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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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My story is similar to yours. However, my rheumatologist diagnosed me with PMR and I had textbook symptoms. I believe this was an inflammatory response to a mild case of COVID that I had in late Dec. 2022. After several weeks on prednisone, the rheumatologist changed my diagnosis to inflammatory polyarthritis due to the swelling and pain in all of the joints in my hands. He stated the arthritis had nothing to do with PMR. He prescribed hydoxychloroquine and indicated I would be on a medication for arthritis for the rest of my life. I am tolerating the hydroxychloroquine well. I have less swelling in my hands, but they continue to hurt and make daily tasks difficult almost all the time.
I wonder, do I have both PMR and arthritis? I continue to have achiness in my muscles when I sit or be still for any length of time. That seems more like PMR than arthritis to me. Is the arthritis part of my inflammatory response to the COVID infection? If and when I can reduce the inflammation will the arthritis subside?
I have posed these questions to my rheumatologist and await a response.
Do any of you have experience with these kind of issues? I am interested in your outcomes.
It is so nice too hear a positive story about the medical care you have received. I would also like to praise my care at the Univ of Iowa and the VA hospital in Iowa City. I had the same rheumatologist, opthalmologist and primary care doctor for many years. Other medical specialists were consulted whenever there was a need. Many of the doctors who currently care for me at the VA also work at the university.
I have been treated for several autoimmune conditions for the past 30 years. PMR was diagnosed about 15 years ago. Overall, I am extremely pleased with all the care I have received. When one is in pain it is all too easy to be critical of the people who try to help.
In retrospect, I'm sometimes amazed that I'm still alive! In any case, I had great care. I'm alive and doing reasonably well. I never felt like I was left alone with some terribly painful conditions and needed to fend for myself.
I took prednisone for longer that I care to admit. It wasn't anyone's fault and prednisone did relieve a lot of pain. I just glad my doctors encouraged me to taper off while prescribing prednisone when I needed it. My doctors clearly wanted me off prednisone but didn't want me to be in pain. My doctors never quit trying to find an alternative to prednisone. I have been off prednisone for the past few years and everything seems to be going in a better direction.
My current treatment isn't FDA approved for PMR but it sure seems to work for me. I'm so happy that my doctors were willing to try other options. It was very discouraging to me when people would say prednisone is the only option for PMR. It wasn't helpful to hear that doctors are stupid and don't know how to treat PMR.
PMR is difficult to treat and long term prednisone isn't a great option in my opinion. I took prednisone daily for nearly 13 years for PMR and other things. That doesn't even count the intermittent high doses of prednisone I took for problems diagnosed before PMR.
Autoimmune problems are complicated medical problems and there isn't an easy solution to this kind of medical problem. That doesn't make anyone stupid and the facts are, long term prednisone does come with significant side effects.
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2 ReactionsIt is possible to have both inflammatory arthritis and PMR. I have multiple autoimmune disorders. Having one autoimmune disorder doesn't exclude a person from having another one. In fact, it is more likely that you will develop another one over time.
My original diagnosis was more than 30 years ago. At the time, my diagnosis was called Reiter's syndrome but the name has been changed to Reactive Arthritis.
https://www.aafp.org/pubs/afp/issues/1999/0801/p499.html#:~:text=Reactive%20arthritis%2C%20also%20called%20Reiter's,of%20patients%20with%20reactive%20arthritis.
"Dr. Reiter" did human experiments during World War II and the syndrome no longer bears his name. The syndrome is now call "reactive arthritis" because it is triggered by an infection.
I see no reason why a covid infection can't trigger polyarthritis. I was diagnosed with PMR about 20 years after being diagnosed with reactive arthritis. My rheumatologist said it was unfortunate to have both PMR and inflammatory arthritis.
From personal experience, I would say it is extremely difficult to distinguish one from the other. My rheumatologist asked me if I had muscle pain or joint pain. When I couldn't say definitively, she seemed to understand that it was difficult for me to know. She based her diagnosis of PMR on other things. PMR wasn't based on a fast response to prednisone because reactive arthritis responded the same way. However, my rheumatologist wanted me off prednisone in the early stages of PMR so she could see exactly what symptoms I was having.
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2 ReactionsI'm not an anti-vaxxer by any means, but since I believe my PRM was triggered by my second booster, and from what I've read, I am reluctantly forgoing any vaccines or boosters in the future.
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1 ReactionA blood test soon after I developed (very severe) PMR inflammation showed all my cholesterol levels were dramatically down.
Total cholesterol 260 mg/dl => 160 mg/dl
HDL 85 mg/dl => 47 mg/dl
LDL 160 mg/dl => 97 mg/dl
Triglycerides went up 60 mg'dl => 82 mg/dl
Curious if anyone had a similar experience and can speculate on why it happened. I can't find any explanation on-line.
Thank you for your thoughtful response. I greatly appreciate your insights.
That is so interesting. I also had low cholesterol numbers when I was first diagnosed with PMR. I remember commenting to my doctor about it, but she had no explanation.
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1 ReactionHi had a similar situation (big improvement in cholesterol levels). My GP monitors every 3 mos. I had it done Nov and it was particularly bad. Then in Feb it was greatly improved. Few factors to consider I have improved my diet and exercise routines during that time. I do something called Float Therapy that is known to lower BP and cholesterol. I also was diagnosed with PMR in early Dec but noticed symptoms in Nov. I also lost about 7-8lbs since Nov which I thought was due to all my hard work, but since learned it happens with PMR (lol). I will just go with it was a combo. Anyway weight lost probably helps values, too.
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2 ReactionsI had monthly Actemra infusions for 1 year, tapering to every other month for 1 year and now I'm getting infusion every 3 months. My blood is tested every 3 months. I failed to mention that I've also been treated with physical therapy for my hips and shoulders. I have found that my daily movements are much better when I do the prescribed stretches with resistance bands each day. I live in NW Wisconsin so the cold months are the most difficult.
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4 ReactionsI've had all of my covid shots, boosters. I've tested positive for covid twice, in '21 and '22. I lost my taste and smell and my hair fell out in handfuls from the '21 covid infection, which they now call long haul covid. I haven't noticed a difference with the PMR/GCA before covid vs. after covid.
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