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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Hello Cynthia! I'm sorry to read that your pain keeps coming back. I only recently was diagnosed with PMR about a month ago. Doctor started me on 20 mg/day for 1 week, then lowered to 15 mg/day for the next week. Pain came back even before I lowered to 15 mg, but I proceeded anyway, only to have the pain worsen to its highest levels (needed help out of bed). Doctor increased me to 20 mg in morning, 10 mg at night about 2 weeks ago, and I've felt almost 100% since then, although the prednisone does seem to wear me out a little. So from my very limited experience, my guess is that maybe your doctor tapered you too soon and/or started you with too low of a dosage. I'd advise your doctor of any flare-ups, so that he/she could determine if you should be restarted at a higher dosage.
Replies to "Hello Cynthia! I'm sorry to read that your pain keeps coming back. I only recently was..."
Hi Cynthia, I too am newly diagnosed (May 8). Rheumatologist started me on 20 mg of prednisone which, after a few days, I reported that it wasn’t really a game change (some relief but not complete). She upped dosage to 30mg for a week then tapered to 25 for 5 days and now I am on 20mg. I have not experienced any joint pain during this time. However, I have an Dr. appointment next week and I think Dr. will want to continue the taper. Needless to say I am nervous about this but understand the need to reduce/get off of prednisone with minimum issues. I will report back my continuing saga. FYI, so far no side effects on prednisone but I have been on a pretty strict Mediterranean diet with no salt or sugar. I do have a dexa scan next week as well. I am hoping my bone density is not in the osteoporosis range. Good luck and keep communicating with your Dr. Liz Ward
Interesting to read this. I’ve been started on 15 mg a bit over two weeks ago. The first week the pain was gone, I’m finding now that I’ve got a lot of pain breaking through again. It’s very discouraging, however I read through these posts and realize I’m not alone nor am I as some others and for that am grateful. I touch base with my specialist next week, I can see an increase in prednisone coming up. I’m not wanting to increase dose as so far I don’t have any of the side effects of prednisone, except insomnia! Who wants to sleep anyway?? 🤣🤣
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I totally agree with you.
My doctor and I are scheduled for Telehealth visit tomorrow morning.
Thank you