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

I am on my 3rd bout of PMR. When I was in my 50’s, I was very healthy so I could easily know what effects PMR was having on my body. Now I am 74 and always have to ask if a symptom is PMR or something else. Currently going from 5 to 4 mg of prednisone and having odd problems (knee pain, sciatica pain, hip pain). I have been on 5 since November and it seems my body just does not want to go to 4. I have learned that what every doctor is giving is their opinion. I haven’t found many research studies. I have a good rheumatologist and Internal medicine doctor who listen to me and admit that much is not known about PMR. I do get my eyes checked every 6 months, because the first time I had it, the pressures went up and I became a glaucoma risk. So far, so good. I try to walk daily, but today the high temp is 0 degrees with a 17MPH wind and slippery sidewalks. I believe I will stay inside. Like you, I have learned a lot from this group.

@virginiaj, When tapering got a little tough for me I bought a pill splitter and also got the doctor to prescribe 1 mg and 2.5 mg tablets of prednisone. Made it easy to go down in 1/2 mg doses.

John, that's a good idea, splitting your Prednisone into smaller doses. I had to be taken off Prednisone suddenly because my WBC and neutrophils went dangerously low. At the same time, the doctors took me off Actemra for my GCA as well as Clozapine, both of which were contributing to the dangerous lab results. What a nightmare. It was a six-week period of withdrawal at the time. All three of those meds cause terrible withdrawal if not tapered slowly. I'm back on Actemra now, but only every 2 weeks rather than weekly. I have lab work once a week and the docs are watching very closely to be sure that never happens again. If the lab results are bad, I have to back off the Actemra until the counts climb up again. I have more painful GCA symptoms due to the lesser dose of Actemra and the lack of Prednisone, but at least I lived through the withdrawal! I wasn't sure I would, at the time. lol
Thanks for all your online support.
Laurie

I am a 68 year old male. I was diagnosed with PMR about a year ago. My pain started a few days after a Prevnar 13 pneumonia vaccine. Initial PMR episode was tough and since then my MD has been reducing my prednisone dose. My highest dose was 40mg and I am on 6 now after pain and inflammation got worse at 4.

Has anyone had an experience like a vaccination that triggered PMR for the first time?

I started with PMR after my second ever flu shot. My rheumatologist suspects it’s coincidental. I’m not convinced. However I did get dose #1 of the Covid vaccine with no particular problems. And my pneumonia shot was uneventful

Hello @mr11344, Welcome to Connect. I see that you found the discussion and were able to connect with other members discussing a vaccination that triggered PMR - PMR (Polymyalgia Rheumatica) induced by flu vaccine: https://connect.mayoclinic.org/discussion/kristen/

Have you been able to discuss your experience with your rheumatologist to see if they might have some suggestions for a tapering schedule or something else that might help?

My first bout of PMR started the morning after I did a 5-mile run/walk. I had been exercising daily, but tried to go faster. The next morning I was really stiff, but thought it was normal stiffness after a new activity. It got worse and worse. Eventually I couldn’t turn over in bed at night and riding in a car left me so stiff I couldn’t move at first. I tried stretching, etc before I finally saw my internal medicine doctor. I was working in a small clinic so talked to her before my appt and she ordered a lot of labs. Highly elevated sed rates, classic presentation led to immediate diagnosis and I saw a rheumatologist that day. I was on prednisone for 2 years. My latest bout came about about 3 weeks following a cortisone shot in my knee and removal of 60 cc’s of fluid. Seems to be related. I am now on about my 14th month of prednisone, trying to be patient about decreasing. It never seemed to be related to vaccines as I went 12 years between bouts and had flu vaccine yearly, Shingrix and pneumonia vaccines with no ill effects. It is a strange thing to have. I like this forum, as no one else I know has this and your posts help me.

I am on a 20 mg prednisone regime. Wondered if anyone has the following reaction to taking the drug: Within 1 hour my muscles tighten and I feel rigid which lasts a good portion of the day? Could it be primal myopathy, drug induced? The problem is what is the option since I need the drug for my PMR?

Like you, I thought exercise was the culprit. Soon after I turned 66 last year I did an intense session of sliding lunges for the first time. A week later soreness and stiffness began and I (and my PCP) thought I had tiny tears in my thigh muscles. It never went away and got worse. Getting out of a car, in and out of bed, up and down in any form was painful and sometimes impossible. Extreme fatigue. It was puzzling. It took 4 months for me to get diagnosed after my upper arms and shoulders started to hurt as well.
My PCP ordered labs and inflammatory markers were high (SED rate 84). Prednisone, while problematic, gave me a normal life again, for which I am grateful. I have been on it since diagnosis in late October 2020 and am on 10 mg now. I hope the rheumatologist will lower it when I see him in March.
For so long I wondered "what's wrong with me?" It is such a strange and debilitating disease. Never felt like that before. I am also somewhat relieved it wasn't the intense exercise at all! In fact, I rejoined the gym and have started to exercise again, thank God.
In my case the possible trigger was loss of a loved one, loss of my dog, and lots of peripheral stress. I have read that trauma can trigger autoimmunes.
I appreciate this forum as well. No one else knows about this disease or can understand what you've gone through. Helpful to share info. Thank you for sharing yours.

@glendal, I don't think I've ever heard of a side effect of prednisone being muscles tightening up. It took away any pain and stiffness I had within hours of my taking the prednisone for both my occurrences of PMR. Have you discussed it with your rheumatologist?