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Polymyalgia Rheumatica (PMR) | Last Active: Sep 11 9:33am | Replies (8)

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@tuckerp

I did not take Actemra but reading the data and Dadcue's literature, I would think stopping Actemra would be easier than those of us that were able to stop taking steroids alone. Are you still taking prednisone? If you have weaned off prednisone then stopping Actemra should depend on whether your PMR is still active. That will be a very individual occurrence. Like Dadcue your PMR may be a lifelong disease. I was fortunate. I was able to stop taking steroids in 6 months. I had two flares the first year but none in the last 3.

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Replies to "I did not take Actemra but reading the data and Dadcue's literature, I would think stopping..."

jeff97 | @jeff97 | Aug 28 7:27am

Actemra is only approved in the US for GCA, but I know people with PMR get it prescribed occasionally. Relapsing with GCA is riskier than relapsing PMR, since GCA can cause vision loss, aneurysms, aorta dissection, etc. It's difficult to know if your GCA is still active or not, but I would rather not find out by having GCA return.

Google says "Some studies show relapse rates of 40–50% within 18 months of stopping treatment" regarding GCA.

I've been taking weekly injections for a year. I'm expecting to be taking them for at least a couple more years.

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