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Still Struggling with that last mile on the path to 0 mg
Polymyalgia Rheumatica (PMR) | Last Active: Aug 21 5:29pm | Replies (28)Comment receiving replies
Hmmmm. Interesting. I asked current rheumatologist about restarting Actemra but he said he didn't want to put me on any other strong medications as long as Pred was working.
Hopefully when I see new
Doctor (hope hope) I will be able to bring this up with him.
Thanks for the question!!!
Replies to "Hmmmm. Interesting. I asked current rheumatologist about restarting Actemra but he said he didn't want to..."
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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."