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← Return to Length of PMR condition
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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.
Replies to "Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I..."
I'm a little frustrated right now too. I'm about ready to give up on the healthy diet. I can't see that it's made any difference and I just force myself to eat. I'm in the same cycle with exercise, pain, loss of muscle tone. I never thought about the stress impacting the PMR but now I'm wondering if that's what's behind this mini-flare. The good news is that I've been on Methotrexate for several months now, prednisone down to 2 mg, and I haven't had any nausea. The only side effect I've had is hair thinning. It really bothers me but I keep trying to put it in perspective. I'm still ready to do just about anything to get off the prednisone.
Your story sounds like what mine will be... had symptoms for months but didn't know what was going on (thought maybe I wasn't exercising enough! but holy cow when I exercised I was in agony!) And now... my muscles are wasting away, I can't do half the stuff my body needs. And my job is very stressful... I am fully aware that my body is telling me I shouldn't be working this hard. But I can't change at least for a couple of years so... anyway, i appreciate you sharing. Also, why do rheumatologists say one year??? I was so disappointed when i realized I was never going to be able to taper in one year. But at least now I can manage my expectations.
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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! ❤️