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

Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)
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@redboat

That sounds bad, @tsc. Sorry to hear it.

I also lost 8 lbs in the 3 weeks before I was diagnosed, and went down to 129 lbs (I am 5'10.5" so now very thin). My ESR was "only" 92 mm/hr, so yours was even higher! It's my CRP that reached very extreme levels, about 70x above the upper limit for normal of 5 mg/L. The pain was unbearable. So far, it seems I don't have GCA.

I really hope I don't get shingles!! That is supposed to be awful! I've also had the Shingrex vaccine.

With GCA, you must have had much higher doses of prednisone and had a different treatment than I am expecting. When were you diagnosed?

After more that 2 weeks, the 20 mg/day prednisone I'm taking still leaves me with significant pain throughout the day. It's worse in the morning. I was hoping for a better result, and the idea of "tapering" at this point is terrifying.

PS I'm a 63 year old male with a northern European background.

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Replies to "That sounds bad, @tsc. Sorry to hear it. I also lost 8 lbs in the 3..."
Teri | @tsc | Feb 18, 2023

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.

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