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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my life would be over in few months. Like most of you I can't overstate the pain & stiffness in my shoulders, hips and knees. Went on 20mg prednisone & 200mg plaquenil (hydroxychloroquine) and was saved. Never had any side effects and gained no weight. Attempted to taper off early last summer and quickly discovered that was not going to work. Finally tapered off last September. Still suffer from tightness and shoulder pain occasionally. When it flares badly I'll take the prednisone for a couple days and get back to "normal". Normal being stiff most mornings till I do my stretches and exercises, some days worse than others...
When originally diagnosed by my wife's GP (had no Doctor, never been sick), I was under the impression this would last six months to a year. After reading some of the stores I now realize this may be a long term deal. That did not make my day. FWIW, I'm 68, very fit, active and would like to keep it that way. So far, so good but, as you all know, it can be a struggle. Received the Pfizer shots a month ago with only feeling a bit "wonky" after shot two. That's about it, would be happy to answer any questions or inquiries. Wish all of you the best of luck... Alan P.
Replies to "Hello everyone, thought I would share my experience with PMR... Diagnosed 12/1/19 when I thought my..."
Hello Alan @alanmp, Welcome to Connect. Thank you for sharing your experience with PMR. That first time it hits you does feel like your life is close to being over. I think you have the best mindset to deal with PMR. Lifestyle is key - stay active, eat healthy and take it one day at a time. I'm 77 and have had 2 bouts with PMR. First one in 2007 and it lasted until mid 2010 when I was finally able to taper off of prednisone with just minor aches. It stayed in remission until mid 2016 and I went back on prednisone for a year and half until I could again taper off with little or no pain. I'm hoping I never have to deal with it again but who knows so we just have to take it a day at a time, one step at a time.
If you don't mind my asking, what brought you to Connect? Were you searching for some answers?
I got my first bout when I was 57, 2 years on prednisone. It recurred about 12 years later. I came off prednisone in 10 months. I realize that was a mistake as It recurred again 10 months later. I have now been on prednisone for 15 months. Currently on 5 mg as a base, occasionally 6. Tried to get to 4 but unsuccessful. I do stay active, my husband and I walk an hour a day, do a zoom aerobics class. Pre-pandemic, I did a lot of grandchild care and hope to get back it it. Don’t like to be on prednisone, but it makes a normal life possible. I learn a lot from forum and others, especially how long it takes to go into remission. I am currently 74 and tend to feel I will be dealing with this a long time
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I think we all may have thought it would be a quick fix Alan but I fear it will be something most of us will have to live with. Not what any of us want but life is what it is. Keep safe and keep active. 😁