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New PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: 32 minutes ago | Replies (120)Comment receiving replies
"I read the other day that someone received Actemra for PMR. According to our rheumatologist, it's safer, less side-effects and can be quickly stopped unlike prednisone."
My first dose of Actemra was January 1st, 2019 and it was used for "refractory PMR." I haven't ever been diagnosed with GCA but I was diagnosed with PMR in 2007. I had 12 years of PMR before Actemra was tried. Actemra is not FDA approved for PMR but my rheumatologist sought a waiver to get it approved for me. I wish a waiver was sought much sooner because I was able to taper off prednisone in 1 year after Actemra was started. My prednisone doses for refractory PMR averaged approximately 25 mg for 12 years.
I have been on Actemra ever since except for a couple of "interuptions." One interruption was because of a suppy chain problem during Covid. Whenever Actemra is stopped my symptoms have returned. I now do monthly infusions but I have gone 5 weeks between infusions. I'm currently going for 6 weeks between infusions because of a tranAtlantic cruise with some time spent in Europe before returning to the States. I wouldn't have dreamed of doing this trip before Actemra was tried.
All my mornings are without pain as long as I am on Actemra. I did go through a stage where I lost all hope of ever getting off prednisone. That was worst I ever felt during the whole ordeal so never, ever lose hope!
I haven't had any serious side effects from Actemra. Besides being off Prednisone, I'm also off many of the medications I was on that were primarily used to treat prednisone side effects.
Kevzara is a similar medication that is now FDA approved for PMR. Kevzara and Actemra are both IL-6 receptor blockers.
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@dadcue
I'm not sure if I've responded to this before but in case I haven't. Thank you for sharing. I can't believe how long you've had this and been on Prednisone. And so glad they put you on Actemra for PMR. I think anyone who has PMR for a long time who can't get off Prednisone should be given a chance with Actemra. Maybe the Kevzara will work great for people with PMR. I sure hope so. We are definitely noticing improvements since he's been on Actemra. He's able to taper (down from 80 mg to 50 mg now - his doctor checks his levels every two weeks and since they've been great, she reduces him another 10.) It's slow going, and at some point she will start reducing 5 mg instead of 10. We'll get there. One good thing is he has no pain. He's jittery and can't sleep more than 4-5 hours a night but we think that's the prednisone. Fingers crossed that as he tapers the jitteriness and lack of sleep will improve.
When are you going on the cruise? Can they give you the Actemra injection that you can give yourself if needed? My husband is on weekly shots that I give him. Just a thought.