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When is it time to discontinue prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (12)Comment receiving replies
@rnm. It appears that you may be one of the lucky ones that finishes with prednisone earlier than most on this forum. I have friends that have taken 3 months to get over PMR. Some have taken 6 months, others nine I think I may be one of the lucky ones too. I started my PMR journey in March of 2025 and am down to 3 mg. I am hoping to be done sometime this winter (January?). I am 63 years old. You must remember that folks on this PMR forum are helpful, but a biased sample of PMR patients. Many who have PMR do not have a long term case and are not searching for answers/help on this forum. We never hear from them. That said.....every case is different and there is some great info on this forum that can help ALL PMR patients. I do like @noti's idea of alternating days on the last .5 mg. Whatever you can do in terms of dosage to lessen the complete drop off. For example, I have gone to 1/2 mg drops these last few dosages because when you drop, each drop of 1 mg is a greater percentage dose reduction as you reduce. But I think that for me not having PMR pain right now while on 3 mg means that my issues are mostly (?) the adrenal gland getting started again. Some weird feelings with that. I may be more frightened now of the adrenal functioning than I am of PMR. Good luck.
Replies to "@rnm. It appears that you may be one of the lucky ones that finishes with prednisone..."
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@petermccarville
"Many who have PMR do not have a long term case and are not searching for answers/help on this forum. We never hear from them."
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This is a pity because I want to know why some people get over PMR so soon and others don't. Maybe I could learn something from them.
The only thing I have learned from 12 years of PMR was what Prednisone did to me for 12 years. PMR didn't seem to do any lasting harm. I distinctly remember telling a physical therapist, "Nothing could hurt that much without causing some damage." Now I know that PMR can be chronic but it didn't do any damage to my shoulders and upper body where PMR hurt the most. My lower body is a disaster zone but other things besides PMR can explain that damage.
What I have learned is that the primary treatment of PMR are corticosteroids (like prednisone) and the treatment can have significant side effects and long-term health implications. I'm so grateful that Actemra allowed me to taper off Prednisone after 12 years and things are getting better for me. Don't believe anyone that says Prednisone side effects are "easy to manage" and the "only option" for PMR.
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Have you seen the recent videos that Dr Megan the prednisone pharmacist has made about flares vs. withdrawal vs. adrenal insufficiency?