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Still Struggling with that last mile on the path to 0 mg
Polymyalgia Rheumatica (PMR) | Last Active: Aug 21, 2025 | Replies (28)Comment receiving replies
The UK is a good case study for what happens when Actemra is stopped. In the UK, treatment of GCA with Actemra is limited to one year.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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I pity the patients in the UK. Generally, the belief is if Prednisone is working don't even consider Actemra. This narrative is preached no matter how long a patient stays on prednisone.
My rheumatologist believes long term Actemra is safer for me than long term Prednisone. My personal experience with long term Prednisone compared to long term Actemra leads me to believe the same... at least for now.
"... there is accumulating evidence, from TOC STOP and other observational studies from around the world [4, 6, 7] that 1 year of treatment is for a substantial proportion of patients not ‘enough to sustain remission in the longer term’ as was originally assumed."
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I agree with everything you say in your post. Since many people with PMR have to be treated for several years, it makes sense that people with GCA also need to be treated for several years, since many researchers now believe that PMR and GCA are on a spectrum of the same disease.
I just finished my first year on Actemra, and my rheumatologist told me that I'll probably be on it for several more years to protect against relapses.
I strongly prefer Actemra to prednisone due to the lack of side effects for Actemra. I felt like I had completely recovered from prednisone once I got down to 2 mg per day, because I couldn't imagine feeling better. But I stopped prednisone a week ago, and I've been very surprised that my sleep is consistently deeper and longer, plus I'm dreaming much more. So even at 1 mg per day prednisone was affecting my sleep.