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Polymyalgia Rheumatica (PMR) | Last Active: Jun 19 1:29pm | Replies (36)
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Replies to "Thank you for your post. I am soon to start on Actemra alongside Prednisolone, at least..."
I hope Actemra works for you. Being optimistic is important I think. I lost all hope that I would ever get off prednisone. I was being told prednisone was the "only option" for PMR/GCA.
I wasn't feeling optimistic at all when I tried Actemra. I reluctantly agreed to try Actemra just to get past the inevitable flare. My rheumatologist only said Actemra "might work" not that it would work. He waffled about doing an infusion or a weekly injection until he finally decided on an injection every 2 weeks to "play it safe."
What happened in the years that followed is amazing to me. There wasn't the instant relief like prednisone provided. There was just a slow but steady improvement in my overall health and well being. I was discouraged because of a couple of setbacks. At one point after getting to zero prednisone, I needed 60 mg again and Actemra was stopped while I tried a different biologic. It was because of something unrelated to PMR/GCA and it surprised everyone -- including me.
I truly don't want to give "false hope" to anyone but you do need some hope.