Hi Carley,

I am truly sorry to hear about your pain…. My diagnosis was basically the result of ruling everything else out and the 20 mg dose of Prednisone that relieved the pain and symptoms of PMR.

I had blood tests for everything the rheumatologist could think of. I remember some of the tests were so obscure that the phlebotomist did not know how to draw the blood for the tests and had to look up the proper way.

All tests came back negative accept the CRP and ESR which were elevated, but not so elevated that it ruled out Giant cell arteritis. I had a cat scan to see if there was something wrong internally… negative. Negative on lyme disease, RA, cancer, infection, lupus, sjogren's, MS, thyroid, and many other autoimmune diseases.

After so many years I can accurately detect the pain of my PMR. It’s not in the muscle, not in the joints, or the bones. It’s inflammation in the connective tissue. Ligaments and tendons. Especially where they connect to the bone. My muscles are strong, not affected at all. But the pain in the connective tissue is so intense that I cannot use my muscles and I have limited ROM. I also feel it in the connective tissue in my rib cage. Every breath I take and with the expansion of my ribs I can feel the pain. The tendons in my neck were so inflamed that I could barely turn my head to the side. I can feel the warmth of the PMR inflammation on my skin. It also felt like the flu because it’s systemic and the pain is very exhausting. I did have a elevated temp as well. And would often wake with night sweats.

As for advice on questions to ask you new provider… I’m not sure. I’m not a doctor, but the dosage of your prednisone seems high and too short of a duration to treat PMR. It’s been the case for me to start at 20 or 15 mg and reduce by 1 mg every two or three weeks until I get to 10, then reduce 1 mg every month monitoring the pain. If I flare up I go back up 1 mg for the month and start the taper again. It’s a long process to taper and get off the meds, but it can be done.

I hope your new doctor can provide you with answers and that your pain subsides. Keep us posted on your progress.

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