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

I was on prednisone for just about a year. I started on 20 mg, tapered weekly to 10 mg and then tapering 1 mg every 4 weeks. I’ve been off for about 2 months but am still suffering stiffness and pain every day. My rheumatologist said because my inflammation markers had decreased, I no longer had PMR and that some stiffness could occur for a “while”. Has anyone else experienced this? And for how long? Another issue is that my upper arms are really sore - can’t lift them over my head or extend them. I’m assuming PMR issue but will a chiropractor help? Am I having a flare? Do people go back on prednisone when having a flare? TIA.

That's about where I am, still on Prednisone, 5 mg. But sore arms, hands. I am wondering if the disease caused some damage to my arms and hands that persists after the inflammation has subsided.

My rheumatologist said it takes a while to recover, even after prednisone is finished. It’s been 2 months, though and some days it’s as bad as when I was first diagnosed. I’m seeing a massage therapist tomorrow - hoping he can do something about my arms!

I went undiagnosed for 6 months and my PMR started with a frozen right shoulder. I went thru physical therapy for 4 months. Had trouble with walking and no diagnosis from my primary doctor. Finally had an MRI after 5 months into therapy. Saw an orthopedist who diagnosed PMR. Immediately after getting a super shot for the shoulder I could walk much better. The orthopedist called my primary dr. to give his opinion. I’ve been on prednisone since, starting at 20mg and being reduced to 5 mg. That didn’t work well and the pain returned. I’m working on cutting down again, but doing better. Not happy that it took 6 months of pain and therapies that did not really help enough. I was very disappointed in the lack of diagnosis. I believe any dr who is a good diagnostician is worth their weight in gold.

If, like me, you suspect your PMR may have been triggered by either the influenza or Covid vaccine then you should research ASIA (autoimmune/inflammatory syndrome induced by adjuvants). The adjuvant (used to create a stronger immune response) may be a possible cause of PMR & it’s interesting that the studies suggest that “one size may not fit all”. I’ll be following this up with my GP. From what I’ve read there appear to be a number of different adjuvants that vary in strength. Reactions vary depending on our B and T cell balance.
The publication by PMC (pubmed central) is worth a read. Sorry I can’t copy the link here but it’s not possible as a new member. There’s other research out there too.

l spent the last 6 months (and a lot of money) going to the chiropractor because of my painful shoulders. l had NEVER heard of PMR until l had bloodwork done for another reason, and my Dr. immediately put me on 40mg prednisone. Which worked so well! Just kicking myself for not talking to my Dr. sooner. I had seen him because l was having weird heart palpitations that were scaring me. Wondering if that is related to PMR. Also l had been under a lot of stress, plus major lack of sleep. ln 2 months l have been able to reduce prednisone to 20 mg and am still symptom free.

I know about feeling I wasted time. I did keep telling my dr about the continuing pain and blood tests showed nothing. They still don’t. PMR is difficult to pinpoint and doctors don’t know much about it…at least that is my thought. I’m so glad you got relief.

So glad to have found this site. Initially doctors thought my leg problems were coming from my back. Had and injection and was 50% improved. Then it went to my arms. Got two neck injections and was significantly improved. Then to the hands and they said carpal tunnel. I had never heard of PMR but that should have been a clue to someone. When a doctor finally said MAYBE PMR and did the blood tests which were negative, he said definitely not. Talk about wasted time and money.

I had been feeling stiff for about two month and then, over a period of about two weeks, I was experiencing severe pain in my shoulders and thighs simultaneously on both sides of my body. (I understand "mirror pain" to be a hallmark of PMR.) The pain was the worst in the morning and it was excruciating to get out of bed. I found myself taking (and wanting to take) more and more ibuprofen to manage the pain. Thanks to the insight of a PA, I was diagnosed quickly and began taking 20mg of prednisone. I felt relief within 30 hours. I was then referred to a rheumatologist and my prednisone was reduced to 15mg after 4 weeks and then to 10mg after another 4 weeks. From there, the plan was to take one milligram less every two weeks. (I was told the tapering schedule is critical.) I was experiencing some discomfort and then I got COVID when I was at 6mg and this stalled the progression. Leflunomide was added to the prednisone and I was off prednisone within 9 months and also discontinued the leflunomide. I did have a minor flareup 3 months later and took prednisone at 10mg with a taper from that over a three week period . I have been drug free for 5 months. In recent months, I have been experiencing stiffness and minor discomfort after being stationary for an extended time, at night, and the morning. I am uncertain if this is “normal” and how things are going to be, or if I am heading toward another flareup.

My PMR was diagnosed quickly and I began taking 20mg of prednisone. I felt relief within 30 hours. I was then referred to a rheumatologist and my prednisone was reduced to 15mg after 4 weeks and then to 10mg after another 4 weeks. From there, the plan was to take one milligram less every two weeks. (I was told this reduction schedule was critical.) I was experiencing some discomfort and then I got COVID when I was at 6mg and this stalled the progression. Leflunomide was added to the prednisone and I was off prednisone within 9 months and also discontinued the leflunomide. I did have a minor flareup 3 months later. I have been drug free for 5 months. In recent months, I have been experiencing stiffness and minor discomfort after being stationary for an extended time, at night, and the morning. I am uncertain if this is “normal” and how things are going to be, or if I am heading toward another flareup. I do have full movement in my arms and legs.