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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.
Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?
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Anyone taking celebrex along with prednisone? My dr is beginning to taper pred and has added celebrex for pain. I’m wondering if the pred should be increased as opposed to tapering. I’ll only have been on 15 mg for 30 days, then next week to 12.5. I’m getting much more pain this week. I asked her this question and she said we need to start the taper and add the Celebrex.
I should add that "empiric treatment" is the best approach sometimes. My rheumatologist was aware of this but there wasn't much at the time in the way of biologics to treat reactive arthritis. There still aren't any biologics that are FDA approved as far as I know.
Sulfasalazine was used historically because the empirical evidence suggested it was helpful for cases of spondyloarthropathy. Sulfasalazine was my first medication too when I was diagnosed with reactive arthritis
Funny story about sulfasalazine because after starting it, I had a follow-up visit with my medical doctor after a couple of weeks to see if the pain was improving. I told my medical doctor that he was a "miracle worker" because after my first dose of sulfasalazine, the pain stopped. My medical doctor said sulfasalazine wouldn't have worked that quickly so it must have be a coincidence that the pain stopped. Pain caused by reactive arthritis can stop suddenly for unknown reasons. My pain recurred again but that is another story.
Several years later I was thinking about that day my ophthalmologist was treating my uveitis. Then it occurred to me, at one stage, he gave me a handful of little white pills but didn't say what they were. I do recall him saying the pills would help to decrease the inflammation inside my eye.
I had never taken prednisone before so I had no idea what those little white pills were. I'm almost certain I received my first dose of prednisone that day and didn't even know what it was. It wasn't the sulfasalazine that stopped the pain, it was the prednisone that my opthalmologist gave me. My eye doctor was the miracle worker and not my medical doctor.
About 20 years later and huge amounts of prednisone, my rheumatologist didn't know what to try in order to help me get off prednisone. One day after reviewing my ancient medical records., she said it was documented that I had an "excellent response" to sulfasalazine and she wanted to know what I recalled about it.
I didn't have the heart to tell her what I thought about sulfasalazine. I just said the pain mysteriously stopped suddenly when I was taking sulfasalazine but it was making me nauseous so I stopped sulfasalazine. I didn't say that I believed the prednisone from my ophthalmologist actually stopped the pain.
Does anyone think the weather affects your stiffness?
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2 ReactionsYup, especially the winter weather for me and extreme heat during the summer although the cold bothers me the most.
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3 ReactionsHi Richard, I am sort of the opposite - morning is when I'm most achey and stiff. On good days I will do a short workout (30 mins or less.) And similarly, by afternoon I need a nap and usually 30 mins is enough to get me through the rest of the day! That said I've always been a bit of a napper as was my mom.
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4 ReactionsHi 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.
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3 ReactionsI'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.
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1 ReactionI 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.
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2 ReactionsUgh Richard, so sorry you've flared. Hope you get relief soon. 🙁
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2 ReactionsI associate stress with my initial experience with PMR. But I have to ask, is there any correlation of your flareups with COVID vaccinations?