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Length of PMR condition

Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (9)

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@dengland

Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I was a very active 58 who overnight felt 80. I started pred at 20 mg and am currently at 3mg. I tried Kevsara but had terrible injection site reaction so chose to stop it down, but it did seem to be helping. I have a very high stress job and have been under general life stress as well. I manage to function but am in daily pain with the typical PMR trifecta neck,shoulders and hips. I feel like my muscle mass is wasting away but when I try to exercise I pay the price and am smacked down. Something as simple and going in the pool to lesson the effects has hurt terribly for days after. I have tried limitation diets, they don’t seem to help. I will say that for me stress seems to be a driver. I took my first real vacation this year and by the end of the week was feeling minimal pain, it was the best I have felt since this journey began. I tried to tapper upon my return and it all roared back. My rumy wants me to go on Methotrexate, I really don’t want to. It is tuff on the liver, I enjoy wine as my stress relief, so not good. It causes nausea and takes 3 mos to even see if it might work. I would welcome any insight if folks have tried. I keep hoping that PMR will leave me one day just as randomly as it arrived. Sure wish the doc who said this will be gone in a year was accurate, alas I am coming upon my 3rd anniversary. I actively research and it seems there are a LOT of us who keep PMR for a long while sadly.

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Replies to "Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I..."

Hi @dengland, Your description of your PMR journey sounds similar to mine but you were a few years younger when you started. I held a very high stress job and even though PMR has forced an earlier than anticipated retirement, my pain has not gone away. I have tried diet and exercise to no avail and I often pay for minimal jaunts in the pool with pain for several days. I have had 3 Actemra infusions and am praying that relief is coming soon. I am impressed that you have been able to taper your prednisone dose because I am still at 19 mg after 2.5 years. Down from 25 mg. My hip and thigh pain become so ridiculous and inflammatory markers go off the charts at lower numbers. Praying that your solution is coming and that mine will arrived with the next Actemra Infusion. Biggest blessings! ❤️