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What is the goal when tapering?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 25 4:32pm | Replies (23)Comment receiving replies
I saw the rheumatologist's PA today, and I asked her how long people with GCA usually take Actemra. She was definitely not encouraging about getting off of it. She said GCA isn't like PMR where the PMR burns itself out. She said the likelihood and risk of relapse on GCA is high enough that people have to keep taking Actemra long term. I just googled that question, and it says the typical duration of Actemra is one year. So I'm not sure which answer to believe.
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The National Health Service in England restricts the use of Actemra to treat GCA to one year. Based on a survey, maybe people with GCA in England would like that to change that restriction.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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Google doesn't even list the duration of Actemra to treat PMR because it isn't FDA approved for PMR. Google just says the duration is variable depending on the conditions being treated.
I don't know where that leaves me because I'm into my 7th year of Actemra for PMR. There were a couple of interruptions of my treatment with Actemra that weren't good. I think my rheumatologist is only considering how well I tolerate Actemra along with how effective it is for me. Compared with my 12 years on prednisone, my Actemra years have been very smooth sailing.
I have a colonoscopy scheduled in August. I'm worried they might find diverticulitis which could mean I would have to stop Actemra. I didn't have diverticulitis 10 years ago when my last colonoscopy was done. I think I might cancel the colonoscopy.