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DiscussionBetter to be in some pain or better to up the dose of prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 21, 2025 | Replies (80)Comment receiving replies
Replies to "By radical new approach do you mena the Actemra? I know nothing about. I was offered..."
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Yes it was Actemra (tocilizumab). It isn't so new anymore and many people are on Actemra for mostly GCA.
When I started Actemra more than 6 years ago it had been recently FDA approved for GCA. I wasn't diagnosed with GCA ... only PMR among other things. My problem was that it was "impossible" for me to taper off prednisone without having a major problem. When my rheumatologist wanted me to try Actemra, it was called my "best chance" of ever getting off prednisone.
I was under the impression that Prednisone was the "only option" for PMR. Also I was being told that Prednisone for the rest of my life was an acceptable outcome. My rheumatologist disagreed with whoever was telling me those things. He said it wouldn't be easy to get Actemra approved for me. However, if I was willing to try Actemra, he would do everything he could.
Actemra was approved and it worked brilliantly for me. I was able to taper off Prednisone for the first time in 12 years. I haven't needed any Prednisone in more than 4 years. I have no side effects from Actemra.
Not only was I able to taper off Prednisone ... 5 other medications that were treating Prednisone side effects have also been discontinued. Almost all of the other medications I was taking while on Prednisone have been discontinued.