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How does your pain come back when decreasing dosage?

Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (57)
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@susanalka

"Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and asking how I’m doing."
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Some people interpret this to mean that their doctor would like for them to taper off Prednisone faster. My rheumatologist "encouraged" me and offered "suggestions" that might help me get off Prednisone sooner. I interpreted the encouragement and the suggestions were because of her concern for my overall health and well being.

You are doing great to have tapered down from 20 mg to be at 2.5 mg in less than a year. I hope you don't have a relapse. I think most rheumatologists will only consider a biologic after you experience a relapse. Biologics like Actemra are currently being used for "relapsing PMR" or "refractory PMR."

There are several biologics available now but more options might be available in the future.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr.

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Replies to "@susanalka "Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and..."
susanalka | @susanalka | Nov 13 8:09am

@dadcue thanks so much Mike, info greatly appreciated

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cyndiefromnc | @cyndiefromnc | Nov 14 5:25am

@dadcue Mike, what is considered a relapse? When I had my first flareup, I could barely walk. This came on fast but was fleeting. The prednisne helped within 24 hours, I was our running and lifting again. I've run, walked and lifted through my entire taper. The pain began returning when I went under 10mg. I can stand a little pain. I can't stand the mood swings, loss of hair, etc of prednisone, so I kept tapering and am down to 4.5mg in 8 months so not fast but not slow .
Now I hurt my back, no doubt lifting my granddaughter, as I babysit her. I honestly don't know what to do now. I've always had trouble with my back and have had to go on muscle relaxers and ibuprofin for a few days to kick it out. Of course now I can't take the ibuprophin. The pain is lingering and I'm wondering if it is my usual back problem, something worse, or a flareup.
This disease is so frustrating.
And of course the wait to get into doctor is maddening.

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