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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
My name is Tricialynn and I was diagnosed with Polymyalgia rheumatica in the fall of 2020. My pain radiated to
My neck, shoulders, arms, lower back,
buttocks and left leg. My doctor put me on 20mg of prednisone and the relief was immediate. Because I am type 2 diabetic my blood sugar levels were quite high while on the prednisone. My endocrinologist put me on insulin injections which controls my blood sugar levels My rheumatologist monitors my PMR every 4 months and has been tapering my prednisone medication. Once she reduced the prednisone to 9 mg I found that the muscles in my knees and calves ache constantly. My rheumatologist has sent me to a sports medicine doctor and he has sent me for X-rays on my legs and a CT Scan on my back. I have mild to moderate arthritis in my knees. I have difficulty walking as the muscles in my knees and lower legs tighten up and ache. Have others experienced this kind of problem as their prednisone medication is reduced?
Replies to "My name is Tricialynn and I was diagnosed with Polymyalgia rheumatica in the fall of 2020...."
Hi @tricialynn, my rheumatologist told me that if I tapered prednisone and symptoms came back I should go back to the previous dosage. I've just gone back up to 4mg from 3 mg because my stiff neck (a symptom of Giant Cell Arteritis) returned. PMR and GCA are forms of vasculities. Our autoimmune systems attack our blood vessels and veins, decreasing blood flow. When I had full blown PMR my legs were incredibly stiff and no amount of exercise or stretching, etc. would help. Have you communicated your change in sympoms to your doctor and discussed increasing prednisone back to the level you were free of pain for a while? All the best.
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I have been doing an ultra conservative wean over months and got down to 3 mg. A period of stress caused a flare up and I went back up to 5mg. This is my 3rd round of PMR all about 11 years apart. My current challenge is lower leg muscle weakness, and feeling unsteady. Not the vertigo type, just the feeling my legs cannot be trusted. I have lost my balance a number of times, but managed not to fall. At 78 hrs young with osteopenia I am finding I am Confidence in myself, something I have never experienced before. Suddenly feeling rather old and doddery. Would love to hear from others and their experience. I am speaking with my doctor in a week or so but I think my main concern is is this temporary due to prednisone or is this a degenerative part of the disorder and prednisone ?