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.
I want to thank all of you for taking the time to share. This disease is incomprehensible to me, having been vibrantly healthy and athletic for 78 years. Why, how did I get this? Your similar experiences have been hugely comforting as I go through the unbelievable aches, pains, fatigue, depression.
In a year and a half, I have gone from 20 mg of prednisone to 2 mg, trying to do one but mostly give in and take the second. I force myself to diet, do ballet stretches in the morning, play golf, walk the dog, so as not to lose muscle strength, but wonder if I ever will be myself again.
Your notes have helped me to realize that depression comes from the disease, as I have everything else to live for. Thank you for sharing!
I am so disheartened by all of these posts. Prednisone withdrawal is probably as bad as opiate withdrawal, I would imagine; the effect it has on the body is significant. The body has a very difficult time adjusting to the withdrawal of the drug.
The adrenal system has to reboot and it doesn’t do it easily. I feel it is prescribed with impunity, for Doctors are not very aware of the havoc it wreaks on the body. I have now been off it for 3 months and I cannot say I am out of the woods. (I was on it for 8 years).
Because of the withdrawal, I feel I have been weakened for I am less able to withstand stress or weather changes and my sleep patterns are mercurial. All I can say is that Doctors need education about this drug. Everyone is so worried about the opiate problem but my God this is the devil drug.
I guess we just have to hang in there and wait for our bodies to adjust. Good luck. You are not alone and you are not crazy! McCathryn
Thank you for this comment. I also had a weird experience of anxiety and worries that I’ve never had before. I cannot sleep like I used to. Glad to hear it’s not just me losing my mind.
It’s awful. I am now 5 days totally off a daily 10mg for the last 7 years and I hurt all over; Joints, muscles, head – it is affecting every part of my body. More physical than mental for me, although I am feeling very frustrated.
I’ve taken Prednisone before for asthma with no complications. Usually a standard 60, 50, 40, 30, 20, 20, 10 dose. Had withdrawal once but it only lasted about a week. Got a really bad reaction to poison sumac a few weeks ago. Was given a 40 mg dosepak.
I knew it wasn’t going to be enough to address the infection and argued with the doctor. He just made some snark remark about how people think Google is better then his medical education. So got to day 5 of the dosepak and no response. It had clearly failed.
Called back and got a standard 60, 50, 40, 30, 20, 20, 10, 10 dose. Got to the last 20 and suffered from extreme vomiting. It was the weekend. Called but got no answer. Made the decision to stop as vomiting every hour isn’t going to be productive and I didn’t think splitting remaining tabs would either.
About 48 hours later I paid the price. Shivering, extreme weakness, fever, joint pain, rash on arms and chest. Rash got worse over 12 hours so I went to an urgent care. I could find little guidance on treating a failed short term course other then retry taper (I am a researcher by profession).
I found a study that at least had some discussion about the problem. It was a small controlled one that found a short taper starting at 10 working down quickly was far better then the “ride it out” option. I printed it out and went to an urgent care.
The doctor was completely dismissive of me. I showed him the previous scripts I had been given and a copy of the study. He had no knowledge of how to treat Pred withdrawal. He left the exam room, came back 5 min later, and said he would give me a short taper course but was gruff about it.
So I am day 2 on a 10, 10, 10, 5, 5, 2, 1, 1/2. I started with 10 and have seen some improvement. I am going to start splitting tabs though and try to get off this devil drug as quickly as possible. Going to try 7.5 instead of 10 tomorrow. If that works I am going to do 5, 3, 1/2, 1/2, stop.
My symptoms right now are starting to clear up but I fear if I don’t taper quickly I am going to be approaching more then 21 days on Pred and my adrenal activity is going to recover slower at that point.
If a quick taper seems to clear it up with me getting to that 21 day marker, but then again all this literature that suggests tapers don’t matter for short courses doesn’t seem to be true either. Has anyone else had such an experience?
John, Yes, this was part of my issue as well, no one wanted to listen to me when I told them that a taper may have been necessary for a short dose of 4 days. They had me stop abruptly at 20 mg, down from an initial of 60 mg.
I suffered from adrenal insufficiency and everything else that comes from steroid withdrawals. Doctors were very dismissive and also accusatory, accusing me of being mental, even after I told them that I am hypersensitive to drugs (so sensitive that a Zpack is pretty much the only antibiotic that I can tolerate and 350mg of Tylenol knocks me out cold).
I absolutely was a basket case, but not for any other reason than having withdrawals. Finally, the doctors told me that all that I could do was to ride it out, eat healthy, get plenty of rest, reduce stress, and to start walking to get my adrenals to kick back in naturally, but that it may take up to a year for total recovery.
Consider that the drug is stored in fat cells, so the longer you take it, the longer it will take your body to rid itself of it – no matter the dosage amount. I personally wanted it out of my system so bad that I don’t know if I would’ve wanted to taper if it meant still having some dependency.
I’m so glad to have found a forum like this… Since being diagnosed with ILD and Sjogrens last July (I am also celiac) I have had to be placed on medication that will, eventually, be decreased however I’ll be on the medications for life as my lung disease will not heal – but the medication can stop the inflammation.
My medication is a low-dose but long term use of prednisone of 15mg and 400mg of the immunosuppressant, Plaquenil. I have 100% faith in my amazing doctor and should have listened to him – as he’s already trying to manage my disease very conservatively as he’s aware of my attitude to taking too many drugs.
However, in my wisdom, I decided to take the management of the prednisone into my own hands 6 weeks ago after being on it for 11 months as I didn’t like my puffiness and so stupidly chose vanity over healing… Sooooo I decided to cut it to 5mg for 2 weeks, then 1 x 5mg every second day. After a few weeks my lungs started seizing up and I had a dry cough.
I had zero energy and was just a whole body of aches. And just a general sense of feeling unwell. Sooo, again playing doctor, I decided to alternate 10mg one day, 5 the next and so on. Needless to say, my adrenal gland had zero chance of gradually producing its own cortisol and I’ve suffered a major flare.
Hence a visit to go and ‘fess up my antics to my doc. Following tests the news wasn’t glowing and so I’m back at 15mg a day for a month, dropping 1 mg per month for 15 months until I’m on 1 a day. Then it’s one every 2nd day for a month, then one every 3rd etc until the aim which is to simply be on 1mg a month for life.
So I accepted all this and went to fill in my script unaware that, due to the cutting down, I’d been given loads of 1mg boxes instead of the 5 or 20mg. So, not being one to read boxes, I’ve been taking only 3mg a day and, quite frankly, feeling like a severely compromised elderly, almost immobile, woman (I’m a healthy 56 years old).
Long story short – listen to your doctor and don’t play around with something like this. Believe me, when it puts your adrenal gland into crisis and you suffer a flare, life is difficult… everything is an effort and I’m finding my tolerance level in general is sub-zero. Things are irritating me that normally never would.
I have irrational anxiety attacks, massive aches everywhere. And I just want to sleep – even 10 hours of sleep leaves me feeling unrested. Don’t hate the drug – it obviously has amazing benefits; I know it’s contributing to keeping my lung disease at bay. Just treat it with respect and handle it with kid gloves… And honestly – follow the medical guidelines…
So glad I came across this article. And the posts here. After a year and 6 months I and off this devil. Been completely off for and week now. Losing the weight I gained, hopefully all 50 lbs.
I slowly dropped it, even cutting pills in half then quarters until I was every other day for the last 3 weeks. Which made it less than a mg. Still I feel many of the side effects of withdrawal. And if if push it, they get worse. I did yesterday, today I am dragging.
Take it easy on yourself. I’m just happy to be off that drug. It did do what it was supposed to. But next time if needed, it will be something else.
Been on for nearly 13 years and gradually came off last week but have many withdrawal symptoms already. Mainly body aches muscle and joints. It’s awful and depressing, but needed to take it for my disease. Hope it doesn’t last very long!
I can only empathize with all of you. While on the drug, one is uncomfortable for the reasons you have stated and withdrawal is incredibly difficult – pain, exhaustion, nausea, malaise, dizziness…all of it. Again I want to caution people that sometimes what we think of a withdrawal symptom is something else.
I have now been prednisone free for 3 months but not symptom free. For the last 2 weeks, I have had extreme nausea, dizziness and difficulty walking. After 2 visits to emergency the second hospital finally diagnosed Vertigo. I took medication for it, was giving exercises to recalibrate the cochlea and feel much much better.
So please make sure that your symptoms are from withdrawal; if you suspect anything else, please get it checked out. It is a devil drug; Doctors are not knowledgable enough about the deleterious effects of this drug. Yes, it can be a miracle but with a very dark side. Good luck. Hang in there, it will get better. McCathryn
Thank you for you concern. You are right – doctors are very careless about this withdrawal. I took for 2 and half years and after stopping that I’m facing extreme withdrawal symptoms. I never felt this bad in my life. Now my so called doctor is not agreeing that these symptoms are due to withdrawal.
She told me to taper as follows: 10 mg for 1 week, 5 mg for 1 week and stop. She is so stupid to taper too quickly. Now she is suggesting me to get admitted to her suggested hospital to get treated because they charge too much and she’ll get cut. These doctors are definitely going to hell.
I was placed on prednisone for a short period to combat inflammation for colitis. First 2 weeks 20mg per day, 15 mg for 1 week, 10 mg for 1 week, finishing off with 5 mg for a week. I should mention that previously, I have been blessed with good health, very active, with lots of energy.
I stopped taking this drug 2 days ago. Nightmare…dizziness, nausea, extreme fatigue, headaches, shortness of breath, rash on my arm…coughing. While I was only on prednisone a short time, it’s withdrawal impact was severe.
While taking the drug, like others on this site, I had some difficulty sleeping, or staying asleep… and there is no question that it effects you mentally… complete with intensity in feelings and short temper!
I’ve spent the last 2 days in bed… leg cramps, joint pain, body aches, malaise, and sheer exhaustion. I will never take this drug again! This drug was worse than my malady, and completely turned my life upside down.
I would only take if absolutely necessary and for those of you still taking it, do what you can to stop taking it as soon as possible as I was on it such a short and its impact was still horrendous! Wishing everyone well, hang in there, a better day is coming!
Hi! My case is very similar to yours. Hospitalized in April for colitis caused by Macrobid (UTI antibiotic prescribed by doctor’s mistake). Always active and healthy. On prednisone for about two months tapering off.
I started yoga and going back to gym while still weak and fatigued – it helped a lot. I have been off of it for two weeks now and I am experiencing anxiety and depression (no history and no cause for either!) I believe it’s the prednisone. Try yoga, hope it helps. Feel great soon!
Just completed a 7 day course of 40 mg prednisone for hip and upper leg pain due to a lateral extrusion of a lumbar disc. I had never been on steroids before and was told to just stop it after 7 days. My last dose was 2 days ago and since then I have noticed weakness in my arms and legs, I can still function fine but wondered if there was a problem.
I do feel fatigue but my body also feels “revved up” – maybe described as anxiety by some people. I didn’t think a “taper” was necessary after such a short course but wasn’t sure if something was wrong. After reading about steroids and side effects of withdrawal I think what I am feeling is just from stopping the steroids.
It’s not severe and I can manage if I know these symptoms will just go away with time. I just thought I would post in case someone else experienced the same and could respond to how long the symptoms lasted. Sometimes it is nice to know this is not uncommon and can be expected.
I am sooooo achey and fatigued, symptoms which definitely coincided with the end of my taper a few weeks ago but my concern is that I was only on steroids for a total of 6 months (100mg IV in hospital for a week), then tapered 60mg, 40, 30 per week, then 20mg for four weeks, then 15mg, 12.5, 10, 7.5, 5, 2.5 for a week each.
Had to do this twice as I had a flare up of disease). Would I have adrenal fatigue from this short time frame and proper taper? Or has stopping the steroids unmasked something else like fibromyalgia or MS? Love to hear what you all think.
I wish I had good news for everyone. The symptoms and varied and painful. What I would caution is to be careful not to attribute all malaise to the prednisone withdrawal. The symptoms could mask other conditions.
I assumed my constant nausea was directly due to the prednisone withdrawal. This may not be the case and yet I didn’t investigate it and should have! Everyone should have their adrenal glands and hormonal system checked… check the cortisol levels and also there are other blood tests to check that all is working properly.
It is nightmare. I took my last pill the early part of April. Hang in here. If you are able to remain prednisone free then pat yourself on the back!
Yes, it can absolutely impact your adrenals no matter how short of a time you have been on them if you are hyper sensitive to the drug. I was prescribed prednisone for inflammation in my lungs due to mild smoke inhalation almost one year ago.
I was to take it for 6 days… I didn’t make it past 4, before I had to stop due to the side effects that NO ONE told me about prior to prescribing, even though I explicitly explained that I am hyper-sensitive to all drugs. Needless to say, it has been a rough road this entire year.
I experienced adrenal insufficiency but because doctors are so arrogant, they refused to believe that the short stint could’ve possible caused insufficiency. I had to FORCE them to conduct blood tests to confirm and it took several doctors to do so.
Knowing the side effects, they were still ready to write it off as purely psychological. Yes, prednisone impacts you psychologically and mentally so anxiety and such is normal. I was finally told that my thoughts were confirmed as adrenal insufficiency but that the only thing that I could do was to eat very healthy, take supplements and exercise to force my adrenals to kick in naturally.
I was told that it would take a minimum of a year to feel 100% normal again, as prednisone is stored in fat cells. This was told by a neurologist, as I saw one due to numbness in my extremities, several months after taking the prednisone.
My advice is simply to prepare to weather the storm, eat as healthy as possible, get plenty of rest and remain as stress free as possible so that your body can heal.
Hello Sophie. Your withdrawal symptoms are happening because you’ve come off the steroids too quickly. The same thing happened to me last year. I’d been on 70 mg initially then tapered down to 5mg then nothing over a three month period. It left me seriously poorly: no appetite, insomnia, terrible aching legs, blood pressure so low I kept almost passing out, severe tiredness.
Plus my original condition – pneumonia brought on by eosinophilia after stem cell transplant – came back. A year later I’m still on steroids and I’ve learnt to come off them slowly (doctors are useless and want you to come off them far too quickly). I’d suggest, if you’re still suffering, see your doctor with a view to being out back on a low dose of steroids then tapering off very slowly, which is what I did.
Once I was out back on a low dose I felt instantly better. I’m now on 7mg for three weeks, then 7/6 mg every other day for three weeks and so on… Sorry for such a long post but I’d like to help as I’ve really suffered due to tapering too fast. I’ve learnt the hard way!!
P.S. I’d been on the steroids for an even shorter period than you Sophie. I was only on them for a total of three months and suffered terrible withdrawal symptoms so please don’t worry that it’s masking something else. It’s the wretched steroids.
I went on Prednisone for PMR 10 years ago. I quickly tapered down to 5 mg and it did the trick. When all the symptoms went away except my right hip pain, I went to 3 mg. I couldn’t go below that. I tried several times, but ended up limping badly and went back on it.
That was 8 years ago. When I moved to my new state, my two new physicians (GP and Rheumatologist) were horrified that I had been on low-dose Pred. for 8 years. They both refused to prescribe any more, except for the doses used to taper me to zero, very slowly. I have been off Pred. for 6 months.
My body aches still, although not like it did for the month after quitting. If I sit for more than 20 minutes, all my joints stiffen up. I am using Gabapentin to sleep due to leg pain at night. In short, after 6 mos., I still have withdrawal pain.
My rheumatologist offered a cortisol test, but what is the use? If my cortisol levels never get back to “normal”, she still won’t put me back on Pred. I am 69 and move like I am 89 – at least for the first 5 minutes every time I get up from a chair.
What to do? I have no idea. Perhaps I should get the test just to see if that is the underlying cause. My rheumatologist claims that I have OA. The symptoms just don’t line up, in my estimation, but it is an easy out for her. “Take Tylenol”. Might as well take M&Ms.
Andrea, I say why not have the cortisol test so that you can get a better understanding of what is or isn’t related to long term prednisone use? Then try some natural therapy.
I have been on prednisone for over a year and a half for severe asthma brought on by a wicked bacterial infection in my sinuses. At first I tried to quit when I was around 10 mg, that was terrible. Asthma came back like gangbusters. Sinuses became swollen as well. So back up to 50 mg.
After sinus surgery I thought I could try again and yes, very bad side effects including severe asthma. A good friend warned me to taper very slowly so for the last eight months I weaned myself down to 7mg. I felt pretty good, better than I had in months. Trying to get below 7 has been very tough.
Lots of wheezing, congestion and aches and muscle cramps. Managed to get down to 2 and felt not too bad so I started on every other day. Some coughing and wheezing but not too serious. Last week I stopped and after four days the crap hit the fan. Lots of breathing problems, lots of muscle pain.
So sadly I am going back on to 5 mg to see if the coughing stops. This drug saved my life but now I want to be free of it. My next plan is to reduce by 1/2 mg every two months and maybe be free of it in another year, but I am worried that another year will only increase my dependency. What a trap this is.
Been on prednisone for 2 years and been off them just over 3 weeks. I started on 30mg for C.O.P (Cryptogenic Organizing Pneumonia) without them I would have died. I’m just going through the withdrawal symptoms and it’s painful most days, at the moment I’m finding it difficult to walk, along with all the other side effects, except dizziness (I were already dizzy).
The good thing is I’ve been on this medication before, twice, the C.O.P came back and could again (fingers crossed it won’t). I remember going through the withdrawal both times, so in some ways I was prepared but it doesn’t make it any less painful. I do know there’s an end to it though.
If I remember rightly it took about 3 months and then one morning I walked downstairs and realized I’d used both legs instead of one step at a time and no pain. What a relief!!! There is light at the end of the tunnel… just got to hang on in there.
My consultant tapered me slowly over months down to 5mg. Then 4mg for a month, then 3 down to one, then off. Here’s hoping it doesn’t come back. I wish you all well and hope each and everyone of you manage to cope with it. Margaret
Margaret, I too, have COP and an interstitial lung disease. I was in the hospital 10 days. Was put on intravenous high dosage of Prednisone and sent home on pill form. After 1 month at home started weaning off at 5 mg per week. I’ve been off 1 week.
I’ve had every side effect mentioned here and lost 27 lbs in about one month. Lost muscle and could hardly walk. My knees buckled frequently and I have fallen at least 5 times. Shakiness, nausea, headaches, anxiety and edema have been particularly bad.
At times I thought I just could not stand it any longer. I was told this was the only way I could get well. No one has mentioned that Prednisone skyrockets the blood glucose numbers. I was not diabetic when I started but they had to put me on Metformin 2000 mg a day to control my numbers.
To say the least, Metformin has as many side effects as Prednisone. Now that I am off Prednisone, my Metformin was lowered to 1000 mg a day. I”m hoping that it will drop on down, but it hasn’t yet.
Have you or anyone else experienced this horrible side effect of induced diabetes? I’m also praying that I don’t relapse. So good to know that I am not alone in this madness. Thanks. Jan
Thank you Margaret. You are a life saver. Only on your comment I got my answer. I also took this Pred for 2 and half years now. I’m suffering with withdrawal due to my doctor’s stupidness of stopping too quickly. I’m so worried that when it is going to end. But you gave me hope. Thank you, thank you very much.
I was given prednisone 20 mg twice a day for a total of 40 mg per day. By day 3 I was red all over like I had a sunburn, I stopped taking it. Big mistake I guess. I couldn’t get out of bed for days, dizzy, disoriented, shortness of breath and so tired I couldn’t hold my head up, confused.
This is a horrible drug and I will never ever take it again. I wasn’t told anything about its side effects or tampering off. Needless to say, my doctor is no longer, I’m done. When I called the office to tell them I was really sick from it – they said it would be out of my system in a day or two.
No way this stuff is out. Been off it 15 days and still feel bad. And it took them 3 days to call me back! I have had a few good days and then it starts all over again. Scary stuff. I just hope it hasn’t done something that can’t be undone or will heal in time. Every day is a struggle.
WOW. So grateful to have come across this article and love all of the stories, strength and symptoms shared. Everyone is truly amazing! Give yourselves some credit <3. My Prednisone story – I've been on and off it for around 12 years, I was diagnosed with Lupus at the young age of 17.
I have definitely had my fair share with this drug so I thought I knew how to handle it… I started taking prednisone daily, regularly in April 2017, I was on it for one whole calendar year. Beginning at 60, for a while at 30, 20, 10. The side effects became so horrendous (hair thinning, acne all over ) and I was still in pain so I didn't even think it was working.
I asked my doctor to come off it, and we tapered off in only 4 weeks, down to 5mg then 2.5mg. Now that I've researched and read a lot of stories here.. DO NOT DO THIS!!!! Please. Don't. Looking back this was really silly on both our parts, and should have tapered much much slower.
I just couldn't handle the physical side effects on top of all the pain still. Presently, I've made it to week 8 off of that devil drug so I couldn't imagine going back on it because I BELIEVE our bodies can heal, and with everyones kind reassurance, thank you.
Symptoms – fatigue, joint pain, edema in limbs, numbing extremities, nerve pain? Dropped 30 pounds. Yeah life is very hard right now. If it weren't for my mother I wouldn't be anywhere near functioning considering I need assistance with EVERYTHING at this time.
I can offer this piece of advice for anyone in pain, 16-32oz of celery juice every morning on an empty stomach, THIS has helped me with inflammation tremendously. I still ache and question life at this fragile time but the celery has so many amazing benefits and I have truly felt a difference. Try. It.
Rock on everyone, we got this! Namaste
My hubby was on prednisone for 5 months for kidney failure and tapered from 60mg to 5mg reducing 5mg every week over 12 weeks. Since Tue he has suffered from flu like symptoms quite badly. We spoke to his consultant on Thursday and he was prescribed a cortisone tablet to take for 2 days but also to go back on 5mg of steroid.
He is now on day 5 of diarrhea despite using Imodium. As all fluids are running right through him he is starting to become dehydrated which in turn could lead to complications with his kidneys. Much of the other symptoms have passed except the fatigue and the diarrhea so I would be grateful for any advice on how to stop this.
Only on 30mg one week… so far cleared problem taken for but, yes, agree – side effects and coming off, horrible, and don’t know if I would ever want to take again! No one warns you of withdrawal!
Just suggestion to try for diarrhea… juice of about three limes, (no water) with pinch or two of coarse salt – pretend you’re having a tequila shooter! Was suggested by a Central American friend as natural remedy – surprisingly worked!
Calmed stomach right down! Might have to take a few ‘doses’ over day but, replaces sodium and at least can’t hurt. Drink lots of water later. Hope it helps!
My husband has been off prednisone for couple weeks now.. Was on for PMR for about 18 months and blood work shows he no longer has PMR. He tapered from 10 mg to l mg very slowly. He is suffering from hands and feet swelling, stiffness and aching all over.
Seems the swelling is not part of anyone else’s withdrawal? Also very weak and not able to do his construction work anymore… too painful in joints. Also on blood thinner for heart condition so cannot take anything but Tylenol and that is doing nothing. He turned 68 today.
Hi Rita, I was on it almost three years. I’ve been off it 6 weeks now. The weakness is a smidge better but not much. The pain, aching, especially legs, arms and neck is unbearable. I feel like a 2×4 most the time, exhausting trying to move. I can’t take any NSAIDs so that’s out.
But I read about your husbands swelling, which prednisone controls. Then it dawned on me ginger can help with that too so I’m going to drink more ginger tea – that’s what got me thru the nausea. That part comes and goes but not as bad now. Depression still not letting up.
I hate this, I’m not a daily depressed person for no reason. So I reread the above article and it says all this will pass when our adrenals work again. I don’t know if ginger is ok with blood thinners but maybe that would be an option.
If it’s any help, my feet swell and I get all the aches and pains as well in all my joints, but it does pass. I’m 68 too. Hope he’s doing better now…
I am tapering down from 17 mg for PMR. Currently at 14. Going very slowly, last time was too quick and I was crashing. Even at a decrease of 1.5 mg per month I am still feeling it. Can’t wait to get off this drug, and will NEVER take it again. Side effects are just not worth the struggle to get off it.
Rita has he been checked for rheumatoid arthritis (RA)? I have PMR and also had issues with hands and feet swelling. Lab test determined that I also have RA. I am being treated for it now with methotrexate and am being weaned off of the prednisone and down to 5mg now with no more swelling of my hands and feet. You may want to check into it.
Hi all, I’m sorry so many are suffering but glad I’ve got good company. On 20mg three years, what I had to handle was over, physically, so I wanted off this drug. I weaned slower than my doc wanted me to.
Started in the fall, I’ve been clean for 4 weeks today! The horrific pain has subsided, that was during the last few months of tapering. I literally couldn’t move my covers off me during the night.
My legs are still rather weak and in severe pain and my neck, can not get comfortable sleeping because of my neck pain. The rage comes and goes, I’m a calm person so this isn’t going over well and today the depression is extremely bad.
Tried planting some seeds in garden, this should make me happy but it didn’t work and I became exhausted – and such a little chore I was doing. The nausea continues but curious do any of you have bloating? This is new for me, never had that problem before. Hate this doom n gloom feeling, finally warm weather and I don’t even want to be outside. :-(
And for those of you with nausea, ginger tea and honey really does help, especially at bedtime. I make my own, it’s real simple, heaven knows I couldn’t do it if it weren’t! Oh and way back when I was young, I was on high dose for 9 months – saved my life.
But I do remember it taking a year before I was fully functioning. I just don’t remember how long before I was somewhat functioning. I remember sleeping a lot too. So I know it can be done, if only I could remember what all I went thru as far as the torture of my body trying to heal itself
I’m on prednisone one year now. Started At 40 mg reducing it on and off. March and April I was down to 5mg. Then for one month I went to 2.5 mg every day and than 2.5 every other day. May 14 I stopped taking Prednisone.
All hell broke loose muscle pain, joint paint loss of appetite, nausea and also fever. After suffering for 4 days I’m back on prednisone but only 1.25 mg every day. Not sure if this will work? If this will help slower reduction over longer period of time is my plan.
I was put on Prednisone (60 mg per day for 2 weeks) after having the flu/virus that went to my ear which caused hearing loss/tinnitus. Towards the end of the 2 weeks, I missed a half of dose and while at work I had an extreme nervousness, anxiety, cracked out feeling.
I couldn’t focus and it triggered a fight or flight feeling. In addition, I started to have spots in my vision which turned out to be caused by an abundance of cortisol produced from the Prednisone.
The visual spots have mostly gone away, however the anxiety and nervousness feelings still come and go even now 2 moths later…
It’s been a week since I finished my second round of prednisone. Each round was 10 days. My withdrawal symptoms are happening almost every day, sometimes twice. I get the shakes, my teeth uncontrollably chatter, I can’t form words, just yell and grunt. It looks as if I’m having a seizure.
But I’m not. Sometimes I even get paralyzed. Can’t swallow water, can’t hold arms or head up. It’s so scary. I get confused. And now I have hives on both hands, going up my arms.
How do I stop this? This happened years ago. And I swore I would never take prednisone again. But I have such bad asthma, I had no choice. I just want my body to be normal again. When will this stop? What kind of doctor specializes in prednisone withdrawals?
I don’t think there are MD’s who specialize in withdrawal but I don’t know, talk to a rheumatologist and/or pharmacist. I am sorry you are suffering so much. I think the symptoms you are describing are very serious. Don’t leave it.
I was on this infernal drug for three short courses for a month on my own. The first course was 4 days for 25 mg with a sharp cancellation. The second course in a week was such – 40mg-40mg-30mg-20mg-10mg. Cancel. There were no special effects.
But a week later I took another short course with higher doses – 55mg-55-50-30-10. I felt very badly, insomnia, anxiety, irritation, tachycardia. I canceled the drug and it was quite dramatic. Now I have a backache in the kidney area, weakness, anxiety, depression, pain in the forehead. That’s horrible.
Hello All, I have been on Prednisone for about 1 year for severe arthritis. I have been tapering from 20mg, 1mg per week. When I hit 10mg I started taking thyroid supplements based on blood work showing low iodine levels. I felt wonderful, no pain for weeks.
Then I hit 8mg the pain returned along with nausea, vomiting and other unpleasant gastro issues. Is this from tapering? Will this stop when I stop taking Prednisone or will all pain come back because I am not addressing inflammation?
I am taking curcumin supplements, Tylenol for pain and also LDN 4.5mg for pain, can’t take NSAIDs. Any thoughts, ideas? Hope you all feel stronger each day! Thanks, Penny
1 mg a week is very fast… too quickly I would say. When I started reducing, it was 1 mg every 7 weeks until I hit 1 mg. Then I stayed on that for 2 months for I just could not go further. Eventually it was 7 weeks on 1/2 then 7 weeks getting off that and I still feel dreadful.
I have been prednisone free for 4 weeks. The nausea and pain are from the tapering and yes the pain will probably come back. I am dealing with bad pain now, but the nausea has abated.
I had bad nausea for 3 months and lost 10-15 pounds. Unfortunately, this withdrawal has to be endured and it is the toughest I have ever done. Good Luck. Cathryn
I’ve been on prednisone 17 months (up to 60mg daily) and took my last 2.5 mg dose 3 days ago. I’m experiencing joint and muscle pain, itching, sleeplessness, depression and extreme fatigue.
Also loss of appetite and occasional mild nausea. I’m happy to know that these are side effects that will subside eventually. In the meantime I’m determined to stay off this stuff and will soldier on.
I’ve been taking a bovine adrenal supplement (50 mg/day) as prescribed by my naturopath during the steroid regime. Not noticing that it helps much but don’t want to stop in case things get worse! But it might help someone out there to know about it.
Thanks to all.
How Cheryl, I wish I could tell you that there is a quick fix for this poison. I have been off the drug for one month after having taken it for 8 years. I am still suffering painful symptoms. I am so fed up. Keep your chin up . It can’t be bad forever; so few manage the complete withdrawal but I am determined. Cathryn
My sister was one Prednisone for only two months, and had to have a hip replacement until a geneticist in Ohio showed that she had a DNA marker for Prednisone’s effect on on her cartilage. This medication was prescribed to me for five days for bronchitis.
I told the Doctor about it’s affect on our family. He said that five days would not be a problem. Well, it is and continues to be a problem. Three weeks after taking it I feel like I have motion sickness. I have muscles that cramp and feel like someone is taking a knife and slicing them.
I also feel like I have cement bags for legs. I sometimes have trouble breathing and I am scared because I have diabetes (am afraid of losing a leg)and have already had a heart attack. I am sixty years old, my husband has cancer and we are raising a three-year-old grandson.
I am so angry that the Doctor didn’t listen to me and I am mad at myself for taking it. Do not take this medication is a duel with the devil that you might be fighting for a long time and one that a person might lose. I hope I get over it.
I took it for five days, did not taper (as per Dr. instructions) and am still suffering the effects, that seem to change daily, three weeks later. The motion sickness started three days ago, groin pain started five days ago, and leg pain has been ongoing since the last day I took the medication.
Good luck and I hope everyone gets past this. There should be a class-action suit against the use of this drug for anything but the most sever illnesses, then proceed only with the utmost caution.
I hope you get better, I am in the same boat. Only took it 3 days, 40 mg per day, which is a rather large dose. I too am angry with my doctor for not telling me about the possible side effects, or to taper off slowly. I quit abruptly when I turned red all over and started feeling bad. BIG mistake.
But I can’t take it back and I will just have to ride this out as do most. I did have an ER nurse tell me to take benadryl and Pepcid every 4 hours as that is what they would give me if I went to the ER. It does help so you might try that.
I didn’t know it but she said Pepcid has a steroid in it and will help with the recovery and withdraw symptoms. Like I said, it does help. Makes me a little sleepy but at least I can function better on that combination. Hoping you get better.
Hi. That’s a huge drop at once, many of us taper .5 mgs at a time.
I have had a very bad reaction to cortisone in the past. On 4/19/18, I was adamant about this when my dermatologist prescribed Prednisone and I questioned him as well as the pharmacist. I decided it may be worth trying, just to stop the intense itching from the rash on my back. I was to start with 12 – 5mg pills the first two days, then one less pill every second day.
By the third day I was ready to get off them. Probably should have done it by myself then. Finally called the Dr on the 7th day and insisted on getting off them. I was supposed to take 8 pills for the next two days, but was told to reduce that to 4 that day, two the next and one the final day to wean off them.
This was prescribed without any blood work, etc, and no advice was given on how to keep potassium levels up, etc. Side effects are beyond nasty, so much so, in fact, that I keep wondering why the FDA approves drugs like this!
Heart palpitations, my insides were literally jumping around 24/7, headache, nausea, very weak, shaky and sweating, sleeping only a few hours a night and urinating 3 or 4 times during the night and every hour or two during the day.
I am not diabetic, nor have I ever had elevated glucose readings. So…today is my third day off these demon pills. I was up most of the night with muscle spasms in my feet, calves, inner thighs and lower abdominals as well as in my back and neck, most likely an electrolyte imbalance caused by the Prednisone.
The only way to stop the muscle spasms was tonic water with quinine. The pain was intense, to say the least. My stomach seems to have settled today with almost no jumping around, headache is gone, nausea is gone, minimal sweating, but still feeling very weak, tired and sluggish.
BTW, I was told that MOST people, as in 99% of people, do NOT have side effects. Couldn’t prove it by me! Wishing you all a speedy recovery!
Started Prednisone @ 15 mg Jun 2017 to treat PMR, decrease by 2.5 mg for 2 months, then decrease by 1 mg every month until this April, now will be decreasing by .5 mg for the next few months until we get to 0.
Began to notice unusual / unexplained soreness and stiffness at about 3 mg. Getting a little worse each month. Nothing severe, at least at this point, and nowhere near the pains I was feeling when the PMR was in full attack (SED rate of 111).
Is this the beginning of expected steroid withdrawal and will this continue for sometime after the last prednisone is taken in about 2 months? Since the process of weaning off has taken about a year, should I expect similar time for the adrenal glands kick back in fully?
Hi. That’s been my experience. On for 1 year for PMR, off prednisone now for 6 weeks. Have good days and bad but feel like the symptoms- nausea, anxiety, joint weirdness, are subsiding some. Hang in there!
I have had PMA for about 4 years and have reduced my Pred at least 3/4 times but soon went back on it as I did not feel in control of my body along with the aches and pains in every muscle. Well once again I have weaned myself of Pred very slowly and it has taken me a full year.
My last tablet of 1mg was on the 11 March 2018. My mobility is very poor and it hurts to walk around. I can’t get up very well from a sitting position. My neck, shoulders and back are so painful. I am feel absolutely fatigued all the time.
My husband has been wonderful and has been so supportive. Every little job has felt like one big chore. On top of all this I have an overactive bladder with lots of pain. Also a hiatus hernia. After reading lots of articles about the side effects of steroids I now feel certain that they have contributed to these problems.
I have an appointment with my GP in just over a weeks time and I feel so tempted to give in and go back on steroids. I know I will be like my normal self after a few days of taking them. However after reading all the comments on this forum I am going to try and resist.
My GP knows how much I hate them but does not suggest an alternative. She just says that steroids are the only thing that works for PMA. Does anyone have any other other suggestions that may work?
I have just started taking a variety of vitamins but don’t really feel really confident that they will work. All suggestions gratefully received folks!
I wish I could offer the magic bullet and say, once you are off this devil drug, all will be fine. Like you, I struggle with the promise of pain-free day and say to myself, “it is worth the incredibly difficult side effects?” I cannot say, but will persist as long as I can.
It makes me very angry that these drugs are prescribed so wantonly because the body struggles so hard to get over it. The interesting fact is that your cortisol level is probably fine and your adrenal system is probably working normally. However, the body physically craves the drug, in spite of this.
What we need to hear is that those of us who have gotten off the drug and are finally symptom free, must communicate this to this site so we have hope. Day by day!
I, too, was on Prednisone for PMR (and osteoarthritis, so my rheumatologist tells me). I cannot tolerate any of the many prescription medications out there for arthritis…the only thing that worked was Prednisone. But my rheumatologist wanted me off “that nasty Prednisone” so I tapered down from 5 mg (which barely held me from abject pain).
My last (1 mg) dose was one week ago, after three years of being on Prednisone therapy. What a wretched week it has been…and I’m sure I have a few more to go! Everything from horrid all-body pain, weakness, and stiffness to upset stomach; lower digestive issues; headaches; dizziness; general tiredness; and sleeplessness have plagued me.
But, my PCP tells me (as of yesterday’s visit) that this is pretty normal for long-time Prednisone users, due to the adrenals being “upset.” I will, therefore, get through this awful experience with the attitude that I will NEVER take Prednisone again! In the meanwhile, I’m finding OTC items such as Excedrin for Migraines work really well to hold the pain…or even good ole aspirin or Tylenol for Arthritis.
For sleep, I find that a good dose (2 pills) of Tylenol PM really knocks me out and I can get several hours of needed sleep. I am delighted to find this website and read all the similar stories to mine. At least I know that I have plenty of company in my misery!
It’s amazing to me how many people are suffering from withdrawal symptoms. It does help to know that I am not alone. I take pain meds but they don’t help much. It’s been 10 days and I am still having complete body pain.
I don’t want to ever use this devil drug again. Does anyone know someone who’s succeeded and is finally symptom free?
The struggle is real. I have been on this drug since December of 2017 at 20mg/day, and now I have been tapering for the last three weeks and it is the worst feeling ever. I was a smoker for several years and quitting smoking was by far easier. The pain is back, the tiredness renders me completely ineffective at work.
I feel like I can sleep for days on end. I am moody, achy, tired, headaches, etc. I tried explaining this to my Rheumatologist, and he treats me like I am being over sensitive. And he continues to tell me that I wasn’t on a high enough dose for long enough to feel like this. In any case, a colleague at work has been on a low dose (2.5mg/day) for years because he could never wean off of it.
I am to be done taking it completely by next Friday (4/27/18) and I will be sure to report back how I feel. Most people that I have exchanged comments with online said it will take about a month to feel “normal” again, provided that the other medications do what they should. Best wishes.
I have been on Prednisone for a year and a half for PMR, I so want to be off. After 3 attempts to ween off I would get to 3mgs and flare up again. So far I have been okay on 3 mgs. Going down to 2 mgs tomorrow but I have been having awful headaches.
I cannot have NSAIDS or Motrin due to Kidney disease. I’m hoping for this to be over. I also have not handled the weight gain very well. I just want to be off these steroids.
Even though you have been on 3 mg for a while, do you still have the weight gain? Do you also have weight gain in your face/neck? I started on 80mg in Nov and have been able to taper down to 17.5mg currently, but I have not lost any of the weight yet. I was hoping the fluid retention and weight gain would go away when I got below 15mg per day.
The weight won’t start reducing until around 3 mgs. Also the nausea started at 3 mgs, for me; naturally you will lose weight because you can’t eat. Please do it slowly or there will be a rebound effect. There are clinics for opiate withdrawal but not for prednisone. There should be!!!
You might want to reduce by 1/2 mg at this stage. It means more slowly of course but it will make the withdrawal easier! Cathryn
Delighted to find this site. Was on prednisone for a year for PMR. After 6 months, the side effects started – severe nausea, dry heaves, terrible anxiety. Tapered off by the end of last month, and now struggling with withdrawal, esp. anxiety.
My meds manage it but starting about 1 am, I am up and down due to the anxiety. The meds help a little but not enough to put me back to sleep. I try to stay positive but it’s a challenge. Given my extreme symptoms, going to ask my GP for a referral to an endocrinologist. Thanks for listening.
I was put on 50mg of prednisone (10 days no tapering) for nasal polyps. My last dose was March 16th. I have not slept since March 20th and today is April 11th. I requested Clonazepam 0.25 and I was also prescribed 7.5 to 15 mg of Mirtazapine which I am holding off taking.
I take the Clonazepam when my anxiety is so bad that I can’t stand it. I was on Mirtazapine 10 years ago for insomnia it took forever to help get me to sleep and it also created a lot of lower back pain. My doctor and pharmacist feel certain that my insomnia is a result of the prednisone.
I am not sleeping at all. I really need some positive reinforcement from people out there who have gone weeks without no sleep because of prednisone. They say they don’t taper the prednisone if a patient is taking it less than 2 weeks but I think if you are put on a high dose such as 50 mg, the doc should taper.
Has anyone else gone without sleep for weeks like me? And how long was it before you returned to normal? Any positive thoughts would be helpful to me. Thank you.
Mary: I would have to agree with your pharmacist and doctor that the Prednisone is probably causing your insomnia as I barely slept 6 hours a night when I was on the higher dosage. Some nights, in order to get to sleep, I would drink some Sleepy Time Tea which sorta helped me unwind and fall asleep.
My son, who is a substance abuse therapist, recommended the tea as that is what they give people who are getting weaned off of drugs when they can’t sleep. Drinking the tea helped most nights and some other nights it took me a little bit longer. I also found that going for a walk outside and doing some yoga sometimes helped too.
It seemed that the more I tired myself out physically, the easier it was to calm down mentally and get to sleep. It does sound like the Prednisone is still playing havoc with your sleep, however; I do know that it does take time to get it all out of your system especially at such a high dosage.
I wonder if the doctor would allow you to take something a little bit safer like Melatonin if nothing else works? Just a thought. Take care. :)
Mary, I am sorry to hear about your insomnia and yes, the prednisone is the culprit. I have never been a good sleeper but once on prednisone, I was wired so tightly. This was 8 years ago. My Doctor put me on Ativan and no I am not advising it, for now I am also going through the withdrawing of Ativan.
It will take 6 weeks and it is not bad at all compared to the prednisone withdrawal. It was great at the time for like you I was a zombie. I was so relieved to have any sleep. Yes, you should taper from 50 mgs, but if you are in the US, the Doctors don’t usually taper for a 10 day usage. In Canada they do. I wish you luck, for it is difficult journey.
Last fall, I stopped sleeping for a few months due to the prednisone. I developed terrible anxiety and barely hung on. Finally my GP described doxepin for sleeping, which helps. My anxiety kicks in about 1 am and meds helps some but I am up and down til I finally get up.
I tapered off at the end of last month and withdrawal for me has been as bad as the side effects, esp. the anxiety.
Hi Mary. I was also given 50mg prednisone for about 8 days for asthma problems no taper. I’ve been off since April 4th today is May 2nd and I’m still having side effects. Can’t sleep, anxiety, fatigue, weakness. My blood pressure keeps going up and down and I have horrible heartburn. Can you tell me how you feel now and if any symptoms have subsided? Thank you!
Mary: Your story sounds alot like mine. How are you feeling now? I’m on week 5 since my last dose of prednisone and still having severe fatigue & heartburn.
Hello Mary. I’m sorry to hear about your insomnia. I totally sympathise as the same thing happened to me when my consultant took me off prednisolone too quickly last year. No one told me how serious the withdrawal symptoms were and I did not get a wink of sleep for two months.
Even sleeping pills did not work plus my legs drove me crazy at night as they ached so much. Plus I had restless leg syndrome which was awful. My condition returned (eosinophilic pneumonia) whilst off the steroids and my consultant our me back on 10mg.
Instantly my aches went and I’ve had a reasonably good night’s sleep ever since. I think you, like myself, came off them far too quickly hence the insomnia. Being put back on a low dose then tapering again super slowly should help with the insomnia.
Like you I thought it would improve in time but unfortunately it didn’t and I really suffered. I’m currently on 7mg prednisolone and am on a 1mg taper every six weeks; I’m still sleeping ok. I hope this helps. Take care.
I was on 20 mg Prednisolone for autoimmune disease 15 months back. Started withdrawing 5 months back with 2.5 mg less every month. No problem! But when I was on 2.5 mg a few days back I had body aches, join pain, swelling, fatigue, weakness. Could not understand what was happening. Now I know and am prepared…
What a relief to find this site; “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.”
I had no guidelines before or after a 2 year+ experience on prednisone and a rheumatologist who kept telling me to “see your primary doctor” when I tried to ask about symptoms that are listed in the information paper that comes with the drug.
My PCP does not use this drug and could not answer my questions. Is this routine? I am 1 month out from the taper, and still having symptoms. So grateful for you sharing your own experiences.
I was on Prednisone for 8 years (PMR) and chronic pain issues. I started last April 2017 to taper from 7 mgs. It has been unmitigated hell. Monday April 9,2018 will be my last dose… still suffering joint pain, nausea, lack of appetite, malaise, stiffness, weight loss.
I am determined to get over this but it’s the hardest thing I have ever done. I have had over 20 surgeries so I am not unfamiliar with pain, prednisone is a devil drug. If I didn’t have an amazing husband to help me cope, I don’t think I could have done it. Good luck to you all. Cathryn
Hang in there. I get it. I am 3 weeks post prednisone and it’s been very challenging, esp for me the anxiety.
I’m very thankful to have found this article and comments! I’ve been tapering after about 1 1/2 years of Prednisone to treat Pemphigus Vulgaris. I started at 40mg. I’ve been down to 1mg for a month now. My PV symptoms are almost gone, thanks to 3 rounds of Rituximab since December 2016. I know the prednisone helped save me, but am now experiencing the malaise and awful joint pain in my neck, shoulders, and hips.
I knew joint pain was a possible withdrawal symptom, but it’s been pretty bad and not getting any better. Reading this gives me hope to just be patient. I will talk to doc when I see him Monday, but it sounds like I just need to push through. I don’t want to increase prednisone. Thanks everyone for sharing your stories.
I was also on Prednisone for 1.5 years for autoimmune hepatitis. I started the Prednisone weaning process in March of 2017 and my last dose was 7/3/2017. Prior to my weaning of the drug I had read that some people just decided to stay on it because the withdrawal symptoms were so bad but I was determined to get off of it.
During the weaning I went through the same things as you with the joint pain and malaise plus I had nausea too! During that time I was trying to do yoga twice a week plus walking every day and I’ll have to tell you it wasn’t easy. Between the joint pain, malaise and just feeling horrible, I was ready to give up!
And don’t get me started about all the naps I took as I always felt so tired each day. That was the worst! At one point I even had to quit doing yoga for a couple of months because my joints hurt so bad and I was just exhausted. So during that time I completely understood why people would give up and just stay on the drug.
In the end, when you’re finally off of it, you’ll look back and be glad that you stayed the course. So be patient and hang in there as your Prednisone journey is almost over. And whenever you’re having a bad day just remember this: you’re one of the fortunate ones because the Prednisone worked for you and you’re able to get off of it which doesn’t always happen to everyone. Take care! :)
Thanks for the response. I spoke to my pharmacist today and told him I had finished. He was so happy for me and said, “don’t ever take it again.”
Hi Rachel. Your story is mine. Autoimmune hepatitis was my diagnosis in July 2016. After almost two years finally off prednisone in March 2018. Horrible withdrawals. Fatigue and joint and muscle pain mostly. Just curious how long it took for you to feel like a human being again and if you were put on any other medication. Thank you for your story. It helped because I am determined to stay off. ?
My son has been on prednisone for 14 months, for an autoimmune disease, starting with 20 mg then tapering to 10 then to 5 since Sept. He has not taken it for 1 week now, and has had nausea, vomiting, and weakness.
His Dr. said it could take up to 1 year for his body to be free of the drug. Although prednisone did help in his recovery, we were told that long term use is not good and long term effects could be possible. I just want him to feel better soon, this has been a long hard journey for all of us.
Yes, I am back on prednisone for my serious asthma issues during this mold season here in San Antonio Tx. Been taking prednisone off and on for 15 years. I have gained 35 lbs but now I am in my 2nd year allergy shots, I noticed I didn’t need the prednisone until this winter.
I am not a fan at all of taking steroids, but like everyone else says, there is not anything else. Having issues to breathe is serious. Everyone hang in there, I joined weight watchers and I think it is more the meetings that helped me emotionally when I started to lose some of the weight.
Right now I am gaining the weight, as I am taking 20 mlgs to 5 mlgs and I am in my 3 week. I am also taking vitamins D3 bc it has been so cloudy here in San Antonio this winter. I do feel the D3 working. From experience I will taper down slowly.
I am drinking more water and I keep telling myself if I did it before loosing weight, I can do it again… as far as the body aches when you taper down, I just lay down a lot, but it last a day or two. I do keep track of my steps when I am feeling better and my goal is to slowly increase my daily steps. Baby steps makes me feel I have control again. Good luck everyone.
There are natural ways of treating asthma. Garlic is huge! Also, Turmeric has helped several friends who struggle with severe asthma. I’ve been in prednisone for the past 5 months for abdominal pain from an allergic reaction I had to a stent. Side effects from the prednisone are worse than the slight relief I got. Rash has been awful!
I was on prednisone for 1.5 years due to autoimmune hepatitis. I gained a lot of weight and like you I went on weight watchers which had always worked for me in this past. After six months of not being able to keep the weight off or lose any, I did some research and read that a lot of prednisone users had success with the Atkins diet.
So I gave it a try and was able to keep weight off and lose it too! In fact I was able to lose 15 pounds during my time on prednisone. I also made it a point everyday to take calcium supplements and walk as that will help keep your bones strong.
Prednisone is a double edged sword but without it a lot of us wouldn’t be here today. Rest when you need to and take care of yourself. Hang in there and stay positive! You got this!
I hope this is helpful for those withdrawing from 4mg-6 day Medrol taper pack for a severe allergic reaction. I was prescribed Hydroxyzine 25 mg every 8 hours as needed for itching. It works much better than Benadryl. It helped me so much to relax and sleep. Apparently it is also prescribed for anxiety. Wishing you smooth restoration to health and balance!
Hi… I was diagnosed with PMR in March 2017 and given 20 mg prednisone. I’m down to 5 mg. It’s been a nightmare! Starting to feel achy but determined to keep reducing. I have been getting rashes, sweating, hair loss, and itching!! Anyone else experiencing any of this? Is it part of withdrawal?
Donna, I have been on Prednisone for a year and a half for PMR, I have finally made it down to 3mgs. I have had sweating and achy as well, but I have noticed my moods have been awful. Are you having problems with mood swings?
I was put on prednisone for temporal arteritis, 60 mg a year ago last March. I came down gradually off of that. had another biopsy on my other temple and put back on another 60 mg of prednisone. Come to find out I have a type of Hodgkins lymphoma called Waldenstroms.
I have had 4 infusions and the Waldenstroms is better, but am having terrible aches and pains in my arms and legs. I am down to 2 and a half mg of prednisone. I know I have to wait for my adrenal glands to wake up but very frustrating. Anyone have any ideas how to help the pain? I have tried Tylenol and Ibuprofen together – doesn’t seem to help. Thanks.
I was on 120mg of prednisone for 30 days before surgery, I have Crohn’s. The taper was done in a week have decreasing half everyday for 7days. By the time I left the hospital I had really bad edema, headaches, blurry vision… many of these symptoms I had throughout the entire month. I thought the weaning was a bit fast considering.
I was on 40mg the taper was 10 days or more. My two week check up after surgery I started having joint pain. I attributed it to the steroid so I told me GI doc. They decreased my humira back to weekly and mentioned that it could be an effect of the steroids. They also advised me to go to my PCP just to make sure I don’t have RA or something of the sort.
I’m not two month post op and I still have significant joint pain. I haven’t gotten check for RA cause I know it’s just gonna be a bunch of test I can’t afford T this moment with all the bills coming in from the surgery. So, I’m curious to know what you think?
Do you think it’s possible for my joint pain to be caused by the long term high dose steroid and the fast wean? If so, how long do you think it may last? Come to think of it I do still have night sweats which is something I only ever had while on steroids, low or high dose. Thanks for your input!
I was given 60mg of Prednisone a day for 15 days and then 12mg a day of Dexamethasone for 7 days for a back injury. The doctor stopped me abruptly which I didn’t realize was a problem. 24 hours later I started developing sores/boils/rash/hives on my face and chest.
They tried to say I had Folliculitis and after 16 days of 2 doses of antibiotics with little to no help and 2 negative lab cultures of my skin for infection, I’m not sure what to do. Anyone have a suggestion? Thank you.
I’ve been on a tapering dose. Started out at 15 mg, down to 7mg now. Been on it since August. I’ve had unusual angry outbursts that I could not control. Got oral thrush…very painful, swollen legs, weight gain even though I had NO APPETITE WHATSOEVER, elevated blood sugar, and grew facial hair. Can’t wait to get off this crap. Sometimes the cure is worse than the disease itself.
I was on 10mg of prednisone daily for about 8 weeks for Ankolysing Spondylitis. My Dr. tapered me off correctly but ever since I stopped them last week I can barely function. I have been extremely fatigued, joint pain, cold sweats and feel like I have the flu but no fever. Does anyone know if this is normal?
It’s crazy reading all these comments of what it’s done to people. It’s really got me wondering now. I’ve been on Prednisone off and on for as long as I can remember for mostly poison ivy, and the occasional pneumonia. I already have lots of medical problems that contain a lot of the symptoms most of you are saying, so I would have never even thought or known it could be coming from the steroids.
I would have just automatically thought they were just regular symptoms from my other problems, but now I wonder if I got these other problems from the steroids… not sure if there’s even a way to find out. Unfortunately I’m highly allergic to poison ivy. I can literally get it just from it blowing in the air, and if I don’t take care of it right away, I will look like I have third degree burns all over me – yes it’s that bad…
And it loves to get on and in my mouth first, causing breathing problems and such. Sadly Prednisone has been the only thing that has helped with it… and I have tried basically everything! And it has been the only thing that opens up my lungs when they close up… so in my case I guess it’s worth it.
I, too, am crazy allergic to poison ivy. I developed what looked like 3rd degree burns on my arms from my latest didn’t-wash-fast-enough exposure and I had a steroid shot first and then started prednisone oral 4 days later plus betamethasone (steroid) cream. 30 mg of the oral daily taken all at once, tapered down over 10 days.
Poison ivy resurfaced on my torso and legs almost immediately after finishing the first course of drugs. Was put on 60mg daily taken at the same time, tapered down over 10 days plus more of the steroid creme. Today was my last dose.
I’m having the worst joint pain now in my foot/ankle and knee, in addition to having major heartburn/acid reflux, sleeplessness, fatigue and skin sensitivity/achiness over the last week. I would never have connected all these symptoms! Hoping this clears up soon.
I have been taking prednisone for years now and I hate that I have to continue to take it I’ve experienced the weight gain, depression, etc. and is frustrating. I went through withdrawal symptoms yesterday which were severe migraine, weakness, and sweating. My body is now dependent on this medication and I hope one day I can wean off properly.
I was put on prednisone for 14 days for sinus infection. I’ve been having severe dizziness and headaches. I called the pharmacist and he said it was ok to just stop taking it. I cant get in touch with my doctor until Monday. Yesterday was suppose to start the half pills to taper off I suppose. I didn’t take it yesterday nor this morning and now I can hardly stand up.
My vision is so blurry that I’m almost blind and I have an extreme headache. I’m so pissed off with these doctors who prescribe this stuff. All this for a sinus infection? I can’t afford to be bedridden like this. I have to much to take care of. Is it possible to take something for my headaches while on this? I just took a half pill to at least get it back into my system since apparently it shuts your adrenals off. What a nightmare.
My husband suffered from sinus issues. He had three sinus surgeries in a year and was on prednisone for almost two years after the surgeries. He tapered off the prednisone bc he had no choice and started taking this supplement I found on Amazon. LES Labs Sinus & Seasonal natural supplements.
He takes two a day (morning & night)and hasn’t had any issues so far. Please research thus and read the reviews. I spent hours researching different things to try & help him and found this.
It’s only been a month but he feels better than he’s felt with any of the medication and surgeries. He hasn’t blown any green out of his nose since he started taking it and said he can finally breathe again. I hope this helps you and you are able to find relief.
I was put on prednisone for shortness of breath related to asthma (the doctor said)… 4 weeks later in ER and was diagnosed with a lung mass the size of a cantaloupe. Had surgery and slowly started tapering off of 20.
At 4 mg I became chair ridden. Weak, dizzy, brain fog, and shortness of breath again! It’s been hell!!! I didn’t need the drug to begin with and I fear I will never be the same energetic person I once was.
I’m now on 1 mg and refuse to go back up but I feel decent for about 4 hours in the AM then crash. I can’t sleep because I can’t breathe. I feel like my whole body is inflamed.
I’m so sorry that you are having the experience that you are having with this drug. Prednisone is a miracle pill for many with debilitating diseases and some can successfully take it for minor ailments that many doctors prescribe it for, but sometimes the side effects just aren’t worth the benefits.
I have been where you are and I can say to you that YOU WILL RETURN BACK TO NORMAL, it just takes a while to do so.
It can cause all the side effects that you describe and more, but the one paranoia that one often experiences makes things 100x’s worse. The drug is stored in fat cells, along with the effects that it has on your nervous system and every other darn system in your body, so it takes many quite some time to feel better.
Remind yourself of this when your limbs go numb and you feel like you are truly dying…it is temporary. I was given it for fluid on my lungs do to mild smoke inhalation. I am hyper sensitive to most drugs and can usually only tolerate a Z pack for an antibiotic. They placed me on a step down, starting out with 60mg.
At first I wouldn’t take it out of fear, but because I couldn’t breathe decided to try it. On day one I felt that AMAZING! On day two not so much and ended up in the ER with tachycardia. Day 3 back in the ER where I was convinced that I was dying with a heart rate into the 180’s, but doctors just dismissed it as anxiety.
As I was leaving the ER doctor mentioned that it could be side effects of the prednisone and to stop taking it immediately. I had been reading about not doing that due to adrenal insufficiency, but she was convinced that I hadn’t been taking it long enough to experience it. Negative!
It went downhill after that with no one making the connection until a month later; I was a mess. Eventually I was told that I would recover slowly but it would take a minimum of 6 months to come partially recover and 1 year for a full recovery.
It has been 6 months and I can say that most of the side effects are gone. I still suffer from heart palpitations from time to time and some muscle weakness, but 200% better than I was 6 months ago. Get plenty of rest and eat healthy, take walks and get plenty of vitamin D. Good luck!
I agree, this stuff stays in your system for a long time. My doctor told me no way I could feel like this for this long. Its like they don’t have a clue! I know my body and I know when something isn’t right. I hate to have to go to Dr. Google, but when you are desperate you will try anything.
And most everything I have read says it can take weeks to months to get it out of your system depending on how long you were on it. This drug horrible and I will never ever take it again.
I have been off it 15 days now and about the time I think Im getting better, it comes right back and kicks my ass. So aggravating. I use to wake up in the morning and lay there and plan my day, now I lay there wondering if this day will be a sick day or not.
Had an ER nurse tell me to take Benadryl every 4 to 6 hours with Pepcid AC. I trust her more then my Doctor at this point. I tried it and it does help with the horrible side effects. Pepcid has a steroid in it, I didn’t know that, and also helps with the symptoms.
At this point, taking that combination together, is the only thing I have found that offers relief from this horrible drug. I hope you get better soon, I really do. Just know that you are not alone.
I have had both sides of steroids now. The bad doctors that over prescribe them causing me to having Cushing’s. After winning that battle which took me somewhere between 1 & 1/2 – 2 yrs after finally figuring out what had been done, I felt great I was closing in on feeling like 80 to 90% back to normal. Then I go in for a normal ENT surgery, which I’ve had like 6 in the last 10 yrs so nothing big here.
Well my ENT knew my Endo info and still gave me a large amount of steroids during the surgery which caused my Addison’s-like condition. I’ve been told I’m lucky to be alive. I should have been dead since this dropped my levels of cortisol to a 0.3 from my 10.0 pre-surgery. If I hadn’t been moved up on the calendar I should be dead. With secondary there seem to be no signs that you’re crashing. I stopped my steroids about 30 hrs ago.
I wear the bracelet and carry my emergency meds that you’re only given about 10 mins to inject (my understanding). Well anyway, I’m running late to another doctor’s appointment for allergy shots. I hope someone found my info helpful. My suggestion is if you are like me and figure out that you are hypersensitive to steroids – make sure you list it as a allergy on your medical records.
If my body heals from this, I will be certain to list “NO ROIDS” on my medical documents. It’s amazing how it took someone a few seconds to nearly end my life and certainly cost me years of health I will never get back.
My daughter was prescribed 10 mg prednisone. She was to take 6 pills the first day, tapering down to one each day. She was prescribed this for a bad cold with some chest congestion. She was a full-time student and worked a part time job. By mid week of her prescription she started experiencing lots of energy and lack of sleep.
As the days went on she was experiencing severe mood swings and sleepless nights which led to anxiety and a visit to the ER. At the ER I explained that she was prescribed prednisone and was experiencing some bad side effects and insomnia. They checked her labs, vital signs, etc, told us she was fine and dismissed us.
After that she stayed awake for 3 nights in a row and on the last day was in complete paranoia, she was unaware of what was going on! When we got to her the paramedics had her. Again she was taken to the ER and was admitted and stayed in the hospital for an extreme intolerance to prednisone. It has been over 3 weeks since she took the last of the prednisone and she is still not back to herself.
They have her on some antipsychotic medications which too have side effects that are scary. She has never had any mental health issues and was living a very productive life as a college student. It’s looking like she will now have to withdraw from school and quit her job. This has been devastating to her and our family. Has anyone ever heard of such a reaction to prednisone? I’m so concerned about her future. This has completely turned her world upside down!
What an excellent article! I am trying to get off prednisone after seven years treatment for autoimmune disease. I knew many of the physiological side effects, but did not realize that depression could be a steroid withdrawal side effect. Your article has helped me greatly to understand and thus to be able to cope with the mental health aspect of what I am going through.
I rarely experience depression since I have been born again so it was very troubling to suddenly be sad and hopeless. To test the theory, I took a dose of fast acting hydrocortisone and the depression disappeared rapidly. But I would rather have temporary depression (and other side effects) than to stay on prednisone.
So now it is back to the tapering and back to the depression, but this time I am armed with truth. I shall consider myself in a chrysalis for a short time and fully expect to emerge as a butterfly when I have fully completed the withdrawal.
Hi guys. I too have been suffering from steroid withdrawal. I was on steroid suppositories for 5 years for ulcerative proctitis. Although these are not as strong as oral steroids they still get into the blood stream if taken long term. I just stopped taking them as I was no longer bleeding (hallelujah!). However 2 weeks later the symptoms started – extreme fatigue, muscle and joint pain, cramps, night sweats. Couldn’t work as a result.
My doctor realized I was having withdrawal symptoms and has started me back on 15mg prednisone daily to taper by 2.5mg a week for next 4 weeks. Hopefully this will kick-start my body into working again and the slow taper will minimize withdrawal… feeling hopeful.
5+ years on 5 mg of Prednisone QD. Became aware of symptoms developing at this level. Recently started slow taper of 1 mg a day decrease per month. Will take 5 months, if all goes to plan. Already struggle with trying to tell the difference between side effect that led to taper from those as a result of the taper. They are essentially the same. After restarting a few times I cut back to 0.5 mg tapper. Hope this works. First day down is good but then next day side effects again. Cold turkey is out of the question. A test of patience.
I was prescribed prednisone three years ago for polymyalgia rheumatica. Weaned off by last summer. I didn’t have an appetite, was tired, and lost 10 pounds in 6 weeks. I was in excruciating pain again.
I thought it was a fluke. I went to the doc in August and she put me back on it WITHOUT telling me I was experiencing withdrawal. I am now weaned again and experiencing the same symptoms. I thought I was crazy, but found this website.
First, why don’t the “experts” tell you this? Second, how do you survive without it? I’m taking Curcumin and Glucosamine, Aloe Vera juice, and an anti-inflammatory mixture my Naturopath prescribed, but still suffering. Your comments help me to know that I’m not alone. Thank you.
Question for Kim with PMR. It’s been a year now. How are you doing? I had PMR and am weaning off Prednisone. I’m down to 3 to 4 mg a day and getting joint pain. It’s not terrible. Just annoying. I’m dropping a 1/2 mg every 2 weeks.
My Rheumatologist recommends taking it slow. The PMR was awful and Prednisone was a miracle drug. But now I want to be off it ASAP. I hope you’re all done with your withdrawals. John
Hello John, 3 & 1/2 years now on pred for PMR. I have finally got down to 1 mg a day. At 4th attempt getting down to 3 but having to go back up to 7mg on four occasions. Reducing by 1/2 mg per 2 weeks at the moment, so 1 week into 1mg and a week to go till 0.5 mg.
Yesterday and for 3 days was able to sleep clothesless. Today however have aching legs, arms and need to wear clothes in bed. I am now up again and struggling at 3 AM. This has been a recurring theme as I have weaned off. It has been debilitating, depressing and at 63, there’s a fear that I will never be free of it.
There have been good days recently which have enthused me, so fingers crossed. Even on a really low dose you will still suffer, but push through – this is what I am doing with the end in sight. Good luck to you!
I, too, am weaning off Prednisone after three years of being on it for PMR. My rheumatologist is adamant I get off this medication but did not give me guidelines. I was down to 5 mg, barely holding per pain. In one week I dropped 1 mg each two days and now am off it.
BUT…like others, I am experiencing side effects such as sleeplessness, dizziness, weakness (fell out of my car yesterday, onto my knees, when I stepped out of the car), and pain in places I forgot about! BUT I am also glad to be off this nasty stuff and will persevere, using good ole aspirin or, even better, Excedrin for Migraines.
I don’t tolerate any other meds for arthritis/PMR and cannot take big doses of ibuprofen or related NSAIDs. So, I totally agree with “Steve” about pushing through! I will conquer this! In the meanwhile, I am pleased I found this website and all of these helpful, encouraging, reinforcing comments!