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

Regarding pain in the hands, I have had burning, swelling and pain in the hands since my diagnosis of PMR in April 2022. I was on 40 mg of prednisone in the hospital and came home with 30 mg. I am now down to 10 mg, and as I have tapered, the symptoms in my hands have gotten worse. I saw my rheumatologist last week, and he said (and I am paraphrasing) the hand involvement is not PMR, but is rheumatoid arthritis, and that PMR can lead to RA, though not common. The higher doses of prednisone masks the RA, but as one tapers, it becomes more evident. He indicated that there are better meds than prednisone to manage the RA.
This was not the news I wanted to hear, and I went through denial, frustration, anger, and finally acceptance and motivation to keep moving forward. This process all happened in the doctor's office and on the trip home with my husband. I feel fortunate that my husband let me vent without giving me advice, and by the time we got home we were able to find a little humor in our situation. I have been prescribed hydroxychloroquine for the arthritis and will keep you updated on its impact.
Thank you all for your posts. This site has been incredibly helpful.

I also experienced a PMR flare almost immediately after receiving the Covid vaccine. I took prednisone which worked very quickly to relieve the symptoms and then I was able to successfully taper off over a three-month period. I am now in remission. I agonized for weeks over whether to have the booster shot. My rheumatologist opined that if I did contract the virus I would have a worse outcome because of my reaction to the vaccine and thought I should go ahead with the shot and take prednisone again if needed. With much trepidation I scheduled the shot and was very pleased when I did not experience another flare of PMR. Later on, I did come down with the virus but had almost no symptoms. Everyone's journey is different and each individual must weigh the options and try to arrive at the best decision. I wish you luck and hope you achieve remission soon.

I developed PMR after my Pfizer booster shot for Covid. I had never reacted to immunisation before. I had instant results with 10 mg prednisone and decreased by 1 mg per month. I am down to 1 mg tomorrow and have to decide whether to get another Covid booster and/or flu shot. Any experiences to share out there? Thank you.

I also developed PMR seven days after my 2nd Moderna booster. No doctor will say that there was a connection but neither will they rule it out. I decided against a flu shot or another Covid booster at present. I started 15 mg of Prednisone in September and am currently at 9 mg. I will see what my rheumatologist says in March. Meanwhile I’m being careful with crowds and wearing a mask when necessary. I’m just nervous that vaccines right now will cause a flare up.

I don’t know about a connection between vaccinations and PMR, but interestingly PAXLOVID removed all of my PMR symptoms for the short time I took it after contracting Covid. I reported this outcome to my rheumatologist. It will be interesting to see if PAXLOVID at some point replaces, or supplements, steroids.

I can’t tell you how thankful I am for this group. I’ve learned so much by hearing others stories. In early 2022 I was initially diagnosed as having Trapezius muscle strain. A week of Prednisone knocked out the pain but the pain came right back. In addition I had hip pain. Couldn’t get out of bed. Couldn’t get off the toilet. Can’t put on my socks, etc. Take an Advil in the morning and eventually I could function ok for the rest of the day. Finally blood tests confirmed that I had PMR as I had all the classic symptoms. I started on 15mg of Prednisone in April 2022 and I taper 1mg each month. I will be tapering down to 8mg this week. I am starting to understand my moods and why I am so pooped at night. I didn’t think in my early 70’s that I would have to temper my exercise. I’ve managed my weight, but the osteoporosis side effect is my main concern. Thanks to everyone for all of the information.

I also experienced a PMR flare almost immediately after receiving the Covid vaccine. I took prednisone which worked very quickly to relieve the symptoms and then I was able to successfully taper off over a three-month period. I am now in remission. I agonized for weeks over whether to have the booster shot. My rheumatologist opined that if I did contract the virus I would have a worse outcome because of my reaction to the vaccine and thought I should go ahead with the shot and take prednisone again if needed. With much trepidation I scheduled the shot and was very pleased when I did not experience another flare of PMR. Later on, I did come down with the virus but had almost no symptoms. Everyone's journey is different and each individual must weigh the options and try to arrive at the best decision. I wish you luck and hope you achieve remission soon.