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← Return to Reducing Pednisone
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I started Actemra 6 mos after diagnosis and had been on as much as 40-60 mg Pred since my symptoms & diagnosis. I’m tapered off Pred now but remain on Actemra after 1.5 years. I don’t see how it’s helping my discomfort much, but my lab numbers are good now. Rheumy wants me on it longer , but no Pred !
Replies to "I started Actemra 6 mos after diagnosis and had been on as much as 40-60 mg..."
"I don’t see how it’s helping my discomfort much, but my lab numbers are good now. Rheumy wants me on it longer , but no Pred!"
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@aflik
I still have "some discomfort." I was on higher doses of prednisone too. I spent a long time in the 40-60 mg range, Then I spent an even longer time in the 20-40 mg range. I finally got stuck on 10 mg when Actemra was started. When you consider all the flares I had tapering off prednisone --- Actemra works so much better for me.
Considering I was on Prednisone for PMR for more than 12 years, I am very happy to accept "some discomfort" in exchange for being off prednisone. More importantly, I haven't had any flares in almost 5 years since being treated with Actemra alone.
My medical records list "long term Prednisone use" as a problem. In parenthesis, long term is clarified and it says "decades." I look at it this way --- Actemra must be doing something because otherwise I would not be off prednisone.
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@aflik
Actemra blocks one source of inflammation, IL-6. You must have additional kinds of inflammation that are active. I started Actemra about 6 weeks after diagnosis, and I've been taking it for 14 months. I've been off of prednisone for about 6 weeks. I haven't had any symptoms of PMR or GCA since I started treatment 15 months ago.
You could try Rinvoq. It works differently than Actemra, and is approved to treat GCA.