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Just starting prednisone for recent PMR dx. Terrified of side effects
Polymyalgia Rheumatica (PMR) | Last Active: Dec 22, 2025 | Replies (27)Comment receiving replies
@dadcue The “self proclaimed PMR experts” got me reprimanded because somehow “I was scaring them”. Those experts had PRM for years and years and, according to them, there was no other cure for PMR than Prednisone. When I suggested their pains might be from them constantly taking high doses of Atvoristatin (for high cholesterol), I was, once again, reprimanded as though I was giving out medical advice. So I “banned” myself. You can lead a dog to water, but you cannot make him drink.
Replies to "@dadcue The “self proclaimed PMR experts” got me reprimanded because somehow “I was scaring them”. Those..."
I just read something interesting from the American College of Rheumatolology (ACR) that you might like.
"In patients for whom long-term steroid use is felt to be problematic because of side effects, your rheumatologist might try other medications, including methotrexate or hydroxychloroquine."
https://rheumatology.org/patients/polymyalgia-rheumatica
I think most doctors in the UK would agree that long term steroid use is "problematic."
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My rheumatologist never tried hydroxychloroquine but other medications were tried to see if anything would help me taper off Prednisone. My rheumatologist was open-minded enough to try almost anything if I was willing. When Actemra was tried there was no guarantee it would work. I was told that I wouldn't know if it worked or not unless I tried it to see.
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I'm over it now but I still get riled up sometimes ... sorry. Your post triggered something. I am truly happy that something besides Prednisone works for you.
I haven't needed any prednisone for about 5 years. I have been on Actemra for 7 years without any serious side effects. I relapse when Actemra is stopped but my relapse was a gradual return of my symptoms combined with elevated ESR and CRP.
I loved the following survey from the UK.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/.
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I said some of the same things about Actemra years ago and I got banned. The "expert" seemed to think Prednisone for the rest of my life was a better option for me than Actemra.
The expert knew more about how to treat PMR because of the many years she has taken prednisone. When I got banned, she was being started on Actemra for PMR after she told me doctors in the USA were "breaking the rules" for treating PMR with Actemra.
Actemra isn't FDA approved for PMR but my theumatologist thought it might work for me. Now Kevzara is FDA approved for PMR but it wasn't available when I started Actemra. I went with my rheumatologist's expertise at the time. He said it was only an "educated guess" that Actemra might work for me.