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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
What a range of experiences we have all had with PMR, and it is distressing to hear that some folks have difficulty getting timely and helpful care. My experience has been very different and I think I should give a shoutout to Family Medicine/UIHealth in Chicago. My symptoms appeared just as the pandemic was shutting everything down early 2020. I was concerned that my body was taking so long to recover from exercise, that I was increasingly achy and stiff in the morning, and then all day, and my go-to yoga for lower back did not relieve pain. I had a telehealth appointment with my regular doctor and described my symptoms and experience over the phone. I thought I had Lyme disease. My doctor said, “you have PMR, I’ve never seen it before but your symptoms and profile are clear indicators.” She prescribed prednisone and two days later I walked a 5K for a virtual fundraiser.
After several months it was time to taper from a high of 15 mg daily. All was fine until I hit a wall at 7.5 mg, when my doctor referred me to specialist rheumatologist. She prescribed methotrexate, which gave me a lot of anxiety to take such a serious drug, and we continued the taper. My regular doctor and the specialists have all be extremely knowledgeable and helpful. I am so sorry that all in this community have not had such a good experience. There is already such variation in our symptoms, interaction with other illnesses, and reaction to treatment. Sending warm thoughts to all.
Replies to "What a range of experiences we have all had with PMR, and it is distressing to..."
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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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.