Connect
← Return to Just starting prednisone for recent PMR dx. Terrified of side effects
Discussion
Just starting prednisone for recent PMR dx. Terrified of side effects
Polymyalgia Rheumatica (PMR) | Last Active: Dec 22, 2025 | Replies (27)Comment receiving replies
@nm11643 I have actually been pain free and off of HCL for two years now. Rheumatologist actually announced that I am in remission. (Hopefully to never experience PMR again). It took two and a half years.
I have been a member of HealthUnlocked (England and Italy) since 12/2020 which is the equivalent of this Mayo Clinic blog. Over that time span, I was the ONLY person who managed to actually recover from PMR completely. Sadly, it has been totally impossible to convince anyone on that site that PMR can be treated with HCL instead of Prednisone. They just laughed at me when I announced I had to make that change due to the AMD. But one other factor is probably a reason none of the thousands on that site are getting past the 7.5mg prednisone threshold is because they have all been coerced by their health system that, and I quote: “Everyone over the age of 50 should be taking STATINS”.
Replies to "@nm11643 I have actually been pain free and off of HCL for two years now. Rheumatologist..."
Connect
"I have been a member of HealthUnlocked (England and Italy) since 12/2020 which is the equivalent of this Mayo Clinic blog. Over that time span, I was the ONLY person who managed to actually recover from PMR completely. Sadly, it has been totally impossible to convince anyone on that site that PMR can be treated with HCL instead of Prednisone."
-----------------------
@hosers2
I'm happy hydroxychloroquine worked for you. Maybe you should just stick with MayoConnect. It is more geared to how USA patients are treated for PMR/GCA but anyone from anywhere is welcome to share their personal experiences.
The "experts" on the HealthUnlocked PMR forum aren't very open-minded. I started Actemra to treat PMR about seven years ago. I was on Prednisone for 12 years so I wanted an alternative to Prednisone. I was willing to try Actemra but I didn't know anything about Actemra. I just wanted some information but I was told that Prednisone was the "only option" for PMR. I was discouraged from even trying Actemra because of all the potentially "serious" side effects relative to the "manageable" prednisone side effects. Very few people had any personal experience with Actemra to treat PMR which were the people I wanted to hear from instead of the "experts."
I went ahead and tried Actemra. Within a year I was off Prednisone. I was excited to share my personal experience. The "experts" on the Healthlocked PMR forum said my experience with Actemra wasn't pertinent information to people in the UK. Eventually I was banned from the forum for not disclosing I was from the USA. My being from the USA was obvious to everyone on the forum.
I liked the HealthUnlocked PMR forum in general ... it was just the self proclaimed PMR experts that weren't open-minded. I think the experts had good intentions. They certainly advised people to take more prednisone when they thought someone needed it. Twelve years of prednisone was enough for me.