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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
Hi @redboat, I told my rheumatologist there is nothing like the pain of PMR. I called it my astronaut suit of pain and stiffness. And the pain was always worse in the mornings! Not even 45 minutes of stretching in bed or a long walk in the mornings helped it. It eased up a little, but it was still pretty bad in the evenings. I spent a year on the couch with the companionship of an infrared heating pad. The only treatment I got for GCA was 40 mg of prednisone, which I tapered down by 5mg every two weeks, starting in late May of 2021. I was on it about a year and a half. I gained the weight I lost back, and the shingles was a mild case. There is also a medication you can take for shingles if caught early enough. I had a CRP test every month, and only had to go back up to a previous dosage of prednisone once.
Did you talk to your doctor about your pain? Maybe your meds need tweaking. The guidance I've read is to take tylenol (not NSAIDs) for pain management.
I wish you the best and hope your symptoms ease up soon.
Replies to "Hi @redboat, I told my rheumatologist there is nothing like the pain of PMR. I called..."
I remember, when first diagnosed and not willing to take Pred., one night when the pain was so severe it felt like my entire body was on fire. That is when I gave in and started Pred. Can you imagine having this disease before Pred? I don't know how anyone could survive it. I'm not a pill-taker but this situation forced me to change my mind.
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Thanks for your kind comments and the background.
My pain, prior to getting prednisone, was 24/7 and SEVERE. There was no stiffness, just intense pain in my shoulders, arms, and hips It was not something I would have been willing to continue living with if I had not found treatment.
Now that I am on prednisone (20mg/day), the pain is worse in the morning (about a 3 or 4 out of 10), and starts to let up around 2 pm, finally going down to something like 2/10 by late evening. Piece of cake compared to what I had before. But it's not ideal - I used to exercise regularly and be very active outdoors. I'm reduced to taking gentle walks.
It's not clear to me that my rheumatologist understands how severe my case is. She did not interact with me until I had already been on prednisone for about 5 days - my PCP made the original diagnosis and gave me a prednisone prescription, then referred me to a rheumatologist for long term treatment. The rheumatologist is already talking about "tapering" while I'm still in a fair amount of pain! Terrifying! (My PCP assures me that won't happen.)