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billc1965 avatar

Diagnosed with PMR 16 days ago.

Polymyalgia Rheumatica (PMR) | Last Active: Jul 27, 2025 | Replies (56)

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Have you stopped Actemra and been able to stay off prednisone? I have been on Actemra for more than 6 years with virtually no side effects. Whenever my Actemra infusions have been held for more than 6 weeks, my symptoms return along with increased inflammation markers. My rheumatologist sees no need and has no plan to discontinue Actemra.

Maybe I need to try again to see if Actemra can be stopped. My problem is that multiple different conditions could flare up again. I would have to convene a committee of multiple medical specialists to see if they could all agree with a plan to stop Actemra.

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Replies to "Have you stopped Actemra and been able to stay off prednisone? I have been on Actemra..."

My last Actemra injection was June 9, 2025 and before that I was injecting every 6-7 weeks. I don't plan to use any more. I've been off prednisone since late 2023.

I've got a stash of prednisone, plus one more shot of Actemra in the frig, in case of relapse.

So far, so good.