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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 all, I am new to the group and grateful to have found it. My symptoms first started nine years ago when I was 44 years old. I had rapid onset of bilateral pain and stiffness in my hips then shoulders then an old knee injury swelled up and made it hard to walk. I showed no elevated blood levels, PMR was ruled out by two different rheumatologists b/c I was too young, so I was diagnosed with "you're just getting old and have a bad knee, try massage and PT." (After two sessions, the PT proclaimed that whatever I had was systemic.)
Struggling to work and care for my six year old, I found a doctor who suspected lyme despite a negative test and started me on a cocktail of antibiotics for 10 months. The symptoms all subsided, returned four years later, more antibiotics, subsided again. I was always skeptical of the lyme diagnosis but had no other answers. I then got COVID in spring 2022 and the symptoms returns. This time I showed elevated CRP levels and started prednisone. 20 mgs eliminated the symptoms and the taper has been ok until I've tried to go below 9mg. I'm on 8.5mg (while waiting for approval of Kevzara) and seem to be in the midst of a flare, I think due to stress - two competing work deadlines and staying up to 2am to finish slideshow for kid's sports banquet :-/
Am curious to hear from others what seems to cause flares and how you handle them? I've been trying to get a lot of rest but really don't want to increase my pred dosage.
Replies to "Hi all, I am new to the group and grateful to have found it. My symptoms..."
I think infections caused flares of something although I don't think the flares were always a PMR flare. I was diagnosed with "reactive arthritis" which derives its name from a reaction to an infection.
Prednisone would relieve these painful flares of reactive arthritis but I often received antibiotics in addition to prednisone. Antibiotics alone were never enough to stop the systemic inflammation. I also needed moderately high doses of prednisone and that would relieve the pain quickly. I tapered off prednisone in a one or two months after each flare of reactive arthritis.
I still have reactive arthritis. It isn't likely to ever "go away" or "burn out" like PMR is said to do. Reactive arthritis usually occurs at a younger age and I was diagnosed at the age of 32.
Twenty years later, at the age of 52, something different happened. My rheumatologist was confused by my symptoms which were entirely different than anything I had experienced before. I was diagnosed with PMR on top of reactive arthritis. I still needed 40 mg of prednisone to control the pain but I never could taper off prednisone for 12 years after that.
I had more frequent flares along with chronically elevated inflammation markers. The flares never did go into remission in spite of moderately high doses of prednisone. My rheumatologist thought prednisone and other immunosuppressive medications were putting me at risk for infections. Recurring infections aren't a good thing when you have reactive arthritis.
My rheumatologist said my primary diagnosis PMR which never did burn itself out until a biologic was tried. A biologic allowed me to taper off prednisone and now I don't have so many infections. As long as I don't have infections then reactive arthritis stays quiet.
I associate stress with my initial experience with PMR. But I have to ask, is there any correlation of your flareups with COVID vaccinations?
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I've been trying to go down on my Prednisone. To that effect, my rheumy started me on Methotrexate (1 X weekly, 10 mg at first and now 15). I went down from 15 mg Prednisone to 12.5 to 10. However, my PMR has flared up significantly, again with the upper and lower body aches and stiffness. So I've gone back to 15 mg Prednisone again and we'll evaluate whether to stay on MTX in another month. I do have Smoldering Myeloma and the doc thinks its a complicating factor in conrolling the PMR.