Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

So glad to have found this discussion forum. I was just diagnosed with PMR last week ( March 2022) and I have so much to learn. I have been started on prednisone 20 mg a day (10 morning and 10 evening) and also a muscle relaxant I can take at bedtime. I was in pain and stiffness for about 8 weeks before the diagnosis. I was prescribed Melaxicam (an Nsaid) and physical therapy during that period but with absolutely no relief, of course now I know why. I see my doctor in two days to see how I am progressing. The main thing that is somewhat worrisome to me at this point is that it seems that some people react immediately and almost completely to the prednisone within a few days indicating that they feel 90-100 percent better. I am
on my fifth day and while I do feel much better, I am certainly not back to pre PMR. The most wonderful relief has been that I do not wake up in the night after only a couple of hours of sleep with the dreadful pain in my shoulders and the feeling that my arms and shoulders are "locked " and I can't even move. However, I do still have some pain, some milder stifffness, trouble sleeping at night, and still having trouble with my shoulders and arms hurting when trying to get dressed, carry things, get a pan in and out of the oven, etc. Wondering is this is typical for some of you that the prednisone isn't an instant relief to all the issues. Thank you for any insight and I will continue reading this forum.
By the way, this is my 2nd autoimmune disease, I was diagnosed with Graves disease about 18 yrs ago but it has been in remission for about the last seven years.

Hi @cckelly, You're right, most people with PMR do respond to prednisone pretty quickly with a miraculous decrease in symptoms. I had PMR and GCA for a year before diagnosis. Initially, I tried Physical Therapy with no relief. I was first diagnosed with PMR and put on 10 mg of prednisone. The Rheumatologist asked me by what % my symptoms had decreased and I said about 50%. I still had a very stiff neck, with pain in my head and short stabbing pains in my face from ear to nose. He increased the prednisone to 40 mg. I had a temporal artery biopsy a few days later and was positive for Giant Cell Arteritis. The symptoms I was experiencing disappeared on the higher dosage of prednisone and I started to taper down by 5 mg every two weeks. Do you have any head, neck pains, tender scalp, difficulty seeing or chewing? If so, you could have Giant Cell Arteritis and need more prednisone, at least initially.
I also have osteoarthritis and tendonitis in my right shoulder, which has not been eliminated with prednisone - so I do PT, take tylenol and use an infrared heating pad to help with that. Wishing you the best, Teri

welcome. This is an amazing group of fellow travellers ! I have benefited from so many insights and support. From my understanding because PMR diagnosis is “non-specific” and treatment is a very personal journey. Please hang in there; I would love to hear how your next appt goes

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?

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?

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 ?