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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)
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@skiing

I too am having struggles. I was almost an invalid by the time I was diagnosed. Started on 40 mg of prednisone. Tapered down to 8 over 5 months then a flare up at 8 always was sore from mid night to about 11:00 take my meds at 5:00 am. After the flare up I saw 2 dr who I respect and have confidence in. They suggested go back to 10 which I did, but no better lots of stiffness and pain so went to 12 and still too much soreness and pain to try to taper again as mentor John says pain level should be 1 - 2, I am at 4 - 5 now I really don’t want to go to 14 but I may have to. My dr said try taper at 1/2 mg every two weeks now. Everyone is different and we all struggle trying to get over the pmr and off prednisone. Hang in their folks know you are not alone

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Replies to "I too am having struggles. I was almost an invalid by the time I was diagnosed...."
mollytracey198 | @mollytracey198 | Dec 7, 2021

Hi, reading your post gives me deja vu. I was terrified as to what happened to the fitness guru (me) who does triatheletics for fun. After going in & out of drs & self medicating in lieu of being laid up 4 days after my tri-adventures prednisone was a food group. I knew what my CRP & Sed rates were cuz I just knew. Not so much the 1st time in 2014 but it was 245. Yes that’s right.
(In a nutshell I’m prone to mosquitoes black flies, any blood sucker out there. Here’s the scoop on that. In order for you to go into remit ion you must be symptom free for 2weeks to a month w/o tapering. Once you stabilize, slowly knock down a1/2 at a time. If not, you symptoms will bounce back at you & you start all over. My PMR attacked almost ever joint I have. It has since morphed into a neglected tropical systemic. disease. Get with the Rheumatologist and get a set plan. Prednisone is your only defense. I went into remission for 18 months but it came back wi vengeance. It’s a bitch but yoga, mindfulness, anything you can do to get out of your own head works. Good Luck

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