I would like people to know that the diagnosis could be something other than PMR. I have been living my nightmare for 2 years now. Mine started with the classic textbook symptoms for PMR, bilateral joint pain, first the hips (couldn't even roll in bed or get out of a chair) then progressed to the shoulders, then to other joints. I responded to prednisone like a miracle. My local Rheumy eventually tried to wean the prednisone and added methotrexate when my bilat shoulder MRI's ( I had developed bilat "lumps" on the clavicle bones) showed questionable Rheumatoid Arthritis, amongst multiple other possible diagnoses. I also had developed Prednisone Induce Diabetes and weight gain; I started oral hypoglycemics. I was sent to an Orthopedist, for my shoulder pain, he wanted to do bilateral shoulder replacements! I said, no thanks, not until somebody figured out what was wrong with me. ( This is the same doc who said I needed a total knee replacement, just 2 months before my PMR diagnosis. I always will wonder if I really needed that surgery). I went to a different Orthopedist who said I did not need shoulder replacements, I needed biopsies! Shortly after being on the prednisone, I developed these strange skin lesions, purpura, in of all places, the crotch. It was felt to be a side effect of the prednisone. Finally, I went to a Dermatologist who biopsied those skin lesions. Diagnosis came back as Amyloidosis. I immediately made an appointment with a specialist at the Cleveland Clinic, 2 hours away. He did multiple studies and found that I also had Multiple Myeloma, a Cancer! of the plasma cells within the bone marrow, causing bone pain. The Amyloidosis is similar, however, not a cancer, but also a disease of the protein cells of the bone marrow where abnormal protein cells deposit into multiple organs rendering them non-functional. Mine happened to be in the skin, and no major organs, that we can tell. My Rheumatologist at the Cleveland Clinic doubts I had PMR and feels that my Amyloidosis had deposited into the joints, causing all the pain, she finally got me off the prednisone. I went on to have 4 months of chemo followed by a Stem Cell Transplant a couple months ago. I developed complications during this treatment, was in ICU and subsequently developed kidney failure, stage 3.
So, I guess my message is, please seek out other professional opinions, don't hold back, even if they think you are nuts. It could be something other than PMR and hopefully, eventually, they will find what is causing all your symptoms, especially if your current treatment is not working or you continue to develop other issues as the folks above have experienced. Thanks for listening.