How to wean off prednisone 5mg without side effects?
Hello. I’ve been multiple “bursts” of prednisone over the last year, with each time weaning off becoming more difficult. I desperately want off of this drug but this time I was out on an alternate day taper 5mg one day next day 2.5 mg for one month then 2.5 mg for one month then off. I couldn’t tolerate going down to 2.5 mg without bad withdrawal symptoms or questionable adrenal insufficiency so now I’ve been prescribed 4 mg for 1 month 3 mg for 1 month 2 mg for 1 month the 1 mg for 1 month; I start this taper tomorrow. This seems like an excessively long taper to me. Has anyone else had a difficult time tapering off of 5 mg and would you share your side effects coming off and also if you do have a successful taper where you were able to stop it completely?
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I am a big fan, personally, of long tapers and if you already had issues with the previous taper, maybe this one will help. I also use time, meaning when I reach a low dose I widen the time between doses gradually...
@windyshores , thank you for your input!
What is Prednisone treating? It can't be PMR because people with PMR take Prednisone for years. They would consider tapering by 1 mg per month a fast taper and not excessively long. I was diagnosed with PMR and didn't taper off Prednisone again for 13 years. I don't know of anyone with PMR who doesn't have difficulty tapering off Prednisone from 5 mg to zero.
I know what you mean by having done multiple "bursts" of prednisone." I did exactly that for 20 years before PMR was diagnosed. Going from 60 mg to zero in 4 weeks was never a problem. It just depends on what is being treated ... I guess.
I remember my days when I could taper off Prednisone quickly with fond memories. It makes me laugh about what people perceive about what is the "best way" to taper off Prednisone. There isn't a single best way --- there are too many variables.
It does get harder to taper off the longer you take Prednisone. Many people wind up taking 5 mg of prednisone for the rest of their lives. It just depends on the variable you are trying to overcome!
If it is adrenal insufficiency there isn't much you can do to speed up the tapering process. The adrenals won't be in a rush to produce cortisol again. However, I managed to taper off prednisone in spite of adrenal insufficiency.
I think like dadcue mentioned there can be a lot of variable. You dont mention how long you were on the steroids. That can play a key role. If you have been on them for some time it most likely is adrenal insufficiency unless you end up treating inflammation for other than PMR. I may be an unusual case but I spent about 3 months trying to diagnose the problem. I then started on steroids for the treatment of PMR. I started at 20mg for 1 week then dropped to 10mg. I spent 4 months at 10mg then dropped to 5 mg. I spent 1 week at 5mg then dropped to 2.5mg. I quit completely at 6 months. I had some pain. My days were uncomfortable going from 10 to 5. but I managed to hold on. It then took 3-4 months to feel better. Maybe mine was due to the short amount of time taking steroids. Or that I did not have any other conditions that popped up. I also willed it to happen. It has taken me 3 years to shake off the side effects of that 6 months on steroids.
I’m sorry I didn’t really explain why I’m even on prednisone. I have been given bursts for asthma flares, acute sinusitis that turned into chronic sinusitis, bronchitis, the metapneumo virus. I do not have PMR but I came here in hopes of gaining some insight to getting off this horrible drug that has turned my life upside down. This time trying to come off is causing complete cold clammy body chills, headaches, extreme dizziness, extreme fatigue, to the point where I don’t feel like I have enough energy to take the next breath, nausea and joint and muscles aches. I literally feel like I belong in the hospital. My primary care said I shouldn’t be having these symptoms. The endocrinologist who I sought out myself to try to get to the bottom of what’s happening said to take 5 mg for 7 days then 2.5 for 7 days then none for 2 days then have an AM cortisol and ACTH level drawn. She said if the levels were normal I could stay off the prednisone. They were apparently normal but there was no way I could tolerate staying off of it so that’s when she put me on the 5mg/ 2.5 mg schedule every other day. I still don’t know if what I’m experiencing is withdrawal symptoms or adrenal insufficiency. The reason I say that is because I read that you can have a normal cortisol and ACTH level but if the pituitary isn’t functioning normally you can have adrenal insufficiency. I also read the only way to accurately rule out adrenal insufficiency is by doing an ACTH challenge test. When I mentioned this to the Endo she said she didn’t think that was necessary and felt that if I had adrenal insufficiency then I would not have had a normal cortisol and ACTH level after being off of the prednisone for 2 days. At this point I don’t even know what to think. So, tomorrow I start the new tapper.
May I ask what side effects you experienced from being on/coming off the prednisone?
lots more information. Thank you. A google search on the accuracy of the ACTH test shows many patients not properly diagnosed. They might be throwing darts at your diagnosis. I would agree your symptoms seem to be related to AI. But I dont think you can rule out anything. You may have aggravated any number of inflammatory diseases.
Any suggestions on where to go from here? I can ask my Endo to do an ACTH challenge but of course that’s going to mean being off the prednisone for at least 48 hrs. I don’t know what other tests to ask for, any suggestions?
My side effects from steroid use were increased weight, raise in blood pressure, raise in my cholesterol, raise in my A1C. My cholesterol was always around 230 total. shot up to 310. My A1C was 5.6 is now 6.0. my weight went from 200 to 215. My BP was 130/70 went to 150/80. I am now taking a BP medication and cholesterol medication. Both have come back down with the medication. About half way on my weight.
I dont have a suggestion. Dadcue is much more of an autoimmune specialist. Others on here may have ideas. In my thinking, if your cortisol is fine and test was accurate then possibly the pain is due to the fact you have not resolved the source of the inflammation. Many have found multiple reasons for inflammation. I know to diagnose my PMR they had to rule out everything it wasnt. Rheumatoid arthritis, Lupus, cancer etc. I was tested for about 10 different things. I also had a PET scan for cancer. PMR could still be a possibility. Many have had normal ESR and Sed rate yet still have PMR. Your testing would be skewed since you take steroids for other reasons. Just a beginning. If your not happy with your Dr find another one.