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How to address PMR pain while decreasing prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Nov 6, 2023 | Replies (747)
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@sharync

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

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Replies to "amom7, thanks for your info as it reassures me that I do have this weird condition,..."
amom7 | @amom7 | Jul 12, 2019

My understanding is that prednisone only deals with the inflammation and the pmr goes away when it’s ready. My rheumatologist said I may be on pred for the rest of my life, but I am 80 yrs old. 😀

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John, Volunteer Mentor | @johnbishop | Jul 12, 2019

@sharync, I think it has to do with controlling the inflammation and each of us are different in how long it takes and the dosage needed to reduce or eliminate the symptoms. I have had two occurrences of PMR and the first time it took 3+ years to taper off of prednisone. The PMR went into remission for 6 years and then came back. The second time it took me 1-1/2 years to taper off of prednisone. I think diet and exercise can help control the symptoms and keep the PMR in remission but then that's just my non medical opinion. Here's some information that may give you some insight on how the drug works.

Polymyalgia Rheumatica: A Severe, Self-Limiting Disease
-- https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

The correct prednisone starting dose in polymyalgia rheumatica is related to body weight but not to disease severity
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114801/

I'm not sure I would be frightened to start tapering off of prednisone but I would have a discussion with my rheumatologist for any concerns I had on a tapering or weaning off schedule. I think most members will tell you that you have to listen to your body. It will tell you if you are tapering off too fast....the pain level starts getting worse. I would suggest that you keep a log of the dosage and a pain scale for how you feel each day. This will give you something to share with your rheumatologist and they may be able to share some suggestions.

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Pauletta | @rachelp | Jul 22, 2019

I was told at the Mayo Clinic in Jacksonville, FL, that about 40% of PMR patients never go into remission. Unfortunately, at present I am one of them. Further, I learned that about 10% of PMR patients will not have elevated lab results for inflammation. Unfortunately, I am in that category as well. Currently, I am on 12 mg of prednisone. The pain came back (difficulty in standing especially) when the dosage was dropped to 11 mg. I went back to the 12 mg, and I will next try dropping to 11.5 mg for a month and see if I can then drop to 11 mg. At this point, a dosage of 5 mg is looking good! Hope springs eternal . . .

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