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New PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: 6 days ago | Replies (120)Comment receiving replies
@tedmbrady
My husband developed PMR 5/2023 and then GCA (giant cell arteritis) in 2/2024. It's been a ride. He began on 30 mg prednisone for his PMR and tapered down to 12.5 mg before developing GCA. His was a bad case that needed 1200 mg infusions of steroids for three days followed by 80 mg prednisone. They have been tapering him and he's now at 50 mg. He's also getting Actemra injections weekly that should help taper and possibly eliminate prednisone.
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. She said he could be on it for 2-3 years or for life, she's not sure, but he had a really bad treatment-resistant case.
One thing that worked for him as far as having pain when he woke up was splitting the dose. Something you could discuss with your doc. For instance, now that he's on 50 mg she's having him take 30 in the am with breakfast and 20 in the pm with dinner. When he was on 80, he took 50/30, when he was on 70 he took 40/30. When he was on lower doses, like the 12.5, he would take 7.5 in the morning and 5 at night. That is the only way for him to be pain free. Totally pain free. But, if he takes it once a day, he has pain for hours after waking up.
I hope this helps.
Replies to "@tedmbrady My husband developed PMR 5/2023 and then GCA (giant cell arteritis) in 2/2024. It's been..."
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"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.