednisone along with my other medications (back on the treatment) again as of September 2, 2015.

    Yesterday, October 15, 2015 was the last day I had to take prednisone. I start out with 30mg a day, reducing the amount by increments of 5mg after a week or week and a half until I got down to 2.5 mg a day. Now that Methotrexate has been in my system for a month now, I foresee no more problems of flair ups. In fact, I have on two occasions during the duration of my Rheumatoid Arthritis been able to go without any medication at all lasting for about an entire year each time.

    In other words, I have gone into remission twice with this mixed connective tissue disorder. Prior to this disorder, I had Myasthenia Gravis from 1996 – 2000 and went into full remission November 2000. I am extremely optimistic that I will go into full remission from this mixed connective tissue disorder again and for the last time. Another thing I make sure is that I am staying fully active and eating healthy as well as staying spiritually healthy. All of these factors contribute to my success.

    So hang in there and be sure to always check with your specialist as to how to taper off. Keep your body in motion. For example, I attend an intense boot camp three times a week, 1/2 hour at a time and I punch my punching bag at home in my garage, lift free weights, and complete my cardio by walking up and down four flight of stairs at my work rather than using the elevator.

    Most importantly, stay stress free and remove the negativities in your life. Surround yourself with positive people and think POSITIVE! Good luck!

  • Jean October 18, 2015, 10:51 pm

    I’ve been taking prednisone to treat polymyalgia rheumatica. There is no other treatment for this disease. What I can’t understand, reading through the comments, is why so many people appear to have been given prednisone when another treatment might have worked as well, or nearly as well, without the risk of horrendous side effects. The most important thing I’ve learned is that the taper has to be VERY slow once you get down to about 10 mg dosage, and have been on the drug for more than two weeks. So slow that you will likely only drop 1 mg per month, but below 7 or 5 mg the side effects, so I am told, diminish to practically nothing. I’m just reducing to 8 form 9 so I hope these people are right!

  • Amanda October 19, 2015, 7:42 am

    I was diagnosed with myasthenia gravis in Dec 2012, and started with prednisone, gradually increasing from 15mg to 35mg over 5 weeks. Stayed on that for 4 months, then tapered of by 5mg per week to get off it. Stayed off it for 6 months, then on it for the next 6 months. Off for 6, on for 6, and so on. Until the last session 2 Jan – 2 March 2015, each time tapering off slowly. Each time I went on it, it fixed the extreme muscle weakness and fatigue, but never the ptosis.

    Each time I went off it, after a few months I once again struggled to get up out of a chair and walk around not looking and feeling like an 80 year-old person. Anyway, now my cortisol was tested for the first time, and it is <11 nmol/l, while it should be between 185 – 625 nmol/l. So low, the pathologist doing the blood tests SMS'ed me from the lab asking if I were alright because my test results showed I am in adrenal failure. I am just now wondering if it is still the prednisone causing this low cortisol, even 8 months after I weaned myself off of it.

    I am also fighting unexplained weight gain, even though I am (and have been) on a strict diabetic eating plan since diagnosed in 2012. I now started taking natural supplements to support adrenal glands in order to get them producing their own cortisol again – ashwaganda and licorice root. Still trying to find holy basil somewhere. I am hoping my body can still restart producing its own cortisol. If not, I am in trouble.

  • leslie October 21, 2015, 4:41 pm

    Reading these posts of prednisone I feel somewhat comforted that I am not losing my mind. This drug is dangerous. I have taken it twice for chest infection asthma and it was hell on and worse coming off with taper. I am so weak I can hardly get out of bed and the panic attacks with near fainting and hot/cold sweats. Cannot work. I am an active person and athlete and down for the count. I am self employed and cannot work. If anything my chest is just as sore. How can doctors prescribe this and not follow up? I agree with one post. Xanax has not helped. I feel like another person. Help! Does this get better???

  • Inoa October 23, 2015, 2:11 am

    On October 14th I was given a prescription for a really bad allergic reaction from something I must have came into contacts at a weekend at the lake (woods). I weigh around 115 pounds and was given a starting dose of 80mg for the first 3 days then 60 for the next 3, then 40 and so on. I stopped taking them after 6 days, I was actually going mental. I could not figure out why I couldn’t sleep, be calm, I was anxious, depressed, didn’t feel like myself, acted like a completely different person.

    It has now been a couple days since I have been off of them, and I’m still having major anxiety attacks and going completely manic. I took some gaba and lorazepam tonight to try and calm myself down, and I really hope I can sleep tonight. I may take a sleeping pill just to make sure. I would never recommend this medication to anyone, and urge people not to use! I would take a full body painful, itchy rash over feeling this way any day any time. I wish the Dr. would have warned me about what could happen, it took awhile for me to realize the medication was making me bat sh*t crazy!

    • Tracy January 22, 2016, 10:03 pm

      I have CIDP and Bipolar Type 2. I had an allergic reaction to IVIG so the neurologist put me on 500mg Prednisolone once a week. I experienced insomnia, terrible moodiness, anxiety and eventually realised it was the Pred causing it. I contacted my Psych nurse and she said I should never have been given the Pred without the Neuro discussing it with my Psychiatrist.

      I was told by the Neuro to stop taking the Pred which I have – no tapering. Thank goodness for this site I don’t feel like I am in this on my own – can’t wait for the anxiety to go away – and the old ‘me’ to come back. If the Dr had sat me down and told me exactly what the side effects could be – I would never have touched the stuff.

      I guess I have learned the hard way to not assume that Dr’s know it all – because unfortunately they don’t – and we have to live with the consequences. I hope we all feel better soon. Take care everybody.

  • Emily October 24, 2015, 6:10 pm

    I was given prednisolone for viral headaches [initially 50 mg a day for three days then 25mg a day for 3 days]. Headaches returned – so then 2 more weeks – 50mg 5 days, 25mg 5 days and 12.5mg for 5 days then stop. I could tolerate the side effects from being on the tables -sleeplessness, irritability, heart palpatations, anxiety etc as I knew I was only on them [hopefully] short term. My heart goes out to those of you who are on prednisolone for months on end and repeatedly.

    It was the horrendous side effects from withdrawing afterwards from the drug -everything that was mentioned above in the article – every symptom – including the rebound headaches, that devastated me. If I had known before that the headaches afterwards were as bad as the ones I was being treated for I would never have commenced the treatment. I was fine for about 5 days after I finished the last tablet, then the nausea and dizziness hit me.

    The fatigue and body aches were unbearable – I was back to lying on the sofa again [just dragging myself off to get my children to and from school] and hating that I couldn’t live my life normally anymore. I couldn’t work during this time as just felt so dizzy and sick. I read in the article above it can take 3-4 weeks to recover and for the symptoms to go away. It took 7 weeks altogether.

    I had a low grade temperate for most of this time. I am now feeling good again and have started to take long walks in the day [a far cry from the exercise I used to do, but glad to be able to walk further than the end of the street again] I still have weird aching in my joints, but don’t have to take pain relief for those or headaches anymore. The effects of prednisolone leaving your system [and your adrenal glands inability to make cortisol] last a long time, but hope to those out there that eventually you will start to feel better like I do today.

  • Vanessa October 25, 2015, 6:35 pm

    Everything I read on this website explains the situation of my husband. He was diagnosed with Sarcoidosis, he almost went blind. He was on 80mg of Prednisone. Then after a long time of lowering and lowering he went down to 7,5mg. Now since a week or a little longer he is down to 5mg and since then he is having the same symptoms like everybody is describing here. On the 7,5mg he felt great, he thought he is getting better, the disease is gone, he had like new energy, he was excited.

    No sweating, no mood swings, nothing. He was really excited. Now on the 5mg he feel very sick again. He could sleep the whole day, a lot of times he is saying his stomach hurt, he feel like he has to throw up, he is sweating when he just goes outside for 5 minutes (with the humidity in Florida) and just simple tasks like cleaning make his joints hurt. We were really hoping that he is getting better but I see it is still a very long way and that makes me sad.

    He even mentioned like other people in here that he felt like he is dying. Or he is wondering if that’s how it feels like when you’re dying. This makes me really afraid about how everything will be going forward from now. I hope his symptoms will go away in a few weeks and his body will get used to not taking this drug anymore some day.

  • DAWN October 28, 2015, 1:25 pm

    I was on 30mg of this drug for 8 wks. Within 2wks I was breathless and felt ill but couldn’t reduce as the consultant rheumatologist wanted me on it. After 8 weeks I was to reduce I dropped 10mg on the advice of a doc then couldn’t see within 24hrs as though a migraine was starting. Then, even though I was tapering I had a cold turkey weekend, severe vomiting, the worst chest pain I have ever had and aching in every joint.

    I thought I was dying. I was eventually given morphine then anti sickness drugs thank god. I’m now off it as of today. Have sore lungs and am exhausted, have the shakes and hot flush like symptoms. I’m sleepy and am off work. The drug is awful. I never want to have it again.

    • jean October 29, 2015, 1:58 am

      Dawn, is someone looking after you? – you need to have a doctor make sure your body is producing natural cortisol in the adrenal glands or you may become even more ill. You really can’t come suddenly off prednisone if you’ve been taking it for more than a couple of weeks. And even if you were tapering your body may still need a tiny dose for a while longer while the adrenal glands wake up.

  • Dottie October 30, 2015, 1:28 am

    I developed PMR a year ago. The doctor started me on 10 mg of prednisone a day and slowly tapered me off. I took my last pill 3 weeks ago. My stomach feels like it’s been scraped raw. I’ve lost 10 lbs. because eating is no longer an enjoyable experience. I’m so tired all the time. When I told my rheumatologist about these symptom she told me it was all in my head, that there was no withdrawal from prednisone! This is why I hate to go to doctors. My primary care doctor now wants me to have a scope to check on the condition of my stomach. More fun. I will never take this drug again. Trying curcumin, I have read good things about it.

  • Tina October 31, 2015, 1:43 am

    I was prescribed prednisone at doses of 40 mg. tapering down to 10, over and over from May to October, to where I was never off them more than 2 – 3 days all summer, due to severe allergies and COPD and the need to breathe! I think they were necessary, but NO ONE MENTIONED WHAT WOULD HAPPEN WHEN I STOPPED!!! IT’s BEEN TWO WEEKS and I JUST NOW got the willpower to come over 5 feet from my couch to google symptoms. I had surgery 2 weeks ago, and didn’t know if something went wrong with breathing there, because my ability to breathe has also worsened horribly. Can’t wait to talk to my doc on Tuesday.

  • Elizabeth November 2, 2015, 10:08 am

    I am 75 years old and a few months ago was diagnosed as having polymyalgia and put on prednisone by my doc. One week of absolute euphoria was great and then started bringing down the dose from 20mg to 17.5 and then 15mg. Rheumatologist advised further tapering every two weeks and the results have been awful. I have stomach pain, headaches, muscle cramps, joint pain and am now walking with a stick.

    Tears come easily and exhaustion is constant. Give me back my old life!! It has been an eye-opener reading all the posts here. I really think that this medication has a lot to answer for.

  • Leigh Pronk November 4, 2015, 5:39 pm

    Been on prednisone for two years now. The last two months coming down from 7.5mg to 1.25mg every 3 days now but have muscle & joint pain everywhere. Have resorted to taking zefo 8 anti-inflams but a bit worried about being on them. Can I just stop the prednisone now? It’s such a low dose I am on. It’s for pericarditis & my symptoms have not returned. Thanks, Leigh

  • Reba November 7, 2015, 10:23 pm

    I went to 3 docs before I was finally sent to a neurologist. After 10mins of listening to me he diagnosed me with Polymyalgia Rheumatica. I took 20mg of prednisone for one month. Then dropped to 10mg for another month. I am now on a regimen of 5mg plus four mg (9mg/week); then 5mg plus three mg (8mg/wk), etc., by dropping 1mg a week until I’m off altogether. I’ve had many of the same symptoms as many others but have tolerated them.

    Fatigue has been the worst as I’m a very active 77-year old. I give in to it and take a short nap then feel much better. Still have 7 weeks to go. I take meds for anxiety and depression which I have been doing for years. Think they may have helped keep me sane during this. I feel that I am blessed to have a wonderful doctor to help me through. I’m exercising by increasing my walking little by little. My main concern has been weight gain as I’ve got a huge belly.

    The thing that I’ve noticed is that my abdomen is hard as a brick! All the Spanx in the world won’t work on that! Has anybody noticed that the extra weight in the abdomen is hard not fatty?? I can only hope that when I’m off the Prednisone, with good nutrition and exercise I can feel like I did before this. I am very blessed and have tried not to let this get the best of me. I pray that God will be with all of you who read this and help you get the help you need. Don’t give up!

    • FRED November 8, 2015, 11:47 pm

      You are right about the stomach being hard as a brick. I have noticed this for the past few weeks, but thought nothing about it until I read your post. So far I have gained about 5 pounds in the past 4 months and holding, but it isn’t easy.

      I am semi-retired, but still stop in at work every afternoon to help son run our family business (small manufacturer). I am very active and seldom stop working and lately have been doing a complete revamp of our inventory control system, installing metal plates to hold inventory control stickers and making maps of each area of our plant for future reference. I am on a ladder, using a drill and power screwdriver.

      I like to work so this is not a problem, but at the end of the day am not as chipper as I was before PMR (fatigue sets in early). Today is a Sunday and I am taking it easy, still at 9.5 mg of Prednisone. I plan to see how I feel later in the week, hoping that I can get back to 9 mg soon. I will advise what my doctor says at my next appointment on Dec. 2nd.

  • Fred - Age 84 November 8, 2015, 6:00 pm

    I was diagnosed with PMR on July 8th of 2015, but had plenty of symptoms starting in Jan. of 2015 worsening gradually all winter and spring of 2015 (pain in both shoulders, later both hips, some in lower back, pain in upper arms, difficulty walking as if I was drunk, could hardly drive a car (pillow on seat helped a little), really hard getting out of car and had to wait a few seconds before walking, no headaches, couldn’t get out of a chair or from bed without help, could not turn over in bed, couldn’t lift my arms beyond my waist, sore for 1-2 hours in the morning – a hot shower helped).

    My Rheumatologist started me on 15 mg Prednisone (10 mg in AM and 5 mg in PM). Pain went away within 24 hours and I felt like a new person. I have had no trouble sleeping at all. In early August, dosage was reduced to 12.5 mg (7.5 mg in AM and 2.5 mg in PM). After about 3 weeks dosage was reduced to 11.25 mg daily on 8/23/15, then to 10.0 mg on 8/30/15. So far, so good and no side effects as yet. Saw my doctor for 2-month checkup and he changed dosage to 9.5 mg on 10/3/15, then dropping to 9 mg on 10/13 and to 8.5 mg on 10/24. At 8.5 mg I was starting to feel some pain, especially in lower back plus fatigue, but continued.

    On 11/4/15 I went to 8 mg a day (6 mg in AM and 2 mg in PM). Pain started coming on fast, so called my Dr. on 11/6/15 and he asked that I go back to 10 mg.daily and once I started to feel OK, drop the dosage to 9 mg per day until my next checkup on 12/2/15. Not wanting to go too fast, upped the dosage to 9 mg the first day and then to 9.5 mg the second day (7.5 mg in AM and 2 mg in PM). I am feeling better already, so may stay at 9.5 mg per day for awhile, but if pain returns, will go to 10 mg per doctor. If the 9.5 mg daily works, I will then drop back to 9 mg per day until my next checkup on Dec. 2, 2015.

    About Prednisone – Until taking my initial dose, I was a semi-invalid and felt I probably had bone cancer all over my body. Hearing about all the side-effects of Prednisone, realized that I had no options, but without it, would probably be bed-ridden by n0w. So even with such side-effects from the withdrawal, it has done wonders for me and I am glad that I was finally correctly diagnosed with PMR and prescribed the medication. Many of us might have forgotten the extreme pain that was relieved with Prednisone.

    I am hoping that withdrawal pain that is coming will be minimal. It could take another year or more on the medication, but am hoping for a remission. I have a feeling that my PMR is still with me, so a reduction below 10 mg probably is not possible as yet. What is tricky is that the symptoms of PMR are about the same as withdrawal symptoms of Prednisone. I plan to ask my Rheumatologist more about how this works in December. In my case, once the dosage drops below 9 mg per day, noticed the increasing return of pain, but nothing at all like the extreme pain of PMR.

  • David November 9, 2015, 8:45 pm

    Although I have not read all 260 comments, I think I may have the record for being on Prednisone for the longest duration—23 years! I have had Chronic Kidney Disease since I was very young. Problems since childhood and total renal failure at age 19. I am now 53. I have had two kidney transplants, years of dialysis, and a number of complications as the result of my disease, as well as the medications. It’s funny, but when I used to tell people that I have a kidney transplant, their reaction is like “good, now everything is fine now.” NOT!

    The problems is, one.., transplants are never permanent. And two…, the immunosuppressive drugs have caused numerous problems including; susceptibility to infection, emotional disturbances which I developed Social Anxiety Disorder. The Prednisone caused damage to my left hip (femoral head), which causes joint pain and limits my ability to perform certain activities. The meds have caused severe hyperplasia on my face, which has led to skin cancers (both Basil Cell and Squamous). I have had a least ten skin cancer surgeries to remove.

    My point being, that a kidney transplant is better than dialysis, but it is far from perfect. Getting back to the subject of Prednisone…, my second transplant lasted about 22 years. If you know anything about transplants and how long they last, that 22 years for a Cadaver kidney, is practically a record! However, that also means that I have been on Prednisone for all those years also. About a year ago that transplant started to fail. Since I still had some function in that kidney, my doctor kept me on the Immunosuppressive drugs (Cyclosporine and Prednisone).

    However, you can’t continue for more than a year on the immunosuppressive drugs while you are also doing dialysis because of high susceptibility to infection. About a month ago he took me off Cyclosporine. I had a few withdraw side effects, but not much. However, when he began to take me off Prednisone, it was a completely different story. I was taking 10mg’s, and so he told me to alternate taking my dosage every other day for two weeks and then stop completely.

    The first day that I did not take the Prednisone, as the day wore on; it started to hit me hard. All the symptoms that most of you have mentioned, I got. Fatigue, weakness, joint pain, body aches, fever, blood pressure changes, nausea, lack of appetite; just about everything on this articles list. At the time I told my wife I wasn’t sure if these were withdrawal effects, or maybe I was coming down with the flu. However, the next day when I took my dosage of Prednisone, I started to feel better again. I then went on-line and read different articles about withdrawal symptoms from Prednisone, including this one.

    Based on what I read, it seemed to me like the way my doctor was having me wean off the Prednisone was too aggressive. I then modified it to 10mg’s one day, and then 5mg’s the next day for a week. Then I lowered it to 5mg’s every day for a week. Then 5mg’s one day and 2.5mg’s the next. Now I am on 2.5mg’s alternating every other day for another week until I cut it out completely. I am still feeling the withdrawn side effects, but they are getting better.

    Some of the articles I’ve read, including this one, mentioned that depending on how long you have taken Prednisone, it can take up to 12 to 24 months to fully get back to normal. Given the fact that most people only take Prednisone for weeks, or some for months, I’m wondering how long it will take me to get back to normal considering I’ve been taking Prednisone for 23 years! God help me!

  • Myra Peskowitz November 10, 2015, 3:23 pm

    I was on a cyclical dose of prednisone every month for ten months and then daily for three months to treat an extreme case of hives. In the last month I tapered down to 1 mg a day and then stopped three months ago. I am still having withdrawal symptoms. Most of my symptoms have to do with muscle weakness, fatigue, pain and depression.

    Despite an active exercise schedule I am unable to build muscle tone and my walking has been affected. My doctors have told me that I could expect to have one month of withdrawal for each month that I was on prednisone. Has anyone else had withdrawal last this long?

    • Shari S December 7, 2015, 3:24 pm

      Yes. Longer even. I have read it takes 2 months for each month it. That is my experience too. I was on it 4 months and an in moth 7 of withdrawals. I am definitively improving, but very slowly. I work on rebuilding the muscles in my legs, butt, and hips every week. Walking was a painful nightmare for so long. You will recover eventually. I know it is so hard and you feel defeated, panicked, and even embarrassed. Do not give up.

  • Evette November 10, 2015, 6:44 pm

    My 15 year old daughter went to the ER clinic on Sunday for an upper respiratory viral infection and possible pneumonia. She has mild asthma and was wheezing. The doctor prescribed a med pack (Methylprednisone). I should have known better because my other daughter has used it for her asthma and was hearing voices after a few days. She was told to take 6- 4mg pills the first day and then taper every day for the 6 day pac. After 4 pills she went psychotic.

    I called the doctor who prescribed it and her pediatrician and the pharmacy and they have “never” heard of this before? What is going on with the medical field? I took her to the Childrens Hospital ER and they gave her viserol (an antihistamine) to calm her down but she is still a complete mess. She can’t function and is in high school missing her work. She only had 16 mg total and then we took her off of it. They said it needs to “burn” off but do not know how long?

    • Mary April 20, 2016, 9:55 pm

      Evette, how is your daughter now? Everyone’s stories make me sad, but to hear that a child has to deal with this breaks my heart. I pray she is ok.

  • Gutsick November 16, 2015, 8:24 pm

    I have been on 20-30 mg a day for months to deal with ulcerative colitis. While on it I shook and stuttered and felt weak and hungry a lot. Gained weight and had mood swings, depression, and anxiety. It did seem to help keep the constant diarrhea in check and for a little while I was not bed-bound and actually could be out in the real world. I am losing my hair and I get small blood spots that appear to be between layers of skin.

    They start small and can grow to the size of a penny. They are fragile but if left alone they go away. If scratched or bumped they bleed and then heal like any other wound. They only appear on my arms. The doctor has me tapering. At first we tried 5 mg per week. This resulted in terrible headaches, eye aches, and tooth aches, along with body and joint aches that felt like someone worked me over with a 2×4.

    Terrible fatigue, along with even more depression, anxiety, and mood swings. In addition, the diarrhea came back and now I have to run at least 15 times a day to the john – urgent and uncontrollable. The doctor dropped to 2.5 mg per week reduction and some of the pain is lower and the number of days it lasts seems to be a little shorter. So now I am enduring the best I can and trying to cope with all this.

    I am very worn out and the side affects are bad enough that I may have to slow the taper even more. There is just so much I can take for just so long. I know I will pay for using this stuff and plan to get through it, but it is NOT easy and you can expect a lot of side affects and suffering. Right now the symptoms it was prescribed for are the ones that are coming back and then some. I do not know how this is going to play out.

    I do not shake very much now. I have trouble staying awake with the increased fatigue and weakness. The taper business is a long term deal, make no mistake, and going slow seems to be the best idea. Or not using it at all if you do not have to. I can only wonder how bad it will get when the adrenals try to start up again as I am told that’s going to be the worst part. So far the doctor has been anything but helpful and they appear not to know what to do. Not exactly encouraging.

    • Sarah January 11, 2016, 3:49 pm

      I am a 22 year old woman taking prednisone for a recent UC diagnosis. Sorry to hear that it’s not working for your symptoms! My GI specialist is amazing and very well versed in IBD. I am taking 40 mg of prednisone daily, and my tapering process is starting tonight by 10 mg dropped every week. In addition to the prednisone, I am taking 4 apriso daily. This combination has been extremely effective for me – I am going into remission after just weeks of treatment.

      I would recommend asking your doctor about this combination! As for prednisone side effects, the tapering process has me a little worried! I’m already experiencing muscle aches and pretty bad muscle weakness in my legs specifically – I cannot stand up from a kneeling position without help. I’ve also lost 45 lbs in 1 month, despite eating a high fat diet. Additionally, I’m having issues with depression, anxiety, insomnia, and a facial rash that’s pretty persistent.

      My GI recommended taking Benadryl to help with the anxiety and insomnia every once in a while, to avoid the need for anti-anxiety meds. This has actually worked, maybe this can be helpful for you too if you are having similar issues. Another option for UC if the prednisone is not working is to begin Humira or Remicade injections. Maybe your doctor will recommend this! In any case, I wish you luck in getting your UC into remission.

      This disease was a complete nightmare for me – it shook my entire life. The combination of prednisone and apriso for about 2 months has allowed me to eat pretty much whatever I want with no cramping, bleeding, or other intestinal side effects. Aside from the prednisone side effects, things are finally getting better! Research Apriso or Asacol – many UC patients agree that this is what worked best for them and got them into remission quickly. Good luck!

  • James Voll November 19, 2015, 6:32 pm

    I have been on prednisone for 8 months now tapering off from 40mg to 2mg today. Its was a wonder drug when I needed it most. With the tapering I do have moderate pain in the shoulders and hands which OTC ibuprofen helps with. Boy, I cannot wait to be off it altogether and be back to normal. This was to treat polymyalgia. The comments have helped me understand what the finish line will feel like!

  • irene November 22, 2015, 6:17 pm

    I have been on prednisone now for 16 years, and my GP wants me to withdraw due to osteoarthritis setting in. My experience so far with withdrawal symptoms are headaches, low energy and slight depression. I am suffering mentally, but I am determined to still keep going. It is going to take a least another 3 months before I am completely off them. Forgot to say, they were to treat polymyalgia.

  • Wallace November 22, 2015, 10:53 pm

    I have been on this for nearly three years due to inflammatory arthritis. Ten mg a day. I have now come off it in September after a slow reduction. I found I suffer from a bad temper and lack of patience. Since stopping it. I also suffer from a lung problem which means I regularly need antibiotics and steroids. Last week this happened and when I started the steroids my temper was a lot better however as I have reduced the dose my bad temper has come back I am on two mg a day then after two days one for two days then stop. Has anyone had this and can anyone advise what I can do please.

  • Marilyn November 23, 2015, 9:05 pm

    Today is my last day of methylprednisolone. Still feeling nausea and anxiety. Hopefully this is normal and will feel better in a few days. I pray for me and those that know what I’m referring too. It’s horrible.

  • Julia November 25, 2015, 1:15 pm

    Gosh I was feeling sorry for myself until I read these comments! I was put on 10 days 90 mgs 10 days 60 mgs 10 days 30 mgs. I already had withdrawal symptoms from 90 to 60 ( extremely high blood pressure, anxiety etc. I went to emergency, they just passed it off as a hypertensive crisis. So when I got down to 30 mgs I tapered 20, 10, 0 on the last few days. If I had read these comments I would have gone more slowly.

    Now 1 month later I still have panic attacks with high BP, generally feeling lousy etc and vow never to take it again. On the upside I was prescribed Pantoprazol 40 mgs taken at least half an hour before the prednisone to protect my stomach and that worked. I am 70 years old and live in Spain. It seems Spanish doctors have the same attitude and don’t warn about side effects. I had asked for the injections as I believe they cause less side effects, but was told they had to be saved for a more serious flare up.

    I have hyperthyroidism with eye inflammation. The prednisone did arrest the eye inflammation, but I am stuck with one eye protruding out and lower than the other and double vision and praying the inflammation doesn’t start up again. I have no idea what I will do if it does, I have been told I could go blind if the optic nerve gets affected.

  • Tammy November 29, 2015, 10:35 pm

    Was put on medrol for an allergic reaction to over the counter meds. After the 2nd day I had to get off of it. Shaking, very nausea, dizzy – still to this day, two weeks later, hot/cold flashes, very fatigue, anxiety, heart racing, eye pressure and head still feels weird. Anyone else experiencing dizziness after weeks?

    • Charlisa February 12, 2016, 8:27 pm

      Tammy, How are you feeling now? If you are feeling better, how long did it take? What treatments, if any, did you try for it? I am two weeks off 60 mg. for 5 days with no taper for a supposed sinus infection and TMJ. My heart races and I have anxiety, panic and my thoughts have become negative a lot of the time. Also jittery, shaky, foggy headed and slightly dizzy at moments. The racing heart and panic are the worst! Hopefully I will feel more human soon and I hope you are, too!

  • Debbie December 1, 2015, 11:25 pm

    My 90 year old mother was put on Prednisone two different times for Sciatica. I noticed her ankles and feet were starting to swell when she starting taking it. She is no longer taking it but, she is still having ankle and feet swelling. Has anyone else had this problem?

  • Karen December 7, 2015, 3:15 am

    I was in the hospital for nine days with a severe flare up of my ulcerative colitis. I was on up to 60 mg of prednisone which did nothing for me. I am now on remicade and in remission with many of the side effects of the prednisone discussed here. My worst problem is severe swelling from my waist to my feet most days especially towards evening. My GI Doctor says this is due to the prednisone, but I am beginning to wonder if it could be from the remicade. I have been done with the prednisone for three weeks. Can anyone help with this matter?

  • Renee December 10, 2015, 10:02 pm

    I started out on 80mg of Prednisone in January 2014 to address an autoimmune disease, VKH, which had attacked my retinas and left me blind. The Prednisone was like a miracle and brought back some of my vision. Long story short, I was up and down on the Prednisone in response to this crazy illness but now am finally down to 2.5mg and holding, with the help of two other immunosuppressant drugs.

    When I hit 5mg, the body aches kicked in like a freight train! The pain is CRAZY bad and doesn’t seem to be getting any better! I am also quite unsteady on my feet at times. I have been on Prednisone for nearly 2 years and from what I have read, it may take up to two years for my body to adjust and get back to normal! UGGGGHHHH!! Hang in there, everyone! I will do the same!

  • Renee December 10, 2015, 10:46 pm

    Kristen, I can totally relate to your symptoms of fatigue and loss of movement! After two years on mega doses of Prednisone, I am down to 2.5mg and holding. Most days, my lower body just refuses to move. It hurts so bad to stand up from a chair or the bed in the morning! I started to thin something else was really wrong with me…now that I know it is Prednisone withdrawal, I have joined a gym and am going three days a week!

    Once I get up and moving, it is ok…taking it slow and light to start! I am refusing to let this damned Prednisone get the best of me! I wish you, and all of you dealing with this crazy Prednisone withdrawal, all the best! God bless!

  • Rod Smith December 11, 2015, 1:23 am

    G’day. I was on 50mg every second day for over 2 years. After having heaps of chemo and stem cell transplant and then taking thalidomide and the prednisolone for 12 months I asked my doctor if I could have a break before continuing on indefinitely with the 50mg prednisolone. He said yes ‘but I might get a bit tired’. Wow what an understatement, I was on my own and just managed to get out of the chair to take the pills, that was after 5 days of cold turkey.

    Then at around the 27 month period I finally said enough. Doc told me to the schedule I should use is 2 weeks at 10mg, 2 weeks at 5mg and stop. Well that didn’t work for me, I had to drag it out for another month or so then stop. That was about 4 months ago. Now I am very week, every muscle hurts and gets injured easily (did my shoulder yesterday getting a jar of jam out of the cupboard), most of my joints hurt and everything I do hurts, even typing.

    Does anyone have comment or suggestion as to how to end this torture? After all the toxic crap I’ve had pumped in to me I have come to understand that this is the dark ages in cancer treatment. Cheers. -Rod (61 yo, multiple myeloma)

  • Catharine Tangiia December 12, 2015, 6:50 am

    I am a 60 year old Grandma who has been on and off prednisone since 2000 after experiencing my first bout of PMR… then being diagnosed with Sjogren’s syndrome… trigeminal neuralgia… and repeated bouts of Giant Cell Arteritis. I experienced many symptoms whilst tapering from all my past treatments with prednisone – but this time has been excruciating to say the least.

    This last episode, I have been on prednisone since May this year – starting at 60mg – once again for Giant Cell and PMR which had re-flared. I did the recommended reduction which went okay until I got down to 15 mg and then the pain hit me hard… also panic attacks… dizziness… muscle pain through my body… headaches… stomach problems… and really high blood pressure which has been untreatable as seem to be allergic to all the high blood pressure drugs I have been trialled on so far.

    Have tried all the natural things available, but I never know what is safe to take along with the prednisone… Does anybody have any tips for what I can safely take in conjunction with prednisone which will help these withdrawal symptoms and high blood pressure (which is really stressing me) along with all the other symptoms…. So good to read all your reports and stories and thank you so much for sharing these so that I know I am not alone in this adverse situation. I wish all the very best for all of you… :-)

  • BonnieWest December 12, 2015, 1:04 pm

    I went to rheum Dr. for pinched nerve due to RA. She started me on 3 prednisone for 2 days, then 2 prednisone for 2 days, then down to 1 pill for 2 days. Wow! The pinched nerve completely went away and the pain in my hands was gone as well. But, on the 3rd day of treatment, I began to break out in a rash that moved up my arm and on my face & forehead.

    I went to a pharmacy (we were out of town) and she said it was rare to have a rash from a drug that actually helped rashes but told me not to take the 4th day dose. She encouraged me to take Benadryl for the adverse rash/allergic reaction and after that, life has been difficult to say the least. I have had extreme pressure in my chest, palpitations, higher anxiety level than usual, blurred vision and the RA symptoms have returned to my hands at this time.

    I am surprised to find that I am having withdrawal from this drug and I was only on it for 3 days. It must be poison! Having anxiety/panic disorder any way didn’t help things and when I called the Dr. office to report this, all the nurse would say is go to an Urgent/Express Care or the ER. Oh well, did not go because I am praying that I will not have any more side effects from it. I would rather hurt than to feel this way!

    This blog has helped me to read that what I am experiencing is fairly normal. This is so difficult to deal with any time but especially hard during the holiday season. I just want to feel normal again. Hope this helps someone out there. God bless, Bonnie

  • Mike December 15, 2015, 1:29 am

    I have to say this was quite an experience. I developed a serious nerve condition in my right shoulder and lost use of my hand. I balked at taking the drug, but my doctor said I had no choice as I could have had permanent damage. I was on 60mg for 5 days then 40mg for three days and 20mg for three days. After day 3 I was whacky.

    I was barking at my family and coworkers. The pain in the arm was gone but so was my already limited sanity. I was also eating like I was going to the electric chair! I stopped three days ago and I feel like I could sleep for days. Wow what a whack!!

    • Mary April 20, 2016, 10:15 pm

      Mike, I know your story isn’t one to laugh about, but your comment about “eating like I was going to the electric chair” made me laugh. I can totally relate. My cravings and the way I was eating while on prednisone was much much worse than when I was pregnant. I think your description nails it. I hope you are feeling better.

  • Chris December 19, 2015, 3:57 am

    I started taking 60 mg per day 3 days ago, I’m 53 and my breasts are swelling and my testicles are shrinking :(. The doctor told me to take 60 mg for 7 days for poison oak. I plan to drop to 40 for the weekend and then 20 for a couple of days hopefully o will survive the side effects. When I was 17 I was on prednisone for months for ulcerative colitis and it literally killed me putting me in a coma for a few days. I can’t wait to get of of this hopefully my tits will return to normal size and my balls will feel a bit lower in the sack again in a few months. I’m also worried about all of the talk about anxiety and depression.

  • Jim December 19, 2015, 4:52 am

    Been on prednisone for a year off and on for herniated c4 disc and arm and hand numbness. Would work then after tapering off symptoms would come back in a few weeks. Now have done 2 epidural steroid injections which have had great results for the hand issue but what must be withdrawal is horrible. My entire body hurts. Feel like I am dying. It’s been 5 weeks since last injection. How long will this last?

  • andy December 20, 2015, 12:20 pm

    I was diagnosed a 3 day course of 30 mg for severe skin reaction to insect allergic reaction and had red raw rash all over my arms and lower legs. I read about some of the side effects of taking it and while it scared me, it also said that it works. It did. It cleared my skin up in days and for that it did the job, however, I also experienced many of the horrible shaky panic feelings described by almost everyone in this thread… It’s been 5 days since I stopped and just starting to feel a bit better now.

    If the reaction can be that severe and makes one feel panic induced attacks after a short dose, I feel for those on long-term doses of the drug as it really is not easy to deal with. Wish you all the best in coping. I managed to get through the worst with meditation and deep breathing exercises and just about avoided full-on panic attacks. I am amazed that Doctors prescribe this drug knowing the widespread negative effects reported here.

    I would not ever take it again under any circumstances as it’s unpleasant. Be strong – those of you that are worried about recovering. It will get better and positive thinking and being active help too. God bless.

  • Seun December 22, 2015, 5:42 pm

    I am a Nigerian and have been on prednisone for over 1 year now. I started out on 20mg and been on 5mg for the past 4 months+. Right now I am having my reactions including lightening of my skin and random sounds in my ears. Really wish to stop this drug, but wondering the best way to go about it.

  • jon e December 24, 2015, 3:31 am

    I took this drug 30 mg (10 mg three times a day) for 3 days to clear a severe skin allergy after an insect bite. To be fair it worked and cleared the red raw skin rashes within days. However I wasn’t warned by the doctor of the side affects and although I did read up on Google I wasn’t fully prepared for the feelings of anxiety and being dizzy and spaced out after the course finished.

    It’s been 8 days for me now since I stopped and have had several near panic attacks and my head feels foggy and heavy constantly. I have read these symptoms are normal and I have great sympathy with everyone on here who is suffering as a result of the side affects. It’s a quick fix for healthcare professionals without fully realizing the misery this drug gives as a side effect.

    I will never touch this drug again and be very careful about taking steroids again in the future. I have read it can be a few weeks to months before full recovery to feeling normal even after short doses like I had so no doubt I am not through the woods yet. It helps to know I am not alone and my heart goes out to everyone affected on this thread and be strong and you will get through it.

    The way I cope is with deep breathing and meditation for anxiety on you tube and this helps when I am feeling really jittery – which for some reason is worse in the mornings. To say this drug is poison is a bit strong, but I do feel people should be fully aware that it does more harm than good for many users. Take care.

  • Rich December 29, 2015, 4:11 pm

    Thanks to all who have shared. My Turn. I went to urgent care on a Sunday. Had a bad case of Poison Ivy/Oak was not reacting to any normal medication. Was prescribed 50MG Pred, one each for 5 days. So I though, how bad could it be. 5 days ended ended a week ago. No discussion about tapering off I thought only 5 days (short time) guess don’t need it?

    Well day 2 after I stopped taking the 50MG I started to get itchy day 3 was all over my back day 4 and 5 after stopped had itchy rash all over back and on my chest. day 6 starts to feel less intense, day 7 almost bearable. So I am hoping in a few more days my itchy body will quiet down. The prednisone worked on the poison Ivy/oak, but for a few days after the script I was wondering what was worse.

    Sorry to hear about the long term side effects, and really do appreciate the comments here, because I had no idea what was happening as I went through withdrawal. I’m hoping that I start to feel less itchy body each day – another week at the current rate may put me back to normal. Wishing all of you much success in backing out with the lease side effects. Again thank you for sharing, and all have a happier and Healthier 2016.

  • AB December 31, 2015, 7:40 am

    I too have been living the nightmare. I have been on prednisone now for over a year I’m down to 10 milligrams but am trying to taper by taking one pill every other day then I will go down to 7 or 5 milligrams. However, I am starting to feel the effects of missing a day. My joints are hurting extremely bad I’m very tired & weak. This is a terrible drug. I have pleaded with the doctor to take me off, but they want to put me on something else and I refuse because I am NOT going to go through this again. I have polymyositis, but I believe the effects of prednisone are worse than the muscle disease.

  • Stacie Cornwell January 2, 2016, 9:50 am

    I am steroid dependent and have been on high dose prednisone for 15 years for severe asthma. For me, prednisone has worked wonders for my breathing although I definitely have developed severe side effects (steroid-induced cataracts for one). Due to all of the insurance changes I had to find a new doctor mid 2015, and he flat out refused to prescribe me Prednisone. Before I began taking Prednisone on a daily basis I would get prescribed 7 day to two week courses of steroids and never did I experience ANY withdrawal symptoms of any kind after I was finished, never had any problems of any kind.

    Now, after 15 years of being on daily doses ranging from 40mg-80 mg, this new doctor – out of concern about the side effects of prednisone – abruptly ripped me off of them, knowing full well I had been on them for years and have already suffered almost every side effect there is. At this point, being able to breathe freely outweighed these side effects now, and 6 weeks after the abrupt cessation my breathing is horrible. I can’t walk up a flight of stairs without having to stop for several minutes to do my inhalers and catch my breath.

    I have ZERO energy, both my hair and skin has dried out HORRIBLY. I cannot sleep and when I DO, it’s insanely hard to wake up, and I’m hardly able to drag myself out of bed to even go to the bathroom. I’ve been so lifeless that it’s not unusual for me to lay in bed for 3-4 days without eating or drinking a drop of water. I just sleep this intense, hard sleep and have extremely intense dreams. In the past couple weeks now I have developed brutal full body pain, and my legs, neck, shoulders and arms are so stiff and painful, I can hardly walk, lift my arms, or bend.

    Pretty much ANY kind of movement brings excruciating pain. I am finally going to give up this fight and go to the hospital tomorrow. For me, I NEED steroids more than I don’t need them. I want to be able to breathe normally again, move without intense pain and agony, and function normally again. I cannot live like this. I have to be able to work in order to survive and now I am literally one step away from complete homelessness.

    I rarely eat because I am unable to work and make enough money to buy food. I’ve dropped 40 lbs in the 6 weeks I’ve been off the steroids, yet this does not seem to concern this doctor whatsoever! He firmly believes being on a steroid inhaler is more than enough and will keep any withdrawal symptoms at bay, which it clearly does NOT. Also since I have been off Prednisone, my carpal tunnel syndrome has all of a sudden so rapidly progressed that I no longer have a fully functioning hand.

    I’ve lost complete use of two of my fingers (they just hang on my hand) and my arm has started to atrophy. The pain from severe back injuries suffered YEARS ago has resurfaced with a vengeance, and when I am able to stand I can’t for very long because the pain is agonizing. My legs and shoulders are literally screaming in pain. There is no comfortable position to sit or lay in and that relieves it just a little; 1000 mg of Ibuprofen doesn’t touch it.

    So my complaint I guess is completely opposite of everybody else’s here. I WANT to go back on Prednisone… hopefully not on as high of doses I previously had been taking, but at least enough to restore my breathing halfway back to normal, and overall, get my life back. This has been a brutal 6 weeks. It’s like there is a full assault on my entire body and I have no control. My hopes at the hospital tomorrow is to get put back on steroids, and get a referral to another doctor who knows what they’re doing!!

  • Jacquelyn January 3, 2016, 3:07 pm

    I was on prednisone for 7 days. I have been off for 7 days. I have been extremely fatigued, shortness of breath, flu like symptoms, depression the past 2 days, crying, tightness in chest, and anxiety big time. I was an athlete in excellent health, working out 6 days a week before being diagnosed with an upper respiratory infection an put on prednisone. Thanks for this blog, I feel better knowing that it’s side effects. I have been extremely worried about my health. My question is how long will this madness last?

  • Leslie January 5, 2016, 10:42 pm

    It is now 5 weeks since I stopped Prednisone. May 2015 I had an aortic valve replacement followed by post operative pericarditis which required Prednisone to regulate my heart rate. From June to Dec. I had several courses of the medication with careful tapering each time. Finally I am off the Prednisone and relieved to hear my symtoms are common to many, with severe body aches, joint aches and fatigue. How much longer will this last?

  • cathryn January 8, 2016, 9:05 pm

    Hi, I was on Prednisone for 7 days due to an Anaphylactic shock incident. I’ve decided to cut myself off cold turkey because I’m having a lot of side effects and truthfully I don’t need it anymore because my allergy reaction is over. I was just curious if anyone else has done this and knows if I’m making a huge mistake because I feel.. well I feel like I’m going through the withdrawals and I’m also worried about my adrenal glands not functioning properly due to all the research! How long will this last and should I have just stopped taking them? I’m more curious if I’ll be ok cutting myself off after 7 days of this poison! Thanks for your support!

    • Terri February 4, 2016, 2:00 am

      Wish someone had answered you. I’m in the same situation. Except, on the day my ENT started me on a 12 day trial (I’m on day 6) of this evil drug, he cut out my Nexium. I’m in such severe pain, I’m curled up in the fetal position. I want to just stop the prednisone, but am afraid.

  • Pona January 9, 2016, 3:09 pm

    I took 20 mg daily for 3 months – I have colitis. I tapered off over 11 weeks (down .5 weekly). About 9 weeks in I noticed hair loss, dry skin and itching. Are these a part of tapering off prednisone? I have not seen it mentioned in any post. How long does this last?!

    • Ian Sharp July 1, 2016, 5:48 pm

      I look at all these people talking about withdrawal symptoms after being on prednisone two weeks. I was eight years, everything talked about withdrawing I have it times ten.

  • Jorie January 9, 2016, 6:39 pm

    I was on prednisone for 2 months to treat Bells Palsy related to my sarcoidosis (or, more likely, neurosarcoidosis). I took 60 mg for over 3 weeks, and was instructed to then taper by 10 mg per week until I hit 0. I never experienced negative side effects, even on the 60 mg, other than the occasional sense of hyperactivity or overstimulation (sensory overload). In fact, I think I felt almost euphoric on the medicine.

    At the time, I attributed those “good” feelings to healing, thinking that I must be feeling great because my internal inflammation was finally under control. In hindsight, I realize that it couldn’t have been only that. I had pretty severe withdrawal symptoms that my doctors definitely didn’t prepare me for or warn me about. I felt fine tapering down (all the way down to the 10 mg on the last week), but almost immediately hit withdrawal when I stopped taking it entirely.

    In reading this article, I wish my doctors had instructed me to taper more slowly, or brought me down from the 10 mg more gradually. I immediately felt nauseous, incredibly achy, irritable, very depressed, and anxious. I also immediately started packing on even more weight than I had gained while on the steroids, which I attribute to a hormonal imbalance. I’ve been off the steroids for 3 months now, and I continue to gain weight despite by best efforts to work out 3-4 times per week and eat consciously.

    In total, I have gained 15 pounds on my small 5’3″ frame, 10 of which came on during steroid withdrawal. I’m hopeful that my body will eventually reach homeostasis and the weight will start to come off. I still experience intense mood swings and anxiety, but those symptoms have certainly improved over the last 3 months. Have been using mindfulness meditation and regular exercise to try to combat the “blues.”

    Good luck out there to all who must endure long-term use and side effects associated with prednisone. Be patient with yourself (and your body), and try to keep in mind that in many cases it is the lesser of two evils.

  • Sarah January 11, 2016, 4:28 pm

    Hi! I’m currently taking 40 mg of prednisone daily to treat Ulcerative Colitis. Nearly all of the comments on this thread are pretty negative – I just wanted to leave some positive feedback for anyone who may be looking for insights on prednisone for UC. While all of the side effects listed above are pretty common and have resonated with me as well, prednisone in combination with apriso has relieved me heavily in just two months of treatment.

    In November, I was diagnosed with Pan UC (affecting entire colon) and had 26 deep ulcers. I was bleeding and losing chunks of tissue every time I went to the bathroom, with extreme abdominal pain and cramping. Over the next month, I was in and out of the ER for dehydration and eventually a severe ovarian cyst which set my treatment back by about a month. Many of the ER doctors prescribed medications that proved to be toxic to mix with the condition and prednisone/apriso.

    One in particular, that I will STRONGLY caution against, is Levsin (Hyoscyamine) tablets for cramping. My primary care doctor as well as two ER doctors all tried to put me on this despite the fact that it causes internal bleeding and worsens UC/Crohn’s symptoms. I finally agreed to try it and this, in addition to countless pain killers and anti-nausea meds, sent my UC out of control.

    After two weeks of hellish withdrawing and detoxing from two anti-nauseas, three pain killers, and Levsin, my cyst was gone and my treatment was back on track. Now it has been two weeks of taking 40 mg of prednisone and 4 apriso daily, and my UC is almost into remission. I wanted to share my story because from my research, it’s common for lots of miscellaneous meds to be prescribed and in the end, they do more harm than good. Despite the muscle weakness and insomnia (the worst of my prednisone side effects), prednisone and apriso have been complete lifesavers for me.

    I would definitely recommend that anyone suffering from UC talk to a GI specialist about this combination. Asacol is another option, similar to apriso. Today will be the first day of my tapering off of prednisone. I am doing 10 mg down per week until a final dose. After that, my treatment plan is to use prednisone during any future flare ups. Due to the extreme success of my treatment, I am hopeful that I won’t have any flare ups.

    I am also hopeful that anyone with UC may see this post and remain positive that it will get better. While this disease has caused me very much pain and suffering, finding an excellent GI (Dr. Rana Sokhi in Sheboygan, WI) and a treatment plan that works has nearly cured me. I am returning to my job as a chef next week Monday and can eat almost anything I want with no pain – I had pizza last night, something I thought I’d never eat again!

    Keep your chin up and work through the pain. Stay away from excess medications, especially any pain killers! While UC is not fatal, kidney and liver failure are! I will also recommend to anyone experiencing muscle pain to take magnesium supplements and do some leg lifts and light exercise. Epsom salts (magnesium salts) are excellent for baths, which help with the muscle pain greatly, too!

    It’s easy to want to stay in bed when you feel weak, but force yourself to go out and do at least one thing daily. I have been making small trips to the grocery store, Target just to look around, or a thrift store, etc. This is helping to restrengthen my legs and curing my anxiety and depression. Don’t let your autoimmune disorder beat you – stay active! Additionally, to anyone who may be experiencing anxiety or insomnia, my GI recommended that I take Benadryl once in a while to calm me down.

    This has been really helpful, and has helped me get rid of that “crawling out of my skin” feeling that prednisone can sometimes cause. That’s about all I’ve got for now – just wanted to add some positive feedback about prednisone! I’ll check back soon and update with my tapering process, although I’m hopeful that it will go well. To anyone who may have questions about UC or needs support or someone to talk to, I am available! Good luck to everyone out there, stay positive and things will get better!

  • Mary January 13, 2016, 9:04 pm

    Good and bad of Prednisone! I wish I had a $ for every time I had someone tell me I shouldn’t take Prednisone: “that drug”, “it is so bad for you”, “it will kill you”, “side effects are not worth the benefits”. I would be a Billionaire without winning the lottery. The bottom line is if you really need it it is worth taking. If I didn’t take it I would be dead.

    Would I take it for Poison Ivy? Absolutely NOT. That being said, that is only because I know and have lived though the side effects and they sucks and last a lot longer the Poison Ivy. I have a 25 year history of very high dose Prednisone use for my Asthma, Lupus and 6 years ago diagnosed RA. I mean high level… 160mg a day. YES 160MG A DAY- 40MG 4 TIMES A DAY! It took me years about 4 years to ween off, with help of Gamma Globin Transfusions once a month for 12 years.

    I gained over 175lbs on it(which I get off and than gain back the next time I go on it), fractured thoracic vertebrae, stretch marks and loose skin all over my body. I hear what you all are saying, believe me.I had to go on it again right after Thanksgiving because my Asthma and a lung infection lowered my lungs to 48% of total lung capacity and 17%of small airways. I am coming off a short 60mg a day for 2 week wean and it is sucking.

    I am so miserable. I am suffering from every and all of the withdrawal symptoms right now. The pain, fatigue and anxiety are killing me. Right now I am on 10mg every other day. All I can say is I am happy to still be alive (I think – withdrawal sucks)! If I didn’t go on it I know I won’t have made it this time. For those of you going through withdrawal know it will get better. It is worth all the pain your going through to get off it.

    And just know it is worth doing anything and everything to not go back on it. I went 6 years without a dose. I had swore I would never go on it again…but when it came to it I knew I didn’t have a choice. I have always said “If I ever go on it againI would never go off of it ” due to weening side effects. But I am and I will get through it just like you will too! I have to go to every other day in order for my adrenal glands to start up again.

    Prednisone is a very strong powerful drug it takes time for all organs, systems and glands to start working together again. But it will happen, that is the bright side – the dark side it doesn’t happen over night! Look on the positive side ad soon as you taper weight starts to go down and so does the rosy puffy checks! Happy HEALTHY New Year to All!

  • Sammy January 14, 2016, 6:07 pm

    So thankful I took some time to research residual side effects from Prednisone and found this site. Reading so many journey’s into the devastating drug has been helpful. I was diagnosed with reflex sympathetic dystrophy and told this drug was the only thing that would make a difference. Also told I would not get the swollen face or many of the side effects because it was a short duration therapy (10 days).

    Receiving the printed information from the druggist should have thrown a STOP sign up. When she mentioned not to take too close to bedtime as it’s like having a caffeine high I should have rejected the pills. Having issues in the past with atrial fibrillation and cautioned that caffeine would set it off again, I followed my doctors orders. The next morning my face was red and swollen, my eyes burned, I was nervous and hardly slept.

    Day two added cold sweats all night, shaking. Day 3 all of the above plus chills, loose bowels, aching, no energy and extreme nervousness. Day 4 all of the above plus exhausted and heart irregularities. This is the point I should have intervened, but trust my doctor, I must. Day 5 hoarse, cough, tight chest, nausea added to the list. Day 6 called the on-call doctor who agreed that prednisone was the best for my condition, but agreed to begin the tapering off.

    Heart issues increased. Day 7 all of the above only more so. Day 8 now down to 10mg with all of the above. In the evening I went to ER with an extremely overactive heart. EKG taken, blood work, ultra sound for blood clot, chest X-ray. All tests came back normal except the EKG. So, ER doc, is it the prednisone that’s doing all this? YES. My last day was two days ago when I experienced severe abdominal cramps, achy, tired and again heart irregularities. The ER doc wanted to change my heart med., but not thrilled with that either until I talk with my cardiologist.

    If, after withdrawal period is over, my heart is not back on track I may consider something different. Until then I’m staying with what worked before the prednisone. I’m one of those people who will encounter all the POSSIBLE side effects. Wish I had looked into this more before taking, but we, in America, trust our doctors – YES? Wonder if they have to try these drugs in med school before dispensing so freely to their patients.

  • Sam January 15, 2016, 4:48 am

    Broke my shoulder in traffic accident 6 mos ago. Recovery went well, but two months ago developed respiratory infection. Currently on my third course of prednisone: One 10 day taper, one five day blast, and now a 15 day taper. Pain in shoulder increased to almost unbearable. Weight gain of 12 pounds so far, blood pressure staying high (even though I’m on BP meds), and the worst part is that the respiratory infection is still not improving. I would just quit this drug, but pain gets worse when I stop. I’ll ride out this taper, but no more!

  • Tiffany January 16, 2016, 4:05 am

    Hello All! I decided to leave a comment after scrolling through and reading so many brave stories from each and every individual willing to open up and share their experience. I too am suffering from prednisone withdrawal symptoms after 9 YEARS on prednisone. Yes… Nine. Years. I emphasize that to show you… There IS hope on the other side.

    I am fighting my way through this withdrawal recovery but I am SO grateful to finally be off of prednisone completely and healing mind, body, and spirit. Diagnosed with 3 autoimmune diseases at age 21 (AI Hepatitis, Ulcerative Colitis, and PCOS). I was a scholarship athlete at the time and worked very hard to stay extremely healthy. So it was a shock to family, friends, and myself when After a severe bout of Mono (commune trigger for autoimmune disease). I was referred to liver specialists (due to astronomical liver enzymes) at University of Miami who confirmed autoimmune hep.

    The other two dig noses followed shortly after. Because I was so severely ill I ended up having to medically withdraw from school… losing my scholarship and everything I felt I had worked so hard for my entire life. I have been on these meds since diagnosis: prednisone (btw 50-2.5 mg), Ursodiol, Metformin ER, Azathioprine 150 mg (hopefully tapering that down next), and recently (8 months ago) added Spironolactone for PCOS symptoms. The only one of those I am not currently taking is Prednisone which I discontinued a week ago after tapering to 2.5 mgs for 6 months prior.

    I have experienced everything from severe anxiety/ depression to insomnia, heart palpitations, nausea, dizziness (at times severe), aching muscles / joints, extreme fatigue and headache at different points while on this drug and now in withdrawal. There are certain things that can help us with some of these symptoms such as drinking more water/upping salt, resting more, doing gentle exercise to stimulate lymph and circulation, as well as certain supplements that may help balance hormones.

    BUT I think that the biggest thing that helps is knowing that You’re NOT ALONE! You’re NOT crazy, or weak, or ANY LESS AMAZING just because you’re struggling through your withdrawal. My prayer is that anyone who reads this knows. You are not alone… you are deeply loved (by your Creator and by each and every person you strengthen with your courage). Here’s to all the Warriors out there We are SURVIVORS!

    I will be checking back to see if anyone has any questions at all… if there’s any way I can help you in your journey it’s a blessing to me. Fight On!

  • Tricia January 29, 2016, 1:03 am

    I’ve been reading some of your experiences coming off of Prednisone and it’s giving me hope and a lot of fear! I was diagnosed 2 1/2 years ago with Lupus and have been on a low dose (5mg) of Prednisone ever since. I know this medication is not good to be on long term, but it’s the only thing that has helped my pain.

    When I ask my doctor to help me get off of it, he puts me on something else, but leaves me on the prednisone. I have gained so much weight, I can’t take it anymore. I’m going to stop taking it, but I’m nervous. The pain I experience is unbearable at times. If there are any suggestions anyone may have I would greatly appreciate it!!

  • caroline January 29, 2016, 3:56 pm

    Hi, I am so glad I found this website as I am weaning off of steroids after being on them for a year and a half. I was at 60mg now at 5mg and the withdrawals are very hard. Until I saw this site I felt pretty alone with this. I feel for all of you. I have gained a lot of weight even with exercise and hope to take it off as it adds to the pain in my body.

    Being on steroids feels like you are in another world. Your body does not feel like it is your own due to strange pains and your emotions are beyond your control. Now at 5mg I am having the hardest time but again reading that all these symptoms are part of the weaning process gives me hope…

    I know steroids saved my life but they are so strong and difficult to get off. Meditation for stress and peace of mind and exercise when I can have helped so much. I will keep you in my prayers as I know you are suffering… hang in there, we will get through this.

  • Jennfer January 30, 2016, 1:48 pm

    Wow reading everyone’s story’s has made me feel even worse about my situation! I have been taking 10 mg of prednisone for five years for Crohn’s disease and this is the first time I have successfully gotten off this drug. I am very fearful about the damage I have done to my body.

  • Patti February 1, 2016, 3:23 pm

    I was diagnosed with Cryptogentic Organizational pneumonia 7 months ago. Started on 160mg for 30 days, then 40mg for 30 days, then 20mg 30 days, then 10mg then 5m I feel like my lung specialist doesn’t understand the withdrawal part of coming off of prednisone. The fatigue is real, fear of getting sick again is real. I went to U of M for a second opinion asking what caused this and how to prevent it from happening again. There are no answers and no one knows. The crying because of my body trying to restore itself is tough.

  • Shelle February 1, 2016, 8:35 pm

    I have MS, Lymphocytic Colitis, & I’m Hypothyroid with Hashimoto’s thyroid disease. I have a bulging disc in my spine. My DO prescribed 40 mgs. of Prednisone for 3 days, and 20 mgs. for 4 days. My last day was Saturday, and today is Monday. Needless to say, I am miserable. I have a headache, diarrhea, low blood sugar, nausea.

    I’ve been prescribed Prednisone before, by a neurologist at Cleveland Clinic. She tapered the dose much more slowly. She had prescribed Solu Medrol Infusions for 3 days, and then prescribed oral Prednisone. I didn’t feel this way. I will have to explain to my DO how to taper Prednisone for me.

  • Bobbi February 2, 2016, 4:49 pm

    I was diagnosed with BOOP in May of 2015. I was prescribed 50 mg of prednisone for 1 month, decreasing the dose by 10 mg each month. I was done taking prednisone in October of 2015. It is now February 2016, and I have been experiencing joint pain and muscle soreness for several months. My knees, ankles, elbows and neck hurt.

    It takes me about 30 seconds to get going once I get up from a sitting position. I have noticed that if I keep moving, it feels better. I also gained about 30 lbs. while on the drug and have still not lost a pound. My belly is still swollen and I’m just so frustrated that this is all hanging on so long.

    I honestly thought when I was done taking it, that the pounds would start falling off, but it’s just not happening, despite the decrease in appetite. I’m just hoping this will all start subsiding soon. I guess I was wondering if anyone out there, who has been on a similar dosage for the same period of time, has had these symptoms, and for how long.

  • Nate February 3, 2016, 5:46 pm

    I was prescribed 50mg for 5 days last week. I had gone to the ER after a night of severe dizziness and vertigo. The ER doctor diagnosed me with labyrinthritis of the ear. I took it for 3 days and decided to stop because of severe aggression and anxiety. It has been 3 days since my last dose and I had another severe dizzy spell this morning and still feel off balance.

    My stomach was nauseous all night and I barely got any sleep. I am very depressed and have a very sore throat and ears. I went to urgent care this morning and they found no infection. Could this be from the prednisone after only 3 days? I know I have a very sensitive system.

  • FRED February 7, 2016, 2:24 pm

    First to Nate re: Dizziness and Vertigo. I have had vertigo on and off for about 20 years, and was prescribed Anti-Vert years ago (luckily not Prednisone for vertigo). Eventually the dizziness went away on its own. I later came upon a newspaper article that described how to take control of vertigo. Please Google “Epley Procedure for Vertigo”. This was developed by Dr. John Epley, a Portland, Oregon physician and is not a gimmick. It is a simple head-turning neck exercise that works for 95% of the people experiencing vertigo – and this is without medicine.

    Over my past 20 years, I have explained this procedure to many friends who experienced vertigo, and 90% of the time, it has worked perfectly. I printed the exercise and take it with me any time I am out of town. It has never failed me, and all without seeing a doctor or taking any medicine. The exercise works on the inner ear and restores balance fairly quickly and easily. It worked for me and will probably work for you. Since there is no medicine required, it is certainly worth a try.

    Back to Prednisone withdrawal. I have had PMR for about a year, which was diagnosed in July of 2015. My Rheumatologist prescribed 15 Mg. of Prenisone daily (10 Mg in AM and 5 Mg with dinner at night). The extreme pain of the PMR was relieved at once. I then started on a gradual reduction plan, getting to 12.5 MG in about a month and then continuing to reduce the dosage steadily at the rate of about 1 Mg drop each week.

    When I dropped the dosage from 10 to 9 Mg I sensed some pain. The next week, I dropped from 9 Mg to 8 Mg and had a minor flare (much pain and other symptoms). The doctor had me go back to 10 Mg for about a week and then to 9 MG for about a month (8 Mg in AM and 1 Mg with evening dinner). About 6 weeks ago I started a very slow reduction plan: 9 Mg 5 days a week and 8.5 Mg 2 days a week, followed by 9 Mg 3 days a week and 8.5 Mg 4 days a week, then 9.0 Mg 1 day a week and 8.5 Mg 6 days a week. (3 weeks to drop 1/2 Mg).

    Last week I reached the 8 MG 6 days a week level and this week I will be starting at 2 days a week at 7.5 Mg and 5 days at 8.0 Mg. So far, so good. However anything is possible, so if I have a flare and have to go back to a higher dose, I will do so slowly, but later again resume the plan. If all goes well (I am at 8 Mg at present), it will take 3 weeks for every 1/2 Mg reduction, or 48 weeks to get from 8 Mg to Zero Mg.

    Undoubtedly there will be some glitches. I talked to the doctor’s nurse who approved my reduction plan, but she mentioned that I may end up having to stay on a low dose (5 Mg or less) indefinitely. In the meantime, I am taking 3000 Units of Vitamin D3 and 600 Mg of Calcium daily to keep my bones sturdy, and seeing my Rheumatologist every 2 months for blood testing and a checkup. Prednisone can add to a person’s weight, so I am really watching my carbs (no bread or potatoes, etc.), no candy or sweet rolls, etc.

    In spite of the possibility of weight gain, I have dropped about 8 pounds (from 197 to 189) since starting on Prednisone. My glucose level was up to 115-120, but since watching my diet and losing weight, it has dropped to about 105 average. My blood pressure initially increased with the Prednisone, but since losing the 8 pounds, it has also dropped to about 135 /75 (I am age 84 and never smoked and have only one drink with dinner on rare occasion.

    I am semi-retired and still working 3 days a week, helping our son run the family business. Staying active and not feeling sorry for yourself is important. I am an antique car collector and spend much of my spare time tinkering with old cars and going to car shows as time permits. Our son and I have a car museum in Canfield, Ohio. (www.tipcars.us). I have never been in the hospital, and am working hard to stabilize the PMR and also to reduce the Prednisone gradually and slowly).

    Watching my diet has not been easy, as I love cinnamon rolls and candy, but after about 2 weeks of abstaining, for some reason the desire for sweets and carbs seems to subside. My advice to anyone trying to reduce the dosage of Prednisone is to do so very slowly, no matter what the doctor days. Watch your diet and keep a chart of your dosage, your weight, blood pressure, glucose level, etc. This is a serious issue and if handled as such, a reduction plan will be successful. Fred

  • Martyn February 8, 2016, 8:00 pm

    I had a liver transplant three months ago, so taking Prednisolone for that length of time afterwards is a normal part of treatment. I was on 20 mg and every few weeks tapered it down by 5 mg. I flattened the taper even more toward the end by halving the 5 mg tablets. I finished two weeks ago.

    I have most of the withdrawal symptoms in the above list, but they are all minor except for monumental fatigue, brain fog, and a bit of depression. Some days are worse than others and I’m looking forward to my adrenal glands getting back to normal. Whilst on Prednisolone it felt okay. In fact I had a peculiar experience in hospital when they thought I might be rejecting the new organ.

    I had an emergency 100 mg IV drip of methylprednisolone and managed to sleep for the first time in five days. The dreams that came to me were incredible, all in that same rich technicolor which saturates memories of a happy childhood. I woke up feeling like a demigod. Alas, this effect only lasted a day. Now I am off the stuff I realize that I have been buoyed up by it for three months and it is only now that the real recovery from my transplant begins.

    • Pauline March 20, 2016, 10:20 pm

      Hi Martyn, I saw your post on the Internet about Prednisone and your liver transplant. I got a kidney transplant the first of February. I came to this website looking for answers as to my side effects. It’s helped make sense of them. :) I was wondering. What did you mean by, “now that the real recovery from the transplant begins”? I’m so ready to get past the recovery. Sincerely, Pauline :)

  • Ellie February 9, 2016, 6:41 am

    I was prescribed prednisone for a viral rash that suddenly appeared over my entire body. It looked like if someone whipped me intensely. The doctor I saw was at the Texas med clinic and she prescribed me 40mg for 5 days. It really helped with the itch but by the 3rd day of taking this devil of a drug, I was very depressed. On the 2nd day of taking this pill, I did feel my body feeling really weird it was only by the 3rd day is when I would cry for no reason. I became so anxious, depressed, and very irritable. I will never take this drug ever again. It’s like a roller-coaster of emotions inside this little pill. What the doctors don’t tell you. Hmph -_-

  • Trisha February 13, 2016, 1:49 pm

    I’ve been on steroids for 6 weeks due to a herniated disc in my back. The lowest dose was 2 mg once a day and my Neuro said I could stop anytime. Wrong! Severe withdrawals: body aches, Nausea, weakness, fatigue. The pharmacist said he should have tapered me off slower to once every other day, then once every three days because I had been on it for so long.

    It’s been a week and I am slowly feeling better. Still have the muscle soreness and moon face, but I haven’t had to take ibuprofen in a day. What I wanted to tell everybody who’s been pre cubed steroids for poison ivy/oak, try this first! I use OTC Calagel. It’s beside the calamine lotions , but it’s a clear gel. I used to get poison ivy about three times a summer. And every time prescribed prednisone.

    Evil stuff! I tried the Calagel. Amazing!!! Stops the itch and redness within minutes!! Clears up within days. Love this stuff, no more co-pays or steroids. They invented this for the troops in the Vietnam war, because of all the sumac the encountered. Genius stuff! Please try this before going to the doctor. I haven’t been to doctor for poison ivy in 6 years now. And yes, I still come in contact every summer.

  • Nancy February 13, 2016, 8:11 pm

    I am simply amazed that we were all were treated with this poison! I was prescribe this for acute bronchitis so. I could breath. Within a day or two I wanted to climb out of my skin! Every side effect, anxiety, nausea, diarrhea, rash, fatigue, loss of appetite, insomnia, depression,and more. My god! I thought I was sick before I went to the doctors, but now I was dying!

    I could not been make myself finish the last day of the Prednisone, I quit cold turkey and it has been 5 days of hell, inching my way back to normalcy. Why in the world is this being prescribed?! I will NEVER in my life take this drug again. Wishing you all health and happiness.

    • James February 20, 2016, 12:48 am

      Was prescribed prednisone for back pain, 40 mg 3 days, 30 mg 3 days and so on for 12 days. By the sixth day I was in ER with chest pain cause by GI problems. After finding out it wasn’t heart related I persevered. Three days later I started to turn into a basket case. Anxiety, and mood swings I wasn’t in any way able to control.

      Missed the second pill that evening and called my doctor the next day. Surprise surprise she told me I was intolerant! Three days later I have not taken any more of this stuff. I’m tired, still have Gas and GI chest pain. My legs and feet are burning and I have zero energy.

      I would hope it improves, but would like to thank all of the open and honest people on this forum, I now know that I have to tough it out. May god bless you all and may he give you good health and peace. Thank you…

      • Loretta March 30, 2016, 12:21 am

        James, I can relate to the chest pain omgosh!!! I now know to take Tums whenever I am on steroids. I am a pro with steroids unfortunately. The mood swings, unnatural energy, non satisfied appetite, weight gain, then EXHAUSTION to top it off when tapering. I would never recommend just stopping it. I strongly recommend a new doctor to take care of you. This is not a medication to mess with OK?

  • JL February 14, 2016, 1:27 am

    These comments have been very helpful. Unless you’ve been through it, you wouldn’t understand. I have been on and off prednisone (mostly on) for over 1 year and am tapering (again!). Down to 5 mg and have many of the symptoms described in previous posts. Keeping my fingers crossed!

  • Linda February 15, 2016, 7:27 pm

    I have taken prednisone for 19 years and find now it has caused diabetes and I can not get a handle on the blood sugar. I asked my transplant surgeon if I could go off my 5 mg dose of prednisone. He has me taking the 5 every other day for 2 weeks then stop. I’m a little worried about it.

    But so far have only had some minor aches in joints. My last pill is in 2 days. I read a lot of the comments and did not see anyone taking prednisone this long or even as an anti rejection drug for a kidney transplant so I do not know what I might expect. I will try to comment next week.

  • Doreen February 15, 2016, 11:47 pm

    This has been a very helpful article as well as all of your comments. My teenaged daughter recently tapered off Prednisone that she was on at 20-30 mg for over a year for ulcerative colitis. She couldn’t wait to finally stop this medication due to increased appetite and weight gain, steroid acne, and gastric reflux.

    She has had longer-standing troubles with anxiety and depression, but has been making steady progress in gaining control over difficult emotions. In the last few weeks, however, her depression has worsened and she is having sporadic crying fits and thoughts of suicide. This regression seemed to come out of nowhere (certainly some teenage issues cause her stress, but they haven’t seemed proportionate to the severity of her depression) when I started thinking about the gradual tapering of steroid use.

    I thought mood problems would be more likely when she began steroids, and never thought about this being a potential withdrawal issue. It makes sense now thinking about her adrenal glands need to get used to functioning on their own without the daily Prednisone that she took for well over a year. Telling her about this article seemed to help a bit so that she can attribute her symptoms to a physiological source and hope for relief as time passes.

  • Jonathan February 16, 2016, 12:01 am

    I’ve been on and off presnisone for 3 years now. The highest I was on was 80mg a day. I maintained on 40mg a day for quite awhile. When I say on and off, I’ve been on them more than I’ve been off of them. I take it for flare ups with ulcerative colitis. It’s the only medication that will get it under control once in a flare. I just stopped again after starting back on it in December.

    Started at 40mg and then slowly tapered down from there. Off presnisone for a week now and I have constant headaches and joint aches so bad that I can barely move some days. Hope I don’t have to go back on it anytime soon. Hopefully the dose of Imuran that I’m on will keep things in check. I never experiences bad withdrawal on medrol dose packs, only after high doses over past 3 years.

  • Bryan February 19, 2016, 8:29 pm

    I was on a high dosage for 5 months and did a slow taper. I will absolutely not take prednisone again unless my life absolutely depends on it and there are no alternatives. It’s a horrid drug that literally destroys your body. On it I gained 20 lbs my face swelled up to twice its size (almost back to normal after 3 months off it).

    I had heart palpitations as well as incredibly terrible cramps and weakness in my muscles. I also was incredibly moody and thank god my spouse is still with me. My bones were brittle and I have a cracked shin because of it which is still healing 3 months later. I’ve lost some of the weight but have a long road to go. Got my strength back and some of my sanity.

    If your doctor ever recommends prednisone for something non life threatening run away!!!! Worst drug ever. Oh and they didn’t tell me before I started it that you can’t just stop that you have to do a very slow taper. You become dependent on this drug after a few weeks. If you suddenly stop your body won’t produce enough cortisol and you can die. So take a tip from me and avoid this drug like the plague.

  • Linda February 21, 2016, 5:38 pm

    Update: The joint pain is more severe, the worst is my hands, feet, neck, and elbows. I have some stomach pain and a headache almost continuously. My eyes seem a little fuzzy and my brain seems slow. I am tired and nap readily. I have woken at night with heartburn last 3 nights. This is not fun but so far I have kept up activity level. I still am hopeful that I may be a lucky one and get over this quickly.

  • Heather February 22, 2016, 5:00 am

    I’m on my second day of 40mg prednisone for an asthma flare. The plan is 3 days 4omg, 3 days 30 mg 3 days 20 mg 3 days 10 mg, then stop. This is the third time I’ve had one of these tapered programs. The first two times, the medicine worked extremely well and I didn’t have any problems with withdrawals.

    It was really a life-saver for bad asthma. But I’m much older now and have RA, CKD, and other problems. The first day was yesterday – already rough, with feeling overheated and sweaty, racing heart. Today is better, but I’m probably building up a tolerance, however still weak and tired. This is definitely not a drug to take for something minor like poison oak or hives; there are other drugs for that.

    But for asthma attacks, it really is helpful if the usual asthma meds are not working, since even the awful side effects are better than suffocating from the lungs not working. I am worried about possibly experiencing the withdrawals this time. I hope you all are feeling better, and thanks for your blog posts; I really appreciate your sharing.

  • Hannah February 24, 2016, 11:20 pm

    Have been on prednisone for 2 months (mostly 12.5 – 15 mg, reducing slowly) for PMR with so far no negative symptoms and almost complete relief of numbing pain. However, I have researched every possible nutritional support for inflammation and adrenals. I take a lot of supplements and they make all the difference. I also eat a very careful diet, plant based, with enough protein, no sugar or gluten.

    There are many things you can do so you can be healthy in spite of drug, and during withdrawal. Do your research, there is a LOT out there – try things. Proteolytic enzymes (Neprinol), curcumin, blue green algae, sprouts powders, probiotics, mangosteen, boswellia, plus the adrenal supports – there are many – are the ones that help me most.

  • g February 26, 2016, 5:24 pm

    I recently had an asthma attack and I was given prednisone 10mg, take 3 in the morning and another 3 at before I go to bed for the next four days. I wasn’t awared of any of the side effects this pill had. I’m a junior in high school and it was very difficult for me to wake up in the morning. I won’t get enough sleep or get too much.

    My doctor didn’t give me any warning signs. I’ve stopped taking them two days ago, since than I haven’t been able to sleep, getting headaches, blurry vision, and muscle pain. Having those side effects, it’s very difficult to sit down in a classroom for six hours.

  • Linda February 28, 2016, 10:58 pm

    Update: I took my last prednisone 12 days ago. My joint pain is worse at times. My headache continues intermittently. I rest a lot from fatigue but when I take my pain medication I feel quite well except for my thumbs and wrists. New withdrawal (or not) symptoms acne, swollen gums (hyperplasia),and loss of appetite. I’m getting tired of feeling like this and my heart goes out to all of the people who have written with their stories.

  • Mary March 2, 2016, 3:37 pm

    Wow, amazing stories of great bravery and problems. I’m so grateful I found this site. I’m 61, and over my lifetime I’ve had prednisone a few times and really liked it just fine. I have fibromyalgia. I was put on prednisone Jan. 14th to treat a bone spur that flared up because in my efforts to be “natural” I quit taking Celebrex for a few days. (A few months earlier I took prednisone for an inflamed eye and, again, that was a fine experience.)

    This time the prednisone has been very bad for me. I was only on for 10 days, 30 tablets of 10 mg with a good taper prescribed. It’s been almost 7 weeks since I stopped taking it. Insomnia, extreme nervousness, no appetite, sad, depressed, confused. My dr. put me on Lexapro to combat these symptoms, which is a reasonable course of action because I’ve been on and off anti-depressants for most of my life. The Lexapro has helped the depression, but so far it’s not helping the anxiety and insomnia much. It’s gotten better, but here I am, almost 7 weeks since I stopped and still half crazy.

    It helps to hear your stories, thank you. It’s lonely, these symptoms. I don’t really tell anybody because after I told a couple of people I could tell that they just can’t handle it, don’t want to hear it. Or they sympathize, but then because it’s “only” a reaction to a drug, they seem to forget about it. I don’t blame them. I’m just saying this whole thing is HARD.

    I also take medical marijuana, which has helped some with these new symptoms but not as much as I would have hoped. I use Indica-dominant, which is the kind that makes you relaxed and sleepy, but even that has not helped. I usually use it at night before bed so that I’m not “stoned” during the day, but today I’m thinking I might just get stoned all day and see if that helps, since I have no other plans.

    This has truly been a very difficult and bewildering 7 weeks. I’m better than I was, so I have high hopes that I will soon be back to my own version of normal. Good luck to all of you! A follow up… My doctor prescribed Klonopin for the anxiety, but it is so highly addictive that she wants to be taper off of it, too, so I am. It helped, it helped a lot. But getting off of it causes it’s own set of problems, like feeling crazy and muscle aches. Can’t win!

  • Hasi Grover March 5, 2016, 4:35 am

    My husband had asthma when he was a teenager. Someone recommended him prednisone and he started taking 10 mg of this medicine everyday. He felt better and never stopped this medicine since then. Today he is 65 years old. He had some backbone issues and when we consulted the doc for medicines, we told Doc about steroids.

    He said that too much prednisone had damaged his bones and he should gradually stop taking it. So he decided to take half a tablet (2.5mg) daily. But after two days he stopped taking even half the tablet. Since we were both unaware of the withdrawal side effects, we got shocked when he started showing them up.

    After consulting with the doc, we knew about it. He had to go through blood check to find out whether his body is able to produce it or not and the result says it is showing 0.8. So now whether he should start taking prednisone again for some period and then gradually slow down, is the big question. We will be seeing the specialist tomorrow. Any comment or advice is welcome.

  • Hasi Grover March 5, 2016, 4:46 am

    My husband had asthma when he was a teenager. Someone recommended him prednisone and he started taking 10 mg of this medicine everyday. He felt better and never stopped this medicine since then. Today he is 65 years old. He had some backbone issues and when we consulted the doc for medicines, we told Doc about steroids.

    He said that too much prednisone had damaged his bones and he should gradually stop taking it. So he decided to take half a tablet (2.5mg) daily. But after two days he stopped taking even half the tablet. Since we were both unaware of the withdrawal side effects, we got shocked when they started showing up.

    After consulting with the doc, we knew about it. He had to go through a blood check to find out whether his body is able to produce it or not and the result says it is showing 0.8. So now whether he should start taking prednisone again for some time and stop gradually, is the big question. Any comment or advice is appreciated.

  • Susan March 8, 2016, 6:47 pm

    A heartfelt THANK YOU to everyone who has posted here. I was afraid there was something seriously wrong with me because the Prednisone withdrawal couldn’t be causing all these problems 2 months after I quit, could it? Your posts have helped give me clarity on what’s going on. I was given Cortisone and Prednisone for a rash that sparked an immune reaction in December/January. (It was misdiagnosed as cellulitis and I was hospitalized and put on IVs).

    When I was discharged, I was prescribed 40 MG/day. On the first day I ended up in the ER thinking I was having a heart attack. My heart was fine but racing like crazy from the drug. They reduced it to 30 MG/day for a week; then 20 MG/day for the second week; then 10 MG/day for the third week and finally 10 MG every other day for a week. My last dose was on January 20.

    It’s March 8 and I’m still messed up from it. Deep exhaustion, moods, aches, pains, stiffness, eye problems. A mind and body that don’t feel like they’re my own. The doctor told me the drug would be out of my system in 48 hours and so would the symptoms. Hah! I will be fasting on juice and some days on water – my go-to method to help the body heal – and hope that will accelerate the recovery.

    By the way if you are reading this and have arthritis, CFS or another auto-immune disease, I know from personal experience and direct reports from friends that the diet on drfuhrman works. Sometimes quickly and sometimes slowly, but it works. I have no affiliation, just sharing.

  • shannon March 13, 2016, 1:38 am

    I was given prednisone for unexplained facial rashes. I loved it, I didn’t get the side effects others had. I felt and looked great… I worked 2 jobs and FT uni, eating wasn’t a priority, and was mainly eggs. Until I met my now fiancé. From there I started eating regular, breakfast lunch dinner and quit 1 of my jobs.

    That’s when I started the weight gain, change in skin/hair health and shape of face change. I was off and on it from there but the rash wouldn’t let up. I’ve since found out what I’m allergic too after converting from a carnivore to a vegan, changing life choices, stopping sugar, tomatoes, strawberries and anything else I could think of… but I was determined I wasn’t going back on steroids. I went through hell and still am, the all over rash that bled for 2 wks, the exhaustion, fevers, joint pains, body image hatred, lack of enthusiasm for life and now the emotional I hate my life break down in tears.

    Firstly I have a great life, a man that loves me and is caring for me through all this, kids who praise the ground I walk on, HDs at uni and I’m winning awards, I’m 41 as of yesterday and look 31. I will get through this, we all will. Good has come from this… I have discovered what I’m allergic to. As I haven’t been able to mentally or physically handle leaving my bed my hygiene levels drastically depleted along with my beauty regime.

    Once the rash cleared it truly cleared… going over my diary of what the hell is happening to me I discovered the issue. Dates matched, only thing now missing from my life…As it turns out I’m allergic to my hair dye, the PPD and res stuff is highly toxic to me. Reading this site has given me the push within myself to get up and stop letting this drug take anymore control of me… It’ll be pure will power but today’s a new day.

  • Nichole March 19, 2016, 4:33 am

    I was prescribed prednisone for pain and inflammation in my back between my shoulder blades. The day after I stopped taking it my neck and shoulder muscles started feeling really tight and then I was in so much pain I could barely move. I had a squeezing pain in my chest and neck. My face, neck, hands, and feet were all incredibly swollen to the point where swallowing was difficult.

    I went back to my doctor and he told me there was no chance the prednisone could have caused it. He wasn’t concerned at all with any of it. He told me he didn’t know what was causing it and wrote me a prescription for a muscle relaxer and practically pushed me out the door. I was also having really bad anxiety because it hurt to breathe and move and I was worried about how swollen I was. After reading a lot of these comments, I’m pretty sure it was the prednisone.

  • Kristina March 21, 2016, 2:54 pm

    I am currently experiencing horrible withdrawals from Prednisone. I was prescribed Prednisone for Minimal Change Disease and started with 80mg. Within a few weeks I gained 23 lbs and had a bloated stomach that made me look and as I was pregnant. Since the Prednisone only temporarily helped with my disease my doctor decided to taper me down to try a different treatment option.

    I went to 60 mg every other day thereafter for about 1 month, then 40 mg ever other day for about 3 weeks, then 20 mg every other day for 2 wks, now I am taking 10 mg every other day and I feel like hell. My stomach is still bloated, but now I am experiencing intense stomach pain, muscle aches and anxiety. I am switching to 10mg twice a week by the end of this week and cannot wait to be off this awful drug.

    I am currently furious that all of this was never really explained to me, and to top it off the success rate for my condition, for treatment with Prednisone is only 60%. But the drug is cheap, so my insurance – I guess preferred it to another one that’s more expensive. I hope that other people will read before start taking this drug – because there are always better options that may be more expense to the insurance company, but they are available upon request – one just have to know about them.

  • Nick Peters March 21, 2016, 4:45 pm

    My wife was given a long term course of Prednisolone for PMR – she is now in the process of tapering off – but is going through hell. No energy, unable to undertake simple household chores, those she does shatter her, she’s depressed (she is normally a lively and happy person) and almost sleeps the clock around. Surely there must be a safer drug/steroid than Prednisolone with fewer side effects – the list seems endless.

    I also was put on a 10 day course of 30mg Prednisolone daily – when the course ended I went cold turkey. I felt so ill I thought I was on the way out! Violent stomach cramps, dizzy (fell twice), severe headaches and hand shaking, hot and cold flushes, severe sweating. My GP (not the same one that gave me the steroids – but it was on my notes) reckoned it was Gastroenteritis, err… but the symptoms match Prednisolone withdrawal to the letter, but I was told there would be no withdrawal after only a 10 day course – such utter rubbish.

    It has taken 6 weeks to get back to almost normal, I still have a little way to go. Is this drug used due to it being quite cheap? To my mind it is a poison and should be banned.

    • LORETTA LOPEZ March 25, 2016, 10:00 pm

      I agree. I have never been so miserable in my life. I can’t eat anything without my stomach getting upset.

  • Michele March 22, 2016, 1:58 am

    I have been off the prednisone since, Friday March 18th. I have noticed red blotches, that I don’t know if it’s a rash or just blotches. My body is starting to itch, I don’t know if it’s in my head or not.

  • LORETTA LOPEZ March 23, 2016, 6:22 pm

    I started taking prednisone at the end of October 2015 near Halloween due to a wound that would not heal. They started me out at 100 mg per day and the wound care doctors were surprised to hear I was on such a high dosage. Well since I first started taking these pills I had the worst abdominal pains ever.

    My body finally adjusted to them but after taking them for so long and finally being able to taper off these pills those really bad abdominal pains are back. I can’t eat anything without getting sick to my stomach. While I was on the prednisone I gained 5 pounds and since I stopped taking them I have lost those 5 pounds plus have lost 5 more pounds.

    I shouldn’t be complaining because I really need to lose weight but I am miserable. If anyone has any advice as to what medication is the best to take for this pain please help.

  • Adriana Navarro March 25, 2016, 4:17 pm

    Hello All- I took pred. for 12 days to treat a severe migraine headache. I tapered down from 60mg daily to 10mg. in 12 days. My last dose was 3/18/16 and that very day I woke up with bilateral ankle pain that is alleviated with ibuprofen. I am now (1 week later) still experiencing body aches and anxiety. I have reported my symptoms to my PMD and prescribing MD. and they don’t think it is related to post pred. therapy? I am lost for words and hoping to find an answer. I just want to feel like my self again. I hope someone has a comment or has had the same symptoms. Thank you!

    • David April 2, 2016, 1:37 pm

      I am almost 1 month since my last dose and have had pain start within the last few days. In my case, it’s my hands, hips, and lower back. I tapered after being on it for 14 years.

  • Sofia March 29, 2016, 1:46 am

    I was on prednisone for 2 weeks, and weaned off slowly on the last 4 days. Now I’m having nightmares nearly every night, and some anxiety & shakiness during the day. It’s been 10 days since I finished. My painful gout finally left, but the rest of these symptoms are horrendous. Hopefully, I’ll get back to normal soon. Tears and depression are not pleasant side effects.

  • Dot March 29, 2016, 11:03 pm

    I was on prednisone for 3 years for PMR -not a large dosage. Started on 20mg and very soon when to 15 mg for about the first year. 2nd year down to around 10mg. 3rd year just wanted to get off the drugs so tapered very slowly up and down until I was on 1 mg for about 1-2 months, heaps on soreness returned but I was committed to get off it.

    Finally the day came, no more tablets – the soreness in my muscles returned big time even just from taking 1 mg a day – WT. Its been 8 weeks now and I still need to take pain killers regularly. But good news is – it is getting better every day. Hang in there – it will be worth it to be off this crappy medication.

  • Hannah March 31, 2016, 5:56 pm

    I was placed on it to respond to a severe allergic reaction I had to Zyrtec. I did not experience issues while taking the steroid, but I am currently in my first week off and I’m experiencing several of these symptoms. Sunday was my last dose, Monday I felt fine. Tuesday I woke up ache and tired. I did normal weight lifting and noticed immediate muscle soreness.

    Later in the day I had to jog a short distance on pavement and my knees hurt worse than I’ve ever experienced (and I’m running about 8 miles per week). The soreness and fatigue continued into Wednesday. I left work early due to how horrible I felt, I had a fever, joint pain, and was fatigued. I did find some relief from massage, and extra rest.

    Today I don’t have a fever, and my aches are lessened. I’m still fatigued, and ache but at least my joints hurt less. I’m suppose to run a 10K on Saturday, and I honestly don’t know if I should. I just want to feel well again!

  • Linda April 1, 2016, 2:29 pm

    Went on a lovely cruise but still felt withdrawal symptoms from Prednisone. Now it seems to be stomach related with belching, vomitting, weight loss, no appetite and something akin to general malaise. It has been 7 weeks since last dose. Now I am not sure symptoms are new or still withdrawal. See doctor next week to talk about it. Not much fun as this drags on and on.

    • David April 2, 2016, 1:41 pm

      Today marks 4 weeks for me, and I had abdominal and joint pain start within the last few days, along with nausea. I have a feeling this stuff can start at any point within a certain time after your last dose.

  • David April 2, 2016, 1:45 pm

    I was on prednisone for 14 years for my kidney transplant. My doctor took me off it when I developed osteoporosis. It took 3 months, and today marks 4 weeks since my last dose. I lost 9 pounds in water weight the first week of weaning. I’ve had issues with low blood pressure and low blood sugar, headaches, and loss of appetite. These have gradually diminished, but I have recently developed joint pain, abdominal pain and nausea, and increased anxiety. I am not totally sure what to expect after being on it for seemingly longer than the vast majority posting on various threads.

  • Jackie Fielder April 4, 2016, 1:23 pm

    Have been on prednisolone for 1 year and 10 months – started on 60mg, went to 40mg after two months. Cant remember when I started reducing lower than that but have been reducing from 10mg down by 1mg increments every two weeks and am now off them for the last week. I feel as though I have a bad case of flu!!

    I have bad pains in my bones of my fingers, hips and back but saying all this am delighted to be off them and hopefully can stay off them. The symptoms are bearable if not a little debilitating. The tiredness is something else, but if they are only going to last for a few weeks I can cope. The symptoms haven’t stopped me working!

  • Karen April 4, 2016, 2:39 pm

    I was prescribed Prednisone for 5 days for a sinus infection along with Levaquin. Day 3 of taking both of these medications my heart was pounding out of my chest, chills, and the anxiety was brutal. I couldn’t eat anything thinking my throat would close up. I thought it was a side effect for Levaquin, but still continued my dose.

    Today is day 10 off of the prednisone and I still have a problem with eating, and I definitely cannot tolerate any carbonated drinks nor caffeine. I have been drinking a lot of water and have kept my diet to a bland minimum. Side effects are subsiding but they are still lingering! I never want to feel like that again. I was literary crazy out of my skin!!!!

  • Kassie April 8, 2016, 6:05 pm

    I was on prednisone for over a year because of my sever ulcerative colitis. Now that I have found a treatment that works I am no longer taking prednisone. I was on 30mg and tapered down by 5mg a week. I am experiencing sever abdominal pain, nausea, throwing up, diarrhea, sever mood swings and depression, fatigue, and just over all discomfort.

  • Nancy April 11, 2016, 7:58 am

    It has been a godsend to read this post and the many comments about withdrawal and side effects of Prednisone. I was prescribed 60 mg daily to fight the antibodies that are eating my red blood cells about 4 months ago. The drug did not do what my hematologist had hoped and had no effect on my red blood cell recovery.

    I have been tapering the dosage under doctors guidance after about two weeks at 60 mg daily. At first I thought I was on top of the world. Pain of my osteoarthritis diminished greatly, lots of energy and feelings of well being. But in short order I developed the droopy face of a basset hound and gained 25 pounds of a hard fought weight loss of 50 pounds I had struggled to achieve over the past year.

    I was eating non stop and had no appetite control at all. I am weaning off slowly and am down to 5 mg per day for a week and then down to 2.5 for a week and then none. For the past two weeks I have been in absolute agony from muscle and joint pain, depression, shortness of breath, thinner skin, bruising more easily, bleed very easily, anxiety, muscle spasms that cramp my feet and legs, great difficulty in sleeping, fatigue and overall malaise.

    I was about ready to go to the ER if this continued until I read this post. My eye doctor believes that the cataract that he diagnosed a week ago is also from the Prednisone. So now I have to have eye surgery for the results of a drug that did not even do what it was prescribed for.

    Think careful and do diligent research and questioning before undergoing prednisone therapy… the withdrawal side effects are hell…

  • Steve Owen April 12, 2016, 8:35 pm

    I am sorry to hear of the severe symptoms reported by others. I started taking prednisone almost 2 years ago for a kidney disease – FSGS. While I was experiencing the kidney disease and before the prednisone I was very weak and my legs became very swollen. I had trouble getting out of the car.

    My normal is to be very healthy and capable of doing physical labor for several hours without issue. The prednisone halted the kidney disease but I had many symptoms such as weight gain, moon face, crazy sleep habits, unbelievable cramping of every muscle in my body and so on. But I am grateful because it kept me from dialysis or having to look for a transplanted kidney.

    I have tried to taper off of prednisone twice now. The first time was with no accompanying medication. The kidney disease came roaring back, so I went back on the prednisone. The second time was when over a period of months I tapered to zero four days ago. This time I am also taking Tacrolimus, an organ rejection drug. I don’t believe the kidney disease is returning, but I am suffering from withdrawal symptoms – headaches, fatigue, muscle weakness, nausea, just feeling generally LOUSY.

    But, I expect these to go away eventually. My summary on prednisone is that in certain cases it IS a very useful drug. But there are significant side effects to deal with, so it should not be taken casually. One other comment – In my past I have taken steroid packs for poison oak and they have worked remarkably well with no detectable side effects. So, the impact of prednisone on people is highly variable for sure.

  • Alex April 17, 2016, 8:52 pm

    Dear all, thank you so much for all your comments. They help me a lot. I have ulcerative colitis and every time I have a flare up my doctor gives me Prednisolone. On my second flare up a few years ago I had huge problems with my adrenals after I reduced the drugs, dizziness, low energy, etc.

    I had another flare up last year and have been on prednisolone for over then months, started with massive doses of 40 mg orally and 40 through rectal foam. I am on 7 mg now, reducing a mg each week, but apart from feeling exhausted, I have been feeling depressed. Yesterday I woke up with terrible thoughts, suicidal, thanks God they didn’t last long, but were scary.

    Meditation and prayer helps me a lot. And understanding this is connected to prednisolone withdrawal helps deeply. It will pass. These depression, low energy and anxiety are particularly hard since both my elderly parents are very ill, and facing this is very tough. Last time I had withdrawal symptoms I read a book Adrenal Fatigue, by James L. Wilson, he talks a lot about helping the recovery of the adrenals with lots of vitamin C, as well as doses of vitamin B5 and magnesium, and habits such as going to bed before 11 pm.

    Has anyone read this book and found it helpful? Thanks again for all your comments, I have faith these symptoms will pass. I will try to avoid going back to prednisolone if I have another flare up, the alternative according to my doctor is azathioprine, which also has its problems, but prednisolone is really tough. Thank you so much.

    • Janet April 19, 2016, 10:32 pm

      HI Alex, I also have UC and I also take azathioprine… this drug helped me finally get off the prednisone. I have had UC for almost 14 years now and my body has become dependent on the drug. Azathioprine helped me be free of that awful drug.

      It works to stop the inflammation but the side effects and now the withdrawals are so life altering. I just have to live day by day and hope I am one day closer to relief. Thank you so very much for your comment… it is so nice to know someone else out there knows how I feel and I’m not crazy.

  • auriah April 18, 2016, 4:14 pm

    Reading your stories makes me feel so much better… took prednisone 20mg for 3 weeks tapered to 10mg for 3 days then went cold turkey. Feel tired all the time and always worrisome about my health. My tiredness becomes part of every conversation That I have I’m hoping to go back to normal in at least 3 months. I work in the ER and I’m currently being moved to a not so demanding department because of always being tired… I hope we all get better over time…

  • Carmen Breding April 18, 2016, 10:52 pm

    Hi, everyone. I was recently put on prednisone, 60 MG per day, for five days. For 3.5 months I’ve had a mystery illness causing fatigue, brain fog, vertigo, light sensitivity, sound sensitivity, etc. An ARNP prescribed prednisone and it’s been 1 week since I stopped taking it. I feel 100x’s worse!

    I feel like I’m dying. My vertigo is horrible, my brain fog and vision problems are worse too. I’ve had trouble sleeping, heart pounding, weakness etc. I can’t even care for my 2 year old son. I need 24 hour help with him and with normal life functions. My anxiety has gone through the roof.

    I feel so hopeless, like the Dr’s will never find the cause of my original illness and depressed because it is so much worse now. Thank you all for sharing. It’s nice to know I’m not alone.

  • Missy April 19, 2016, 11:57 am

    I too went through all these terrible side effects I’ve read about. I had anxiety so bad I didn’t want to be home alone. I never experienced anxiety before. I want to tell you, there is a light at the end of the tunnel. Hang in there.

    All those awful things happened to me from the 7 day pack. Had I known, I would never had taken it and will never again. Like that old saying, when a train goes through a dark tunnel you don’t jump off stay on because there is light at the end of the tunnel.

    Well that’s not exactly how it goes, but you get the just of it. It WILL All get better. I experienced severe anxiety, migraines, diarrhea, dizziness, and so on. Remember you are loved and this WILL PASS. That hell is only temporary.

  • Janet April 19, 2016, 10:21 pm

    Hello everyone! I have ulcerative colitis and had a flare that started July 6, 2014. I was very sick and admitted into the hospital. I was immediately started on high dose of Solumedrol (IV form of the drug). I was frustrated to know that I was put on steroids again because I can’t handle this drug…but once they start me on it I HAVE to wean/taper off or I will get even sicker (I know this from past experience).

    I was on 40mg of Prednisone for over a year and finally was able to taper it down… on March 15,2016 I finally took my last dose. Even though the drug saved me and I survived the HORRIBLE side effects, I am now suffering from the even WORSE withdrawals. 4 weeks have gone by and I am anxious, depressed, my skin is dry, my hair is dry, my body aches, joints hurt, headaches, fatigue… the list goes on and on.

    I completely understand all that you guys are going through… even the suicidal thoughts. This med is like chemotherapy… it can save your life and kill you in the process. Thank you everyone for your comments. You helped me make it through another day.

  • Jim April 29, 2016, 2:46 am

    I got off prednisone a number of weeks ago. I was weaned off it but not sure if it was slow enough or not. I’ve been experiencing many of the symptoms listed above. However, there is one not listed and I’m wondering if anyone else has had this problem. I’m holding water and even on water pills (I’m up to 4 a day) it’s leaving my body extremely slowly.

    Has anyone else experienced this? I’m beyond grateful that my wife found this site as I’ve been suffering since February when the weaning was done. The pain in my muscles has been horrible and along with so many of the above mentioned symptoms, I’ve been through so many tests that have given me no help. I was on the medication due to being on a strong medication for prostate cancer called Zytiga.

    Even after stopping the Zytiga, I was kept on the Prednisone longer so I could be weaned off. It wasn’t until I met my urologist today that it even occurred to me that this could be related to the Prednisone. If anyone has the problem with water retention, I would very much appreciate knowing. I see my family doctor next week and I plan to bring the information my wife has found here to him.

    I just want to make sure I have every piece of info I need. Thank you!

  • Duane May 4, 2016, 6:22 am

    I’ve been on prednisone since November, and now am slowly coming off of it. I’m taking it because my filters in my kidneys get inflammation and don’t filter my blood properly. I’ve been on this drug a few times over the last 12 years, but this time it really hit me hard.

    Like others have mentioned, insomnia and anxiety were the big ones for me. Nervousness and weakens along with blurred vision all ended up me going off work. The drug does do what it’s meant to do, my kidneys are “shocked” back to normal.

  • Linda l. Izzo May 11, 2016, 1:35 pm

    Outstanding, has helped me realize there is a light at the end of the tunnel. Stay strong everyone, keep the faith, we are not alone.

  • Perry May 14, 2016, 3:18 pm

    Wonder drug for some but the drug from hell for others. I have been reading all your comments I am a desperate husband with a very beautiful wife suffering from Dermatomyositis for the past 33 months. She has stopped prednisone 5 weeks ago she has all the symptoms you shared but also a severe skin reaction.

    Her skin is very itchy and is pealing like a severe sum burn. Bathing with a mild body soap mixed into the water seems to help. We went to a Body Talk physician and have started her on CDB oil 3x daily 13 drops under her tongue. I have tried lots of different lotions right now one with mostly aloe Vera plant as main ingredient.

  • Denise May 14, 2016, 9:47 pm

    All of these posts have been so helpful. I don’t feel so alone and lost anymore. I have asthma and was put on prednisone every time I had a major attack. I am 58 and my asthma was caused suddenly a couple of years ago because of substances I was working around. After the first year I seemed to be going to the ER every other month.

    They would pump me full of steroids and send me home. By the second year, I had to go on a very low dose of prednisone (5mg a day) just to be able to do the job I was at and to keep my asthma in check. I was on it for nearly 8 months. I finally quit the job and weaned off the prednisone. Now I am having many of the withdrawal symptoms I have read about here.

    I have pretty much NO energy, sleep 9 – 10 hours and take naps (which I never did before). I am dizzy and feel light-headed a lot. I fear driving and tend to get panicky in certain situations especially going over bridges or thru tunnels. Never had that problem before. My eyes always feel like there is something in them – like dust or something and they tend to be blood-shot.

    Oh, and let’s not forget being jittery , for no apparent reason. Even though my dose was very low I wonder how long before I feel normal (if ever) again. I’ve been off now for 3 weeks. Are there vitamins or something to take that could get rid of the fatigue? I’m beginning to wonder if I would even recognize feeling “normal”.

  • MG May 15, 2016, 5:51 pm

    I was prescribed prednisone in the ER when I ended up there last week with pneumonia. I was instructed to take 60 mg’s a day until it was gone and then stop. Nothing was mentioned about withdrawals and side effects or that it might elevate my blood sugar because I’m diabetic. Needless to say I’m on the second day of stopping this evil drug and yes my pneumonia is clearing up, but the side effects I’ve been left with seem to be worse than when I started.

    Extremely high anxiety, confusion, ringing in my ears, insomnia. I never, ever would have started this medication if I had known what I was in for, if this helps anyone from taking it than this post has done it’s job. If I had just stuck with antibiotics I’m sure I would have been just fine, but now I’m stuck with a whole new batch of unwanted symptoms that are having a huge negative impact on everyday life. It’s even interrupted my work schedule, forcing me to take time off until I feel somewhat sane/normal again. This is a total nightmare.

  • EllenMyer May 16, 2016, 11:51 pm

    Thank God I had it. I would be dead. I have been on it for many years, at 10 mg and every time I try to get off of it I get very sick. I doubled my weight and became diabetic. But without it, I would not have survived. I am going to try again and do it slower. It is a good drug that has to be used carefully and often saves lives. Just wanted to give the positive side to pred.

  • Laura May 18, 2016, 2:52 pm

    I have been suffering for over 5 weeks since stopping, with symptoms ranging from severe anxiety, leg cramps, muscle aches everywhere, swelling in my neck and legs. I was on a course for a week, then I got a booster, then another course, for a severe allergic reaction to an antibiotic. I was up to 80mg one day, 60 the next then tapered off and started again back up to 60mg, then tapered off again.

    I have been feeling like am dying every since, been to doctors for tests to find what was wrong and all they gave me was antidepressants. I lost a lot of hair too. Miserable. Awful. Granted it probably saved my life as the Benadryl every two hours would not have cut it, and I became severely dehydrated, but this is awful.

    I hope I get better. It has been really hard to stay positive, I cannot control my thoughts and I am so weak still I can hardly carry on with day to day functions. Thank God I found this article to give me comfort. Thank God.

    • Gillian May 27, 2016, 11:31 pm

      Hey Laura, How are you getting on? I am going through similar. I breakdown on a basis regular and am struggling to cope at the moment. Thank god I found this article too as I was feeling so isolated and down in my self. I try so hard to be positive too but the side effects have brought me to my knees. All the best, Gill

      • laura June 6, 2016, 1:30 am

        Thank you so much for replying! I am still having random pains all over, mostly my legs occasionally my arms. going to get blood work tomorrow and I am freaking out. My doctor, who I have seen several times for this, says it is severe panic disorder. He wants me to start antidepressants but I really don’t want to.

        Just want to feel better. I have a good day and then a week of bad. Going to try two bananas a day, and a glass of wine. Also taking Advil every 6 hours or so. Helps with the pain, but not the depression of it. I am still scared I am going to die.

  • Ashley May 20, 2016, 6:34 pm

    It’s been 10 weeks since I got really sick. I was told at first that I had a virus that would go away on it’s own, then I was told I have pneumonia. I was put on 60mg of prednisone for 1 week, 50mgs for 1 week, 30 mgs for 1 week, 20 mgs for 1 week and then 10 for 1 week. Since stopping the prednisone I have severe anxiety (which I never had), I constantly shake, I get a pounding headache and nausea every evening around 6 pm.

    I saw my family doctor and instead of tapering me down lower she told me I had to ride the withdrawal symptoms out and that she couldn’t give a time frame for my recovery. I was given Atarax to help with anxiety which is like benadryl and it does help but I’m constantly dried out feeling and sleepy. Once a week I have an emotional breakdown and I end up just going to bed for the evening.

    I called my doctor back and let her know the anxiety level was becoming to intense and I needed something more. I’m now on day 3 of 25mgs of zoloft after 1 week I will go up to 50 mgs daily. I was told my cortisol level was at the low end of normal and until my body learns to make cortisol on it’s own again I’m going to be stuck with these symptoms.

    I’m glad I’m not the only one going through this. Whenever I’m having a bad day I go back and read everyone’s stories and it helps me get through one more day. I will continue to post as time goes on to give an update on how long it’s taking to overcome this withdrawal business. ;)

    • laura June 6, 2016, 2:02 am

      I am going through the same and I am going for more comprehensive blood work tomorrow. But, probably because I am a basket case, I am terrified of the results. I read this posting frequently too and it makes me feel better. My doctor is almost insistent on my starting antidepressants too. I am really scared. The pain is random and everywhere an it has been around 7 weeks since I tapered off, for the third time in two weeks.

      • Ashley June 12, 2016, 7:52 pm

        Laura, How are you feeling? I’m on week 6 of no steroids and I’m struggling daily with anxiety and constantly feeling tired. I was put on zoloft 25mgs for a week and then upped it to 50 mg. I had to go back down to 25 due to my BP shooting through the roof. Im also on atarax every 4 hours and trazodone at bed to help me sleep. I’m waiting for my referral to the endocrinologist to see if my adrenal glands are responding correctly.

  • Pam May 27, 2016, 12:14 pm

    I’ve been on several prednisone tapers in the last year for severe asthma flares. I’m currently on taper starting at 50 mgs per day and I feel like I’m losing my mind. I’m afraid my husband is going to leave me because I’m so sad and emotional. He does not understand that this is a result of the steroids and thinks I’m just crazy and annoying.

    Now he doesn’t want to be around me which is making it worse. I am trying hard to be rational, but it’s hard with all these meds in my body. How can I get him to understand that I can’t help the mood swings and depression? I’m at my wits end. I need to be able to breathe but this is destroying my life.

    • Gillian May 27, 2016, 11:48 pm

      Hi Pam, I hear you it is not easy. I am the same with my partner. I have gone through the side effects with him previously and thanks be to god I came across this website today and filled him in about all about the effects the steroids were having on other people. This also reassured me I was not going crazy.

      Support from the closest people around you is really important and knowing that you are being cared for by your family is vital. My Sister and My Aunt have been my rocks through this plus I can share all my feelings with them or I’d go mad. Hope you are going okay. Take care of yourself, Gill

  • Petr May 29, 2016, 9:06 am

    I am 32 year old healthy and sporty guy. I had been prescribed Prednisone for an infection after Parotitis, took 10mg the first five days, than 5mg for two days. The symptoms were coming back a little so they put me back on 15mg for a day, 10mg for two days and 5mg for another three. Total of 13 days of use.

    I have experienced some insomnia, shaking and hearth pounding already the second day I had been taking it, contacted my doctor and he told me not to stop it. So I continued, had some severe anxiety issues, constantly watched myself if I am getting better or worse and such. Just a very uneasy feeling of constant stress.

    The worst came after stopping though. First day off it I have had a very blurry vision, headache and neck pain, thought it was very weird. Second day off it I felt like having a heart attack, went to ER and all the test were fine. It has been a week since I withdrew from Prednisone and I just feel very tired, anxious, foggy and depressed.

    My head doesn’t feel right and I have some tingling and shakes in me hands and feet. The worst part is that I keep analyzing myself for symptoms of like every disease in the world, I just cant stop thinking about it. It is a feeling of constant stress and anxiety over my health and mental health, just don’t feel like myself at all and its very confusing.

    Is this even possible after such a low dose and short time taking it? Doctors tell me I should feel fine already.

  • Charlene June 4, 2016, 6:31 pm

    I’m so thankful I read some of these comments. I was given prednisone for poison ivy and I’ve had so many of the issues others have written about. I was given 2 rounds of pills and one shot. I was covered with skin irritations and felt I had to have help.

    I’ve been off of the prednisone for 4 weeks but since then I’ve had so many issues, tiredness, shortness of breath, auras, colon issues, horrible leg cramps at night, but the scariest one was waking up at night with chest pain and blood pressure at 238/118.

    The cardiologist said it could have been caused by the medicine and that it didn’t cause any damage to my heart, that the symptoms would go away in about a week. It hasn’t and I really felt hopeless until I read some of these comments. Maybe time will help.

  • Deb June 8, 2016, 4:19 pm

    Hi everyone, just wanted to add my comments to this. I was on steroids for about 3 months for a severe case of bronchitis. I had lots of wheezing and low oxygen levels. It started with a shot, then a dose pack, then 60mg for a little, then 40, then 20mg. I was ok until I got down 10mg, then I started to noticed my mood dropping and lots of nausea & diarrhea, sore muscles.

    When I dropped from 10 to 5 I felt even worse. Talked to my doctor and we went back to 15mg, dropping by 2.5mg a week. I’m currently on 5mg getting ready to go to 2.5mg tomorrow. I have a lot of depression and anxiety (note I did have trouble with anxiety before this but I was doing a lot better before tapering off the steroids), tons of fatigue and still nausea/diarrhea.

    I’m just hoping once I get off this, my body will level out. The one other thing I did notice as once person mentioned is that I’m getting a lot of swelling in my ankles and feet since dropping to 5mg. Praying for all of us through this difficult time!

    • Heather June 14, 2016, 9:30 pm

      Similar story. I didn’t taper because my last dose was a tapering shot. The symptoms are kind of spread out. My swelling is gone, but I’m still dealing with the weight gain in weird places. I didn’t have the nausea and diarrhea until recently – I thought it was a reaction to the antibiotics I was on but now maybe not. Lots of headaches, fatigue, anxiety (though I’m also prone so who knows) and now body aches.

      FYI – in the short term, I had a harder time with tapering than I’ve had with a shot or with the 5 day burst of 30mg. There’s some science around the burst on short term symptoms, but I’m not sure if it really applies when you add it all up over several months.

      Still, thought it sucks to have this stuff, it’s reassuring that it’s not just me. It will pass eventually. I talked to an herbalist and they recommended Ashwagandha for regulating hormones. It seemed to be helping, but it can contribute to the digestive ick so I’ve gone off it for a bit. You might ask an herbalist or a doctor who works in cooperation with naturopaths if there are any supplements that can help.

      I’ve also heard good things about acupuncture. That’s my next stop. Good luck!

  • Heidi June 9, 2016, 9:48 pm

    I agree with some of you… When there is no alternative this drug is a lifesaver. I spent almost a year with a numb arm constant nerve radiation and the the muscle became spasmodic every time I tried to move my arm. The pain became excruciating. Lying down would caused immediate numbness and swelling to the arm.

    I already had major back surgery 1 1/2 years prior. I was fusing and then got hit head on by another driver and that is how this all started. I spent 8 months having test after test (5 MRIs, CT scan, EMG, muscle tests) with no diagnosis. At the end I was sleeping in the living room sitting up in a chair dangling my arms because that was the only way I could sleep and my anxiety increased; I was at my wits end I couldn’t take it anymore.

    The neurologist decided I had traumatic brachial plexopathy and decided to start me on 60mg of prednisone a day. I was on that for 6 weeks, then he took me to 40mg… I immediately broke out in acne, had severe abdominal pain with diarrhea, night sweats and had pain in my calves, with my back spasming too.

    2 weeks later he told me too wean myself as quickly as possible because of the side effects. So I lowered the dose by 5mg every 3-4 days and I just got off 5 days ago. I am still having extreme muscle weakness, still have abdominal cramping and loose stools every time I eat. My back is killing me. As I stated I take pain meds anyway, but I do feel like a truck hit me.

    I have worked full time this entire time because I have too. And I draw blood so I need my arm to work. Even though I had severe side effects, my arm is back to normal now and I would take the prednisone again in these circumstances because without it I would have gone crazy from the nerve pain and muscle pain.

    The neurologist says I may have this disease reoccur but hopefully not as extreme and I will have to take the drug in a smaller dose for a lesser time if this happens. I feel for all of you who have had these experiences. Sometimes the risk is worth the outcome.

  • Shauntae June 14, 2016, 4:37 am

    Jesus I’m going through withdrawal symptoms right now. I’m experiencing shortness of breath and pain in my muscles. I cannot wait to see my doctor tomorrow. This is too much

    • Ashley June 14, 2016, 5:50 pm

      You need to ask them about putting you back on for a longer taper. I was off 6 days and my doctor refused to put me back on (even though I work for doctors and they agreed that’s what I needed). I’m currently going through crazy anxiety which I never had before taking steroids. I’m not trying to scare you I just want you to know the possibilities because nobody gave me a heads up on any of the side effects.

      It’s been 6 weeks and 3 days since I stopped Pred and I’m still suffering fatigue, headaches, anxiety. My doctor is referring me to an Endo to make sure my adrenal glads are functioning correctly. I hope you get to feeling better soon! -Ashley

  • Dakota June 17, 2016, 10:27 pm

    Hey. So I was on prednisone for a week due to an allergic reaction to bactrim and now my blood pressure is through the roof and I haven’t been able to eat for 4 days without throwing it up and getting really sick afterwards. A week after I came of of it I was fine and started to feel normal again but now I feel like I’m on the verge of death.

    My lymph nodes are swollen and I can barely breath also no matter how much water I drink I’m always dehydrated and my eyes are always completely blood shot. I don’t know what to do I feel like I’m about to lose my mind especially now that I can’t eat without throwing up. Any suggestions? Also I don’t have insurance and can’t afford to go to the doctor.

  • ALT June 22, 2016, 10:32 pm

    I too have taken prednisone for the third time in a year for treatment of poison oak. I have hyper-sensitive skin and this seems to be the only way to get rid of it. (I have taken both the intensive 5 day and taper down. The taper down seems most effective.) This past time, I had been on it the drug from May 30-June 19, it has been miserable. Hands, jittery, blood pressure up, hot flashes, ick.

    Coming down off of the steroid I have developed a cough (w/mucus), I attribute that to the drug and also bad fatigue. I would love to know, if I contract poison ivy/oak again a more natural way to deal with it since my skin is HYPER sensitive. If anyone has ideas let me know. Thanks, get better soon everyone.

  • CR 2016 June 24, 2016, 2:34 pm

    I was prescribed Prednisone 30mg for 4 days – after a severe reaction to sand flea bites (who knew they attack after a rainy night at the beach?!). The Prednisone did help alleviate some of the inflammation from the bites, but after the last dose, a few hours later I had a very sore back of neck and jaw, which has lasted 2 days, and now on the 3rd day off of it, I am getting a severe headache at the back of my head. They should let you know these withdrawal symptoms before putting you on this crap, and there has to be an alternative treatment that doesn’t wreak such havoc on your adrenal system.

  • Orlando M June 25, 2016, 5:42 am

    200 mg per day for 5 days a month for 6 months. Cold turkey stop every cycle. Very rough! I’m pretty resistant to pain but I felt as if I was dying. At three weeks after treatment now and at times I cannot even raise my arms because I’m so week. Eating seems to help! All vitals are good. It is slowly getting better! Best of luck to all that are on a similar routine!! Thanks for the great information on your site!

  • Katalin Fee June 28, 2016, 8:34 am

    I’m a 17 year old girl who took Prednisone for poison ivy, my mother seems to think that I’m having withdrawals. I’m worried it’s a summer flu. How can you really tell the difference? Please, I’m in a lot of pain with no end in sight yet.

  • Wynne July 7, 2016, 9:57 pm

    Hi everyone! So glad I found this site! As someone said, you just feel so alone. I went on 3o mg Pred in October for PMR & have been in very slow taper. This mo. I’m down to 8 mg. WHAT HAPPENED!? Feel terrible 24/7–mornings are the worst! Joint pain, muscle pain. Can’t pull a shirt over my head. Getting in a shower is difficult.

    Still run & walk for sanity but feel it afterwards. Feels like some awful toxin is at work. Tired beyond words! I thought the PMR was coming back but the blood test was ok so now I realize it’s Pred withdrawal! Thank heaven for the drug that saved me but it’s horrible going off!! Reading these stories gives me hope that it won’t always be like this! I’m sending comfort to everyone on this site! (And those that aren’t!)

  • Jessica July 9, 2016, 12:45 am

    Just wanted to add my experience to the thread. I had a bad reaction to coconut at the beginning of May and went to the hospital where I was given a 5-day, 60-mg dose of prednisone. For the record, I’m 26 and have never had any prior health issues. About 36 hours after my last dose, I had a horrible reaction. I couldn’t stop shaking, my chest felt heavy, and I was short of breath.

    I felt incredibly agitated, so I just kept pacing around the room, debating whether to go back to the hospital. I decided to just power through. The first two weeks were especially rough though I continued to have shortness of breath/heavy chest off and on over the following few weeks. I’m about two months off of prednisone, and the shortness of breath started flaring up again, so I saw a doctor, who prescribed me an inhaler and recommended I start taking an over-the-counter allergy medication.

    That seems to be helping though I still have anxiety and some occasional chest flutters, which makes it difficult to get to sleep most nights. I’m fine when I’m distracted–it’s just mostly at night when I’m starting to get settled down that I don’t feel quite myself. I also love going for walks outside, and I’m sad that I should generally avoid that when I can to prevent unnecessary flare-ups. This has certainly not been ideal, but if nothing else, it’s made me more grateful for the good health I’ve experienced up until this point.

    I’ve started eating healthier and exercising more in an effort to help the healing process, and I plan on taking this as a lesson to prioritize my health more–even when I’m distracted by work and friends and life. Best of luck to all of you going through this, and I hope you all have a speedy recovery!

  • Rhonda Loving July 9, 2016, 2:34 am

    I’ve been on Prednisone for almost a decade. Was recently taken off cold turkey… started HUMIRA… the new med is doing its job but I’m experiencing withdrawals. Whole body aches… can barely walk… hoping for relief.

  • RUSS July 12, 2016, 3:39 am

    I’ve been on 80 mg a day since Jan and not sure if the illness or the Prednisone is worse. I know this drug is saving me but wow…

  • C Washington July 12, 2016, 12:23 pm

    I have been on prednisone for 8 months. I am experiencing leg aches where I can barely walk… Shortness of breath. And extreme fatigue, foggy brain, poor concentration. Started on 60. Down to 2.5. Very difficult to function.

  • janice Stienlet July 13, 2016, 1:51 pm

    Have had a five day only 20mg a day because of cough allergy? Have just come off and feel awful. Jittery, skin crawling, don’t think would take this again and no advice from Doctor on how it might make me feel. Glad I looked at this site as makes me realize it is the pills.

  • Mikie_Mike July 15, 2016, 9:59 pm

    I seem to have a similar problem as a lot of you. I was on a fairly high dose of prednisone, for an ear infection, tapering off, for 12 days. I started with 60 mg, and tapered to 10 mg. Early on I became severely depressed, started having anxiety attacks, experience a tight chest when riding my bike, had extreme muscle twitching, etc. I ended up in the emergency room on day 5, because I was a little concerned taking this stuff, for me, at such a high dosage was dangerous.

    They initially thought I was having a heart attack, even though I told them I was sure if was the prednisone. After a number of hours, they came back, and my tests looked good, and they notified me I wasn’t having a heart attack. They recommended I get off the prednisone a little quicker. Anyway, I was already down to 20 mg in a day, so I went a head and tough it out and finished. Mistake? I don’t know.

    Near the end the anxiety was so bad I asked my doctor for Xanax (which I never used before). So, where am I know? The depression and the “tight chest”, and the muscle twitching is much less pronounced, but the anxiety is high… and part of that might be me trying to get off of 4 weeks of Xanax. Xanax was great the first 2 weeks, but then you become tolerant, and if you want the same effect, you have to take more.

    Not only that, but it has a short half life, so you really need it 2x a day. The doctor told me I could take 0.5 mg 2X a day, but I started with just 0.5 mg at night to sleep. In week 3 it still worked at night, but I was tempted to take it the next day because I was starting to have anxiety during the day (you body reduces the amount of GABA it makes, hence the problem).

    Instead of going down that road, I decided to just quit, so I’m now doing 0.375 mg at night and 0.25 mg the next day (still less than the doc said I could take).

  • Mikie_Mike July 15, 2016, 10:03 pm

    I’ll keep lowering the night, to match the day, then start working them both down to zero. I’m hoping this is the remaining reason for my anxiety, but will see. I’ve never done drugs, so even though this is considered a low dose, I guess it’s very impactful for me. Anyway, I’d recommend people not get started on Xanax, and maybe try good ole magnesium, which seems to also help… at least me.

    I saw a couple of people recommend it, and tried it, and I think it works… no sure, only done it 2 days. Anyway, good luck to everyone… this is truly a miserable experience! Sorry, one clarification… the depression and tight chest have completely gone… a little muscle twitching and a lot of anxiety left.

  • Julie July 17, 2016, 12:22 pm

    My story is a bit different to most of those I’ve read above. I was put on 40mg Prednisolone last August after suddenly developing severe pains in my fingertips, which was diagnosed as vasculitis. The rheumatologist correctly assumed my immune system had gone haywire in response to a tumour, but it took six months to find it, during which time I developed the moon face, acne and pot belly.

    He realised the Preds weren’t doing me any good (although they were very effective in controlling the pain) and started switching me over to Methotrexate, which made half my hair fall out. In February this year, after three mini-strokes, the neurologist sent me for an ultrasound of my heart, and there was this enormous tumour (myxoma), half blocking the valve and causing blood clots. I was anaemic too, but that had been disregarded as a side-effect of the vasculitis.

    I’d previously had a full body scan (PET/CT) but that had missed the tumour because it is basically looking for inflamed tumours (i.e. blood collecting in tissue), not tumours in places where blood is supposed to be. Anyway, by that stage I had tapered the Preds down to 15mg and was on 20mg Methotrexate. I had urgent heart surgery to remove the tumour and am now fully recovered according to my cardiologist. The strokes stopped and the vasculitis subsided, so I immediately set about tapering off both drugs, completing my withdrawal at the end of April.

    After two months the moon face has gone, and so has half the increase in my waist size. However I am suffering badly with weak aching muscles (especially my hips and shoulders), and with swollen ankles, both of which I attribute to Prednisolone withdrawal. I also find I tire easily, which is interfering with my social life. Can anyone tell me how long these symptoms are likely to last?

    • salma December 2, 2016, 8:31 pm

      Dear Julie, I used prednisone for 3 years (high dose) and 1 year and 6 months small dose. I left this med sometime in July 2015. Please be patient. The withdrawal symptoms for my case took about 1 year and 2 months… It was very hard and painful phase. Just be patient, listen to your body.

      Try to understand what triggers pain for you. For example, if I do not get proper rest or sleep it will trigger body pains… Wrong food – it triggered swollen feet and hands etc. Avoid overworking your body. Weekends mean being lazy even if you want to go out. That’s what helped me. After that phase… Now I have rheumatoid arthritis, I am back using pred again – lower dose.

      I am hoping that it will be for a short period of time only. I just wanted to share that. I wish everybody a quick recovery.

      • Vicki December 6, 2016, 3:45 pm

        Wow – so it took you about 14 months for the withdrawal symptoms to stop. How long did it take before the symptoms began to get a little better? I was on prednisone for around 7 years for PMR (polymyalgia rheumatica), – very low dose the last 2-3 years. After stopping, I would up having increasingly achy and weak hips/legs and shoulders/arms.

        After 9 months of that – with no sign of it getting any better, I wound up getting back on prednisone. (Whew, relief.) My rheumatologist still isn’t sure whether this is an atypical PMR relapse or atypical pred. withdrawal. In any case, if I can get my pred. dosage really low, I figure it doesn’t really matter. Thanks!

  • Janet July 17, 2016, 8:25 pm

    I am so relieved –not happy– to find this site! I’m not happy that so many have and are suffering from taking this drug. It’s a wonderful drug for those who can tolerate it, I guess–and for conditions that require it. But–for sudden hearing loss, it is the one drug that does help, if anything is going to. My hearing has improved somewhat.

    But after withdrawing over about 4 days after taking 60 mg. daily for 5 and feeling absolutely awful, with b/p elevating and constipation and feeling ‘wired’ and anxiety bad and shaking, I told my doctor I couldn’t take it any longer. Ended up after taking the last pill, within 48 hours had horrible migraine–due to elevated b/p and the next 3 nights had to go to the E.R. for shots for elevated b/p and feeling horrible with bad migraines when I hadn’t had a migraine in 20 years!

    So, now the feeling anxious and still very dizzy and ‘tremors’ of hands and even body going on, I will be so glad when this is over!! B/p is now back to where it had been prior to this med. and is being managed well with my normal dose of b/p meds! No more of this for me. I’m told it will continue to help my hearing possible for 2 more weeks or so. That’s the good news.

    But this is not a drug I would consent to anymore. I don’t do drugs well anyway and this has been ‘awful’! And may not be over for awhile. (:

  • Bill Flack July 17, 2016, 11:52 pm

    I was on prednisone for Myasthenia Gravis for almost 18 months. I tapered slowly and I am now completely prednisone free for almost 3 weeks. My treatment consisted of 60mg (in hospital for 2 weeks) to 40mg for a few weeks, to 30mg until June of last year. After getting down to 20mg a day, I started having body pains and severe fatigue. I tried to taper in various ways, and it seemed futile.

    Finally, my doctor told me to do 20mg a day, every other day for two weeks, then reduce to 15mg every other day for two weeks, then 10, then 7.5, then 6, then down one mg every other day for two weeks until I was down to 0. I did that and I’m finally off the drug. I do not suffer from depression or anxiety, I have lost a little weight, my blood sugar is back to normal.

    Now the bad news… I have days when my body is in terrible pain. My bones and joints ache terribly. Usually on those “bad” days, I get this terrible fatigue which I can not fight. I have no choice but to go to bed. My doctors tell me they think I’m in withdrawal. I had one test that said my adrenal gland is working, but another doctor told me that the test I took isn’t accurate.

    There is another test available but it takes a whole day of blood work to complete. Bottom line for me is…I almost died from the myasthenia Gravis crisis and prednisone saved me. I am now on a steroid replacement that is not a “steroid” and that seems to be keeping the myasthenia under control. I believe there is an end to the withdrawal but it will probably take a few months for me because I was on the drug for so long at such high doses.

    I’m hanging in there.

  • JOYCE July 19, 2016, 9:47 pm

    Was on PD for 22 years for RA last 5-7 years at 5mg daily. Weaned off March 2016. I am so exhausted and muscle aches had blood work done all NORMAL. So tired!!!

  • Mikie_Mike July 20, 2016, 4:11 am

    Most people don’t seem to follow up when they start feeling better, so I thought I would… :-) I actually feel pretty good tonight, and have cut my Xanax in half (took it for the anxiety), so I don’t think I’ll have much trouble getting off it in the next couple of weeks. I hate to admit this, but the last of my anxiety disappeared when I quit taking a vitamin I started after I had the prednisone side-effects.

    Because of those side effects, I started eating better, riding my bike about 50 miles a week, and started taking a B-complex (with a few other supplements – D3, Omega-3, E). It turns out the B-complex was responsible for the remaining antsy feelings, and muscle twitching (which I took for anxiety). Please note I wasn’t taking any vitamins when I started on the prednisone, so all those initial side effects were totally due to that drug!

    I had never felt like that in my life, and have certainly developed a strong sense of empathy for people with chronic depression and/or anxiety. Anyway, the B complex was called “Now B-50”, and it has extremely high doses of various B vitamins (like 3333% recommended daily value for B1, etc.). Be careful with these vitamins if you’ve had anxiety, because they can make you feel wired!

    It’s been about 4.5 weeks since I stopped the prednisone, and I think I see the light at the end of the tunnel. I wish everyone the best of luck… and hang in there!!! My doctor kept telling me it’d get better, and by the way… with all the bike riding over the last month, I lost 12 lbs!

  • robyn July 20, 2016, 11:07 pm

    I was on Prednisone for 5 days at 60 mg per day. I started experiencing flushing of the face pretty much right away. It’s been almost 4 months since I last took Prednisone, but I still have the facial flushing. Does anyone else have this for so long?

    • Ray Furbush November 25, 2016, 8:46 pm

      I have had the same facial flushing now for 2 months. Did it ever stop for you?

  • Laura Williford July 22, 2016, 9:37 pm

    If only I’d known—did a 14 day taper-off pack, very low doses, in December. First day off drugs felt achy, depressed, foggy, etc. Had an emotional melt-down at work (went to parking lot & threw a tantrum, but people saw & reported me), got written up for unprofessional behavior. Seven months later, withdrawal symptoms long gone but got a lousy job performance review. All over a sinus infection. Best of luck everyone!

  • Helen July 22, 2016, 9:41 pm

    ER treated for poison ivy: 12 day taper off starting with 40mg for four days, etc. On day 4 experienced vision problems & a different rash. Doctor tapered me off in two days. Seems my immune system was compromised. I now have eczema in addition to poison ivy. What a bummer! Prednisone is a pill-based atomic bomb at least for treatment of condition like poison ivy.

  • Colleen July 26, 2016, 1:00 am

    I was on Prednisone for a total of 6 weeks 10 mg per day, tapered to 5 mg for 3 weeks and then 2 mg for 3 weeks… Just went off 5 days ago… I can barely walk, my joints are killing me and the muscle aches and overall “sick” feeling is horrible! Can someone please tell me how long this will go on??

  • Anna Sims July 26, 2016, 3:00 pm

    My GP prescribed Prednisolone for me for ulcerative colitis. I started at 40mg per day, then tapered off over several weeks. My initial side effect was euphoria (feeling high). I could not stop talking and although everything I said and did made sense, I did not feel my usual self.

    When I tapered down to 5mg per day, the side effects were very unpleasant anxiety, nausea and dizziness. I think I would rather have a colostomy bag (the cure for colitis) than take this medication long term, I don’t like feeling out of control of my body.

  • Gary Watson July 27, 2016, 8:48 pm

    I have been on Prednisone since March of this year for two types of organizing pneumonia. ARDS and BOOP. This drug was the only drug available to treat me and it saved my life. Talk with you doctor and health care professional before you take any medication. It’s your body. Have a clear understanding of all side effects and what to expect when you come off of it.

    I’ve read many comments where it was said that their doctors didn’t tell them what to expect. That just baffles me as I wouldn’t put anything in my body without knowing what it’s advantages and disadvantages are. Inform yourself. I am so sorry for all of you that are experiencing problems coming off Prednisone and I wish all of you the best.

    I am slowly coming off of a high of 80 mg and am coming off 5 mg at a time till I reach 10 mg and then will drop 2 mg at a time. My withdrawal symptoms have been minimal “slight headache and muscle ache”. Talk to your doctor and ASK question. Good luck to all!!!

    • Colleen August 1, 2016, 2:57 am

      I guess I have learned my lesson of “trusting” a doctor… my doc said there would be little to no side effects when coming off. Thank God I looked into it after only being on it for 6 weeks… The doctor wanted to keep me on it a year. They still have no idea what is wrong with me, the prednisone was just a “band-aid” for them… never again.

  • ann marie August 5, 2016, 8:15 am

    Several times I have been on high rapid dosages of Prednisone ranging from 50mg initially decreasing down to 5mg and off I had NO side effects at all. Second time same situation same dosage, some tapering off time and dosage. NO side effects at all – none. Now I’ve been on it again for 1 yr and I am in the tapering off phase which is 2.5 mg a day now and so far so good.

    I just have blurry vision but that started just a day or so before the tapering phase!! Could be non related, I’ll know soon. I have found your blog very interesting and the vitamin and holistic medicine suggestions are wonderful. I routinely take many homeopathic remedies and have for many years, maybe this has made a difference in the withdrawal phases?

    I wish you all the best and remember to pray and offer up the suffering to Our Lord in thanks for His pain suffered for us. God Bless and I will keep you all in the loop. In Love and Light.

  • Judith August 5, 2016, 10:46 am

    I was on prednisone for 10 days. I was tapered off and still had some withdrawal symptoms as you described. But them in stages. My last dose was Friday, no changes Saturday, then Sunday I had the shakes and weakness in my arms and legs, heartburn and high body temperature. Monday I had diarrhea, Tuesday my face broke in a rash.

    It’s Friday now and I still have the rashes. I also noticed it’s taking me longer to comprehend things my family is trying to tell me. I have to ask them to repeat what they say to fully understand. I was given Prednisone to help with my pneumonia.

  • Diane August 8, 2016, 8:28 am

    I had pneumonia and severe pleurisy months ago and has left me with a partially collapsed lung and cough and wheeze a lot and in my job that’s not good! So have been given prednisone 30mgs once a day for 4 weeks then to taper down to 20mgs a day for another week and so on. I’ve just finished 4 weeks and tomorrow start tapering down.

    But since Friday I’ve had fever and head going to explode and feeling very sick and neck shoulders and knees ache. Are these side effects from just being on it or something else? (I’ve had a couple of feverish nights since pneumonia as was told it’s my body trying to fight the lung infection each time). Not looking forward to coming down off them after reading all things in here either!

  • Stephina August 8, 2016, 4:34 pm

    I took 20mg Prednisone for a itchy rash that was causing me to tear-up my legs and arms itching. I was on it from November 2015 through May 2016 when I noticed my hair was not growing and at half its volume. I stopped it and noticed 3 weeks later my hands would be stiff and numb when I would wake up and I have mild cramping in my legs. I feel like I am falling apart.

    Thankfully, I have found this site and realize this is all withdrawal symptoms from Prednisone. I had no idea I was supposed to taper down or what the medicine side effects were. It worked great on my itching allergy symptoms. I hope that the aches in my hands, legs and knees will soon end. Any recommendations for OTC supplements that will help with the aches? Thank you.

  • Bob F August 9, 2016, 3:40 pm

    In August 2015 I was diagnosed with Giant Cell Arteries (GCA). I was told this is a very serious disease and that I had to get on a very high dose of Prednisone right away to counter the inflammation on the arteries in my head. They put me on 60 mg for 2 wk and then I went down to 50 for 2 weeks, then 40 then 30 then 20 then 15 then 12.5 for a month then 10 for a month and at this time I am now on 9 mg for a month.

    I didn’t feel all that bad until this week. Now I am feeling very weak and fatigued. I also have headaches which I initially thought was associated with my GCA but now believe it is from the withdrawal from the prednisone. My biggest problem is the fatigue and weakness.

    Does anyone know if there is anything I can take to help me with fatigue while I am slowly tapering of this drug? Appreciate all responses. I am thinking of all you who are also going through this process. Thank You, Bob F

  • Phil August 16, 2016, 2:05 pm

    I am a sixty three year old West Australian male. I was diagnosed at forty five with Vocal Cord Dysfunction and with each serious episode put on prednisone usually a five day 150 mg course. This took place approx every month or two. After many years I lost most sexual function although the desire for sex has always been there and was prescribed viagra.

    Only problem I had to feel pretty good first which was a rare thing. About four years ago I was advised to remain on prednisone and managed at best to get down to 3mg daily. During this time I have gained weight have rounder face large stomach and yellow oily face. I was always a tall thin guy. My energy levels dropped and have been unable to work for about eight years.

    A month ago I was sent to a ENT doctor at a new location I have recently moved to. He told me to get off the prednisone and said I would be a new man in a couple of months. I have now been of this drug for 4 weeks and it is dreadful. Headaches sweets tiredness and uncontrollable anxiety has left me thinking I am going mad. I can’t sleep and function normally.

    Thank god my wife found this forum. It has given me some hope.

  • Michael August 19, 2016, 10:27 pm

    In March I was diagnosed with IGA Nephritis at 44 years old or burgers disease which is a kidney disease. My nephrologist put me on 80 mg a day of prednisone, and 175 mg a day cyclophosphamide chemotherapy pills. I ran the 80 mg prednisone for me two months, and then 40 mg for two months, and 20 mg for a month, then the plan is onto 10 mg, progressively stepping down to 0 mg. This prednisone feels like it’s about to kill me… the insomnia (4:00 am wake up every morning), the burning stomach, diarrhea, HBP, fatigue, sweating in a 69 degree room, and body aches now!!

    My kidney function is up to 60% from 30%, so it obviously is working. I told my Dr that I don’t know how much longer I can take it, so we’re planning the wean off steps. The chemo regime is a whole horror story in itself, low red blood cell count as of last blood test, anemia, so it looks like I will be getting off of it soon also. I will post a update in a couple of months…

  • Jackie August 23, 2016, 3:50 pm

    I have worked in health care for many years and have seen how corticosteroid medication is lifesaving for those I have cared for. Sure there are side effects all drugs have side effects. Being an informed consumer is done when the drugs are ordered. Every patient should be aware of the side effects etc.

    Ultimately it should start with the ordering provider and expanded in detail by the pharmacy filling the prescription. That is why consumers are given the patient information print out of each medication the receive. If you do not get it you should ask for it. I also have viral induced asthma and myself have been on prednisone for 3 month time frames twice a year for the last 5 years.

    This last time on prednisone started in September of 2015 with a viral infection. I got off for one week that November and after a week got another respiratory virus and have been on it until 1.5 weeks ago. I was on high dose prednisone for approximately 9 months. I had many complications during that time of steroid use. I started having withdrawal symptoms during my most recent wean which took 2-3 months.

    It did not hit in full force until after 1 week out after discontinuing the prednisone. Of course it is not fun nor desirable to have the withdrawal from it. I also know that it will pass eventually. Sometimes in a few weeks sometimes longer. I prefer to not have to take the drug ever again but without it my airway would have swollen completely shut resulting into a horrible death.

    I had blue lips at times on the medication because of airway swelling and would drop my oxygen levels with minimal activity to the 83 range. Normal is 90 and above. Desirable is 92 and above. I personally am not ready to die and prednisone was the only thing that kept my airway open while the treated a persistent infection. So I do understand personally and professionally what this medication can do.

  • Elaine August 31, 2016, 9:54 am

    I have been on prednisolone for 10+ years at 5-15 mg, and for the last year 15 mg daily!! I am gradually coming off them due to onset osteoporosis and other muscle problems. I am reducing slowly at 2.5 mg daily but even this low of a reduction is causing panic attacks. I would love to hear about your experience.

  • W September 3, 2016, 3:35 pm

    I got put on 60mg for one week as treatment for Bell’s Palsy. I took my last dose about 48 hours ago and I feel so ridiculously awful right now. Did anyone else notice their skin get extremely sensitive while they were on this?

  • Jeff September 6, 2016, 7:53 pm

    I was on .5 mg prednisone for 6 years following a transplant. I “gradually” quit by going from .5 per day every day to 3xs per week for a week to 2xs a week for a week. Then stopped. Every joint in my body hurts and I can barely stand and walk. How long does this go on?

    • Kelley September 8, 2016, 1:47 pm

      I was on a very high dosage after being diagnosed with acute interstitial pneumonia. It was the only drug that would heal my lungs. Over the course of 5 months I was weaned off the drug.

      About a week after I stopped I started having extreme joint pain and muscle aches and weakness all over. I am now 6 weeks off and am still having pain. I’ve read it could take a few weeks up to a few months to recover from the withdrawal symptoms.

  • benny jones September 7, 2016, 11:00 am

    I was taking up to 80mg of prednisone to treat an autoimmune condition known as Pyoderma gangrenosum for almost a year. But I was advice to gradually reduce the dose to 20mg. I stayed on that much for a while then back up again because my condition returned. Then finally weaned off starting at 1mg a month then to 1mg a fortnight and then weekly until zero.

    My side effects were muscle cramp, low back pain and excessive dry facial skin and thirst. Lost a lot of weight just after two weeks of the last 1mg dose. My face is still so dry and I have tried all intensive moisturizer but nothing helps. My face is itchy all the time.

  • Ann September 8, 2016, 4:03 pm

    To those of you who have had horrible withdrawal symptoms, I sincerely sympathize; I’m experiencing flu-like symptoms and serious going pain myself four days after finishing a prednisone pack. However, I feel the need to defend this drug in some cases and to add some perspective: My son, who is now 33, nearly died when he was 3; the doctors had almost given up on him.

    In one week, he went from a healthy normal child to one who couldn’t speak, stand, hold on to anything, among other horrible symptoms. One specialist finally decided to try prednisone, even though other doctors disagreed. He gave my baby adult doses to try to fight whatever had taken control of this child. Hours later, we began to see tiny signs of improvement. Eventually, he was moved from pediatric ICU, and a week later was able to come home (after four weeks and nearly dying).

    My son continued to take it for 6 months, and then we began to wean him off. He blew up like a balloon, he slept all the time, he lost his appetite, and he often cried out from pain in his joints. But PEOPLE, he was alive–all because of prednisone… I do hope you all can appreciate how grateful I am to this drug! I hope that your symptoms disappear soon so that you can get back to your lives!

  • Kathy September 14, 2016, 12:10 am

    I have been off and on the drug for a couple of years. It’s been a couple of months now and I still have upper arm and shoulder ache and pain. Some days I just sit and cry, it hurts so bad. Non-asprin is not helping, gone thru two bottles now. I felt great when I was taking predisone and would love to go back on it but I have bone loss and know I shouldn’t.

  • Julie September 16, 2016, 3:42 pm

    I tapered down to 2.5mg per day and then stopped, not having suffered any withdrawal symptoms up until then. My rheumatologist thought that would be fine. He was wrong. I put up with the weakness, muscle pain and swollen ankles (and feet and legs) for 4 months, but could feel myself going downhill.

    I seriously considered retiring (I’m 56), although I can’t afford to and I love my job, simply because I didn’t have the energy to continue. Then I gave in and went back on the preds at 2.5mg – the same dose I’d stopped from. After about a week the symptoms disappeared and I felt normal.

    Now continuing to taper more slowly. At the moment I’m alternating days 2.5mg and 1mg. I’m finding the 1mg days tough but not as bad as I was so I’m going to try and stick it out until my body adjusts. I’ll let you know how I get on.

  • B September 21, 2016, 12:05 am

    Was on Prednisone three months. This site has helped me a lot, having been in a living nightmare for about seven weeks from the taper to now 5-1/2 weeks off. It would really be so great if more would log on to update regarding recovery. Looking for anything to bring hope. Endo and ER do not believe me, say I should be over it by now and I should go to The Mayo Clinic.

    • Ashley September 28, 2016, 6:16 pm

      Hello, I just wanted to give my feedback on my recovery. I was on steroids for about 30 days going 70Mgs daily to 20mgs. After stopping the steroids I went through horrible withdrawal symptoms. Every bone in my body seemed to be sore, I sat and shook for no reason. I had anxiety that I never had in the past. I finally couldn’t handle the anxiety so my doctor gave me Zoloft 25mgs to start with and worked my way up to 50mgs.

      Because the Zoloft causes insomnia they also had to give me Trazodone @ bed. I’m feeling a lot better now that I started the anxiety meds but it was a rough bumpy road. I still struggle a little bit here and there but things will get better!! Hang in there. Feel free to email me if you have any other questions Blue7922[@]yahoo.com.

      • B September 30, 2016, 1:12 pm

        Thank you so much for responding Ashley. Things seem to not be improving for me. I am six weeks and four days off now. Have lost 17 pounds or so, which I did not have to lose. I am certain I am severely malnourished. Called an ambulance yesterday. Fifth trip to the ER. They diagnosed a likely ulcer. I am so dizzy and shaky all the time.

        I already had post-infectious IBS from food poisoning with chronic diarrhea, but had come along way with that, but now am fighting it every day since the Prednisone. Have problems with my standing pulse rate and having lots of mania type feelings. Endo put a note on my chart that my adrenals are fine and my GP and gastro doc refused to see me. ER diagnosed Adrenal Insufficiency on the first trip, because at that point I was on a 31 day course with no taper.

        They put me back on it, but Endo says I am fine now and ER has been condescending since, except for yesterday thankfully. I am trying to be strong, but have been mostly bed-bound for seven to eight weeks, since I got to about 3 mg on a pretty fast taper. Endo and ER docs don’t believe a couple weeks taper was too fast. Endo, GP and Gastro office told me to go to Mayo. You can’t just show up at Mayo. Don’t know what to do. What an evil drug. Wish I had never been put on it.

        • Ashley October 6, 2016, 3:01 pm

          You’re welcome! Everyone reacts to the medication differently. I think I react to it the way I do because I’m a female and it completely throws my hormones for a loop. I’m probably 90% better now but I still have some off days. My bones still ache and I tend to have random anxiety that I never had in the past, I still get episodes of being VERY tired. Hang in there the best you can. There is light at the end of the tunnel!

  • Jane September 26, 2016, 7:41 pm

    I had a severe asthma attack in January 2016 and none of the puffers helped so the hospital put me on 50mg plus steroid puffers and then my Doctor extended that to over three weeks. Next I was put down to 15mg and weened of over a couple of weeks. I am screaming pain and have swollen knees that feel light they have a tight bandage around them.

    I’m mid 50’s and feel mid 70’s, I cant get on and off the toilet, a chair or walk up and downstairs without one step at a time or a handle to support me. Doctors all say not related to the steroids but can’t find anything wrong with me. I’m so distressed and scared it will never go. I’m now living on Arthrotec and Tylenol to take the edge off the pain but my knees feel unstable like they are going to snap or twist.

    Now I’m told to take 15mg a day for two week and then taper off to see if it stops it but I’m scared what if I am just prolonging things by starting the rotten drug again. Weight gain is also an issue and I’m battling to get it down again but know I need to exercise to help but I can’t walk more than 20mins and can’t stand for longer then 10 minutes. Any advice really welcome as I am getting desperate.

  • Charli October 3, 2016, 7:07 am

    I have hypothyroidism and have been on Prednisolone since Oct 2015, but I slowly reduced my dose bit by bit in Aug 2016 due to picking up a lot of weight. I have always been a skinny person, I don’t eat much and I love eating fruits and healthy things like that. I went to a new doctor just the other day and when I told her that I have been taking prednisolone (prescribed by previous doctor) she was stunned and said that there’s no reason for me to be taking it as I have hypothyroidism.

    I am now off of it, but I’m still having some major withdrawal symptoms like headaches, nausea, fatigue, weak muscles etc. I just feel drained and very emotional at this point. I don’t understand why doctors just prescribe medication without informing their patients of the effects it may have on their health. When I started gaining weight I began blaming myself for not exercising, eating too much, etc.

    I did not want to look at myself in the mirror, because I felt and looked horrible. I just really wish that doctors would think before they prescribe…

  • Jenni Townsend October 17, 2016, 2:03 am

    Hi all from Brisbane Australia. My prednisone relationship started with my menopause. I was put on steroids due to inflammation in 2011. Its been a up and down rollercoaster ride ever since. Thank you all for sharing your stories.

    The problem I have now is the exhaustion of tapering of these damn things. I am tired from the moment I get out of bed. BUT after reading your posts I understand, again, that this “to the core tiredness” is part and parcel of coming down of prednisone. So, I will get there.

  • GiGi October 17, 2016, 11:38 pm

    Hi Everyone! I’ve been on 10mg up to 40mg Prednisone for 1 year (dosage depended on flares and symptoms throughout the years). My Doctor started to try tapering me down in Sept and I just started on 7 mg today. My questions are: Have any of you been on long-term “low-ish” doses of Prednisone and successfully weaned COMPLETELY off Prednisone? If so, how long did it take you to taper down (in weeks or months…) and how long was it before your withdrawal symptoms were gone?

    I know everyone is different but I want a general idea of how this goes. The first taper we tried awhile back he dropped me from 10mg to 7.5 mg. One week into that and I felt like my body was being destroyed on a molecular level. It was what Heroin withdrawal must feel like… HIDEOUS! The stomach pains were like nothing I’ve ever felt. Anyway, this time we’re decreasing by 1mg every 2-3 weeks and so far it’s been MUCH easier.

    I’ve had some chills then extreme sweats at night especially the first week each time a mg is reduced, and moodiness but still it’s going better. Any feedback on tapering after long-term use is appreciated. My Dr assured me my adrenal glands WILL kick back in and work on their own. It sucks because some of my illness symptoms are totally gone on Prednisone. The trade off are the crazy side effects and my belly looks like I’m about 5 months pregnant.

    I only gained 16 pounds BUT was very slim to begin with. I did not gain any weight until month #10 and it came on all within a 2 week span. I was horrified. :) Thanks everyone! Sending healing light and love. Lastly – has anyone had gastric issues and/or gas during their Prednisone taper? This has been going on with me since we started my taper and I didn’t expect to have that. :((

    • B October 26, 2016, 6:36 pm

      Gigi, unfortunately I’ve found that most of the people who’ve posted here tend to not come back once they’ve recovered. I am ten weeks off of a too fast taper and am no better than week one. Yes to the question regarding stomach pain and in fact I had an endoscopy yesterday. I can tell you that the slower you taper, the better. My doctor doesn’t believe he made me taper too fast. I hope your taper is going well.

  • Nicole Robinson October 26, 2016, 6:14 am

    I was prescribed prednisolone in April. I have vasculitis. I was started on 60mg and I have tapered off to 5mg which I have to take for the next 4 years. It’s been a nightmare coming down to my maintenance dose. Joint pains, nausea, headaches, moon face, shaky hands, anxiety attacks, hair loss and extreme hunger with 20lbs of extra weight. I am also having chemotherapy too. This drug saved my life and freed me from extreme pain to which I am extremely grateful but the withdrawal symptoms are dreadful and I am determined that my dosage isn’t increased so I am just taking each day as it comes.

  • jackie B October 29, 2016, 12:18 am

    Thank you so much for your sharing. I have been going through many of the same things you have mentioned, the anxiousness, depression, dizziness, pain, headaches and I came off a 12 day tapered dose a little over a month ago. I’ve been feeling bad for now for about 3 weeks. I went to ER last weekend because I thought I was having a heart attack. I never equated it to the prednisone so I never mentioned it.

    I went to my primary care with the above symptoms and I did mention that drug but she still didn’t seem to lean toward side effects of the prednisone withdrawal. However things started to come together for me thinking about a long 3 months on another steroid last year while in the hospital then home with pneumonia. I was put on all other kinds of drugs to combat the effects of the steroid like one for gastrointestinal problems, a drug to prevent bone loss to take for 6 months after completion of the steroid, calcium, stool softer which I ended up not needing.

    Visits to Ophthalmologist because of severe increased eye pressure from the drug which took 6 months to become normal again. But after this long story, I still didn’t have any of the symptoms I’m having right now from the short time on prednisone. But I recognized them all in your stories. Good luck to each of you again and thanks for helping me to realize that it is withdrawal from prednisone.

  • GiGi November 1, 2016, 9:50 pm

    Thank you everyone for the follow-up comments and answers to my questions. My Dr has me down to 7.5mg/day of Prednisone and he wants me to stay on this dose a total of 4-6 weeks before attempting to drop it by another 1mg. The closer I get down to 5mg the sloooower he is taking the wean process…which is fine with me because Prednisone withdrawals SUCK lol! However…

    I do have tons of respect for this complex drug…it saves SO many lives by reducing inflammation so the Dr’s can do what they need to do to help people feel better. It’s sooo weird how it squashes internal inflammation but blows us all up like the Stay-Puff Marshmallow Man in Ghostbusters!! Ugh!! ;o))

    Oh also… I meant to ask has anyone had EXTREME sweating (like a faucet-type sweating an MAJOR heat intolerance) either while on Prednisone and/or during the weaning process? I’ve been in surgical menopause for 7 years so already had a few hot flashes a day. But since Prednisone… Holy Hotflash Batman!! Especially since I started weaning my hair will get soaking wet along with my clothes. It’s pretty miserable.

    Dr is starting me on a low dose of Progesterone to see if that helps bring my hormones in check. Whatta mess. :)

    • GiGi November 12, 2016, 3:57 am

      Hi Everyone, Just an update: I’m still down to 7mg Prednisone, my Dr is keeping me at this dose for 4-8 weeks. So the lower the dose tapers, the slooooower my Dr is going with the dosage drop. I appreciate this because as we know withdrawals are rough! My Dr recently added 100mg Progesterone to my hormone therapy (I had a total hysterectomy 8 years ago and was only taking topical Estrogen).

      Within a week, I lost 5 pounds and my belly is not near as swollen. It’s also helped my heat intolerance ALOT. On tests my Progesterone was very low, so this was clearly contributing to my extreme heat intolerance on top of being on steroids. I’m still getting warm/hot spells but not dripping like a faucet lately…that was awful! ;o)

      Also, my chipmunk cheeks have reduced on this dose of 7mg. I’m hoping we will try 6.5mg Prednisone soon. But, I’m still living with my chronic illness symptoms and on Disability. :( Stay tuned!

  • Ana November 5, 2016, 2:28 pm

    Earlier this year I had a work injury that lead me to depend on prednisone for recovery. I was on a high dose but took it as directed- slowly increasing the dose then tapering off of it slowly. It did do its job, my injury did heal quite well but-I was a monster on this thing! I could only sleep 3 hours and had to sleep in the living room because hearing my husband breathing in his sleep drove me mad.

    Every little thing just ticked me off which was nothing like the regular me. My experience while on this horrible drug lead me to promise myself-NEVER AGAIN!!! But… last week I was diagnosed with bronchitis and doctor said prednisone was the only way to go. Desperately wanting to breath again I accepted to take a five day supply of this evil drug. Now since it was a low dose of 20 mg it wasn’t as bad this time.

    I slept somewhat normally, I wasn’t as evil and horrible as the time before and I thought- ok maybe I’ll be alright this time. I was WRONG! Dr said it was a low dose so that it wasn’t completely necessary to tamper off gradually this time. Well today is my third day off prednisone and I feel like I fell off a 500 story building. I’m tender and feel as if bruised all over.

    I’m retaining water awfully- my face is twice its size and feels asleep when I touch it. I’ve started to take ibuprofen for my pain and last night soaked in a hot bath to help. Dr says it will take my body a few days to readjust itself- hopefully a few days… withdrawing from prednisone is so horrible. I’ve told my doctor once more- NEVER AGAIN! 😭😢

  • Martin November 6, 2016, 9:38 am

    I’ve had Temporal Arteritis and have been taking Prednisolone for about 4 years at varying doses, the maximum being 100 mgms for a week. I’m tapering off but have been experiencing many of the symptoms described above. My GP has told me I’m tired because I’m now 80.

    I don’t have much confidence in his diagnosis. Who should I ask him to refer me to? A physician? A neurologist? A pharmacologist? I’d like to hear from any other TA sufferers. The cure has as many negative side effects as the illness so it’s a case of “damned if I take it, damned if I don’t”.

  • Julie November 6, 2016, 1:45 pm

    Hi, I’m back to give you an update on my tapering progress. To save you scrolling up, a summary: I was on up to 30 mg Prednisolone for 6 months for vasculitis. The cause was diagnosed as a heart tumour, which was removed in February. I tapered down to 2.5mg with no symptoms then stopped at the end of April. The moon face went after a couple of months, but my muscles became so stiff and painful I could hardly move – even getting out of bed was a challenge.

    My feet and legs swelled right up too. Late August after reading peoples’ comments here, I went back on the preds at 2.5mg and within 2 weeks my symptoms had gone. I then set about reducing more slowly, first to alternating 2.5mg and 1mg, then after a couple of weeks to 1mg daily, which is where I am now. I’ve found a routine which really helps, so I’d like to share it with you.

    First thing when the alarm goes off, even turning over to switch it off is a struggle. I call this time of day Nightmare 1. As quickly as I can, I sit up in bed and make myself a coffee from the coffee pod machine alongside my bed. I don’t know if it’s the caffeine but I feel much better and, while still stiff, I can then carefully get out of bed and dress.

    I’m now into the part of the day I call Nightmare 2. Nowhere near as bad as Nightmare 1 but not yet ready to face the day. Now I go to the gym for half an hour of gentle exercise (a mixture of treadmill, bike and cross-trainer, all done slowly) and lots of stretching. It’s probably the last thing you want to consider right now but, believe me, it works! At some point during this time, the fatigue dissipates and the aches go away, and that’s me sorted for the rest of the day.

    It’s this moment that I think about when I wake up in the morning feeling like I don’t want to get out of bed today, and that’s why I’ve labelled the phases of my day, so I can remind myself that I’m in Nightmare 1 and all I need are a coffee to get to the lesser Nightmare 2, and then exercise to achieve normality. I’m lucky that I work flexible hours, and I’ve been able to rearrange my day to accommodate my new morning routine.

    When I first started my morning gym sessions I was in tears at how little I could do and how painful it all was, but I persevered and it soon paid off. If you aren’t a gym user and don’t want to be, maybe you could swim or go to a Tai Chi class instead. The important thing is that you are doing gentle exercise that uses your whole body.

    I wrote the above a week ago, but didn’t get round to posting, and I’m pleased to report that for the last few days Nightmare 1 has not been so bad, and I can now get out of bed and move around before having my first caffeine fix. My body is adjusting, so I’m now going to start the next phase of tapering. I’ll let you know how it goes…

    • lyn November 11, 2016, 12:07 pm

      Hi Julie, I was very interested to read your comments, it’s nice to know I’m not the only one suffering. I definitely suffer with nightmare 1. I’ve been frightened to do much for fear of making the pains worse but after reading about your experience maybe I’ve got it wrong. I can’t go to the gym but I shall put my heart and soul into the housework and see how I get on.

      I find paracetamol helps with the pain but I don’t want to take them continuously. The other thing I’ve noticed is being very cold. I can have the heating on and a fire but I just can’t get warm. Have you come across this problem? Let me know how you get on, after 5 years on steroids any help will be gratefully received. Lyn

      • Julie November 28, 2016, 9:21 am

        Hi Lyn, glad to be of help – I hope your increased exercise is helping you to get mobile. Yes I did have problems with my body temperature for a while, although I was mostly suffering hot flushes, like many other people here. Are you any warmer after exercise? Maybe not exercising makes your circulation sluggish.

        BTW I decided it isn’t the caffeine that gets me out of nightmare 1, as decaf coffee works too. It must be just sitting up and having a hot drink and a gentle start to the day to get me in a positive frame of mind. I’m now on 1mg every third day and feeling great. The pains have gone, and any slight stiffness goes away when I move around.

        I’m nervous about stopping the preds completely, after my previous experience, so I’m going to gradually increase the interval between doses and aim to be off them completely by Christmas. Good luck with your recovery. Julie :-)

  • lyn November 7, 2016, 4:57 pm

    Has anyone had trouble with aching arms and wrists? I’ve been on prednisolone for about 5 years PMR, finally cutting down over a 10 month period. Not taken any for the last 10 days and feel quite rough. Bad moods, aching arms and wrists also no strength in my arms and hands. Is this normal and how long can I expect it to last?

  • Jenny November 13, 2016, 4:59 am

    I have been on 5mgs a day of prednisone for 5 years. It is part of the blend of meds I take since developing Rheumatoid Arthritis. Recently my doctor suggested I start the tapering off regime. The process is slow as I think it should be. Each month I drop 1 mg one day a week, so into my 3rd month I am down to 3 days of 4mgs. After 6 months I will be down to mgs a day instead of 5 and so on. As you can see this will take some time but that is ok with me as I realize the danger of coming off any faster.

    I do have some pains in my head like a neuralgia pain but deal with this by taking panadol. Before the RA I had an attack of polymyalgia and was on 60mgs of pred. a day. The Dr. had me come off 1 mg a week and by the time I was completely off the drug I was better and had no side effects. From what I have read here a large proportion of people have come off too fast, patience is best with this drug.

  • Vicki November 13, 2016, 9:26 pm

    I was on prednisone for 6-7 years for PMR. I had a very hard time tapering down to get off of it when my dose got low… taking 1 mg for many months, 1/2 mg for many months, 1/4 mg, etc. I was quite sensitive to very slight changes at the low dose. I stopped altogether in late February, so I’ve been off of it for 8 months.

    After stopping, I started getting some relatively minor aches — stiffness after sitting, that sort of thing. And then it got worse. Pain around the tops of my legs (hip joints?), sometimes achy calves, aching shoulders/arms. Very stiff and hobbling in the morning when I get up and after sitting for a while. Sometimes the pain in my legs wakes me up at night. I generally feel a little fatigued.

    I’ve seen my rheumatologist, and so far she doesn’t know what to think. My last ESR was 32 (I’m 60 yrs old). So not at PMR level. I’ve been wondering if this could still be prednisone withdrawal? (Any comments?) My rheum. hasn’t ruled this out, but is somewhat skeptical since it’s 8 months since I stopped. Thanks! I just don’t know what else this could be. Arthritis all over my body doesn’t make sense. She ruled out fibromyalgia.

  • Mike Genteman November 18, 2016, 1:48 am

    I’ve been on prednisone for 7 years for treatment of my RA. I take between 5 to 10 Mg daily. I gained 45 lbs in 3 years. On my 58th birthday my sister found me unconscious in my home after not making a golf date. 4 days in a coma. The hospital doc’s said viral meningitis. I had zero symptoms the previous day or the day it happened.

    My GP said it was encephalitis or something like it. The symptoms after the brain swelling, whatever caused it, we’re crippling. I was mentally retarded basically. Lost long term memories. No memories of my boys births and much more. Short term memories are non-existent. Depression, headaches, nausea, fatigue issues, blackouts, suicidal thoughts and on and on.

    Now fatty liver disease and skin issues and lower GI problems like IBS and more joint pain. I am 63 and have never thought the prednisone had anything to do with all my health problems. Thank you all for your personal experiences with this drug. I will start my own taper down at 1 Mg every 2 weeks and will post my situation. God Bless all that suffer from chemical compounds that make the drug companies super-rich. Damn them… M.G.

  • Leslie November 20, 2016, 3:35 am

    I tapering down from 15 mg a day for a year. I have RA, osteo and fibro. Holy mother of GOD! I think I have hit every stinking withdrawal symptom and then some. I can’t close my hands and they are numb; nausea; every joint and muscle in my body is at a pain level 10+; I wobble like I’m in an earthquake and can make a better milkshake than Hamilton Beach. Lovely diarrhea headaches. Frankly, I hurt so bad I nearly vomit several times a day. If they have an euthanasia clinic, I’d like to volunteer. Please pray for me as I will for all of you.

  • Ray Furbush November 25, 2016, 8:46 pm

    I have had severe facial flushing now for 2 months. Has anyone had that problem? How long did it last? I started on 60 mg prednisone thru an insurance sponsored Tel-a doc program (MISTAKE!!). By the time I saw my GP it was too late to test for the disease that was suspected: GCA-Giant Cell Arteritis. It took over 6 months a head surgery to remove an artery for testing (negative) to get off the drug.

    I am now over two months since taking prednisone and still am suffering severe facial flushing which started when reduction was @ 5 mg. Over time symptoms included severe tendon pain @ 10 mg. in the Achilles tendon area of feet requiring walking boot. Earlier symptoms included anxiety, depression, headaches, inability to climb stairs or walk any distance.

    I used to walk 8 miles a day to and from work, soon 800 feet was too much and stairs were maybe two floors at a time and I lived on the 5th floor. FINALLY: Be aware of what Drs. say and check out options first! I refused to go on prednisone again life-threatening or not. Worst experience of my life. I was a professional ski racer and have felt lots of pain… nothing was ever this miserable.

  • Kelley December 2, 2016, 9:45 pm

    I was on a very high dosage after being diagnosed with acute interstitial pneumonia. After a two week hospital stay I came home on 85 mg of prednisone. Over the course of 5 months I was weaned off the drug. About a week after I stopped I started having extreme joint pain and muscle aches and weakness all over. I am now 4 months off and am still having joint pain, muscle aches and weakness.

    I am also having swelling in my ankles and have fatigue. I wake up with stiff joints and I can barely move some mornings. If I’ve been sitting for an extended period of time I have a hard time getting moving once I get up. I sit at a desk all day for work and I’ve requested a standing desk so I can stand for short periods of the day to see if it will improve my stiffness.

    I’ve read it could take a few weeks up to a few months to recover from the withdrawal symptoms. I’m looking forward to some relief and for these symptoms to be gone.

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