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How did you cope with the side effects tapering off prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 26 4:21pm | Replies (187)Comment receiving replies
Hello @marymckeith, It sounds like you may be tapering too fast. I started at 20 mg prednisone both times when my PMR was active. The first time it took me 3 and half years to taper off. My rheumatologist told me I need to listen to my body and only taper when the pain was under control. He had me keep a daily log with my level of pain when waking up and the amount of prednisone I took for the day. You might find the information in this reference helpful if you need to discuss the tapering with your doctor.
--- GCA & PMR - Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429.
Do you keep a daily log?
Replies to "Hello @marymckeith, It sounds like you may be tapering too fast. I started at 20 mg..."
I agree... My dad's rheumatologist said we need to "listen to his body," and not what dose we wish he could be at with the prednisone. It's not worth it to speed the taper if it impacts quality of life.
He's been at 6.25 mg the last two weeks, and he doesn't have symptoms but ESR is slightly elevated. She suggested to drop down to 6 mg, but we're really reluctant because he's only just gotten over a flare. She then said she's more than okay with staying at the current dose for another 2 more weeks so we can feel more certain his pain is stable.
Also agree with @vellen and others who've mentioned walking and gentle stretching. With an inflammatory (unlike "wear and tear" or osteoarthritis), the pain usually gets worse with prolonged rest. My dad had a severe stroke, so we have to help him with his exercises, but we always have to start the day with gentle range of motion exercises and help keep him moving as is possible throughout the day, or the stiffness gets worse.
Thank you so much for alerting me that I was tapering too fast. I would so much rather not be on it but quality of life is so important.
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No but I will. Dr told me to go back up to 20 until August. I feel fine until I take the pill. When it kicks in I become profoundly weak. Could barely make it back to car after groceries. I don't think anyone believes how debilitating it is. Practically a zombie. Thanks for answering and I will try to go on the best that I can. Can't understand why 20 isn't working as before. Had two wonderful months.