I have been suffering from PMR for 4 years now. I was initially on prednisolone and have ended up on methotrexate (20mg weekly) via about 15 months of self injecting with tocilizumab. My ESR levels dropped to normal while taking tocilizumab but have risen again to 40 since the trial of tocilizumab stopped.
I think I have been very lightly affected compared with other sufferers as after about 2 years I was able to start running and can now run 21km albeit a lot slower than before.
My question to you is whether anyone out there has actually fully recovered from PMR as there don't seem to be any replies from people who have done so. I would love to think that one day I will no longer suffer from this disease. Thanks.
Polymyalgia Rheumatica sufferer?
Question posted by donrferg on 5 July 2021
Last updated on 5 July 2021 by adnoira
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I have been there 9 years. The first year was the only one I got really affected. I could not raise my arms or get up from a chair without help. I used prednisone because my stomach could not tolerate methotrexate. I was in a very good physical shape at my 60 years which is when it all started. My hobby was dancing and I did it since I was 14. Guess this helped me a lot because I refused to be impaired. I practiced TaiChi and got acupuncture, plus massages which stood me up and looked like it was going away but it wasn't. I still don't know anybody who is in remission from this illness. The prednisone made me gain 56 pounds so I could not go back to dancing. I used to dance flamenco and if I did it with this weight, I might break my knees or ankles. But I lead a regular life, no more pain. I am still on 5mg of prednisone daily and trying to cut down without my sed rate going up which is what usually happens. The pain left two years ago. Maybe I'm in remission, I don't really know but my doctor says as long as the sed rate goes up, you still have it. The sed rate or sedimental rate you get from a blood sample at a lab and it lets you know how well are your tendons and connections from inflammation. This illness is an inflammatory one and attacks neck, shoulders and hips and is a cousin of rheumatoid arthritis, worst, I would say. My sed rate the first time I went, was 90. The limit is 30. Now fluctuates between 50 and 40 and that is why the doctor says I still have it.
Related topics
polymyalgia rheumatica, methotrexate, prednisolone, tocilizumab
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