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Does anyone else feel isolated and misunderstood?
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (49)Comment receiving replies
@kathleenclaire
I resisted taking Kevzara until I finally learned from my Dr that “it would help me get off prednisone “
(A major point that was never explained)
AND IT DID.
Look into it
Replies to "@kathleenclaire I resisted taking Kevzara until I finally learned from my Dr that “it would help..."
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@tweetypie13
My rheumatologist described Actemra in the same way. No guarantee was ever made but it was said that Actemra represented my "best chance" of ever getting off prednisone. That comment was made when I fully expected to need prednisone for the rest of my life.
When someone strongly discouraged me from trying Actemra, I almost refused. My rheumatologist noticed my reluctance. His response was that I wouldn't know whether Actemra would work unless I tried it to see.
I was still a skeptic and fully expected that I would fail once again to taper off prednisone. I purposely tapered from 7 mg to 3 mg at a rate of 1 mg per week. I wanted to get "inevitable flare" over with
I had some issues when I reached 3 mg but my issues were mostly from a low cortisol level and not a PMR flare. Now I have been prednisone free for more than 5 years.
I'm still doing a monthly infusion of Actemra. If I need Actemra for the rest of my life my rheumatologist thinks that Actemra has fewer side effects than Prednisone.