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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
I was diagnosed with PMR a year ago. Had been doing ok on a fairly low dose of prednisone. Had a flare up and increased dosage to 10 mgs for a few weeks. Began to have symptoms of GCA. So dosage was increased to 60 in preparation for GCA test. Wow, I felt great. Nothing hurt. My test was negative. I wondered if anyone has had these symptoms and tested negative. It can be such a scary thing. I still have the strange head pain and tingly scalp. My vision is a little off as well. Have begun to taper back down. Am at 40mgs a day now. Dread having pain return eventually as I feel so good now.
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Good for you @patzmar !! I am so happy you received the medical care you needed. I thought I was the only person on the planet dealing with, what I call the Mystery Disease. No one knows much about it…
What kind of test did you take? Based on your continuing symptoms I'd still be suspicious. It can be hard to diagnose GCA.
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Typically, if you are on the right dose of prednisone, for your PMR, you should not be in pain. You don't say what your dose was before the suspected GCA. But for PMR, you shouldn't need the same high dose that you would get for GCA. Also, I read in Kate Gilbert's book recently, that a study done in 2012 found that 28% of people whose biopsies were negative, still met the criteria of the American College ofRheumatology for the classification of GCA. You might want to discuss this with your doctor. Did they do an ultrasound before they did the biopsy? I'm just wondering if that would have shown anything. I'm not a medical expert btw, so I don't want to upset you. It's just the questions I would be asking if it were myself going through this. I wish you all the best.