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

You are lucky to get the quick diagnosis. I had my first bout of PMR when I was 57 and like you was very active, aerobics classes, weights, etc. It actually started the day after I got my a very good time in a 5-mile run/walk. I didn’t get a diagnosis for 2 months because I tried to heal it on my own (unsuccessfully). I was on prednisone for 2 years and then it was in remission for about 12 years. I am 74 now and on my 3rd bout. My first rheumatologist warned my not to lift weights over 2 pounds due to risk of tendenitis. I did have tendinitis twice and had PT to heal it. I also tried acupuncture and had side effects. One acupuncturist told me to avoid acupuncture when one has an autoimmune disease since it helps the immune system and makes the autoimmune disease worse. I don’t know if PMR is autoimmune or not. Be patient in reducing prednisone.

First time user glad to know you all are there. Diagnosed with PMR November 2018 received low dose Prednisone 10 mg gradually tapered off last dose October 2020. Dr prescribed Methotrexate 10 mg November last year tolerated well but last three months developed constant tremors, and horrible taste and nausea after taking weekly dose. Lab tests well within good ranges. Fatigue is the main issue I am very fortunate to not have the long lasting pain, brain fog, depression and other associated symptoms that some of you have had. Good luck to all in the future. Michael

Hello @drlovegrove, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing your story with PMR. Nausea is one of the side effects listed under Methotrexate that you should contact your doctor immediately if it occurs.

Methotrexate Side Effects: https://www.drugs.com/sfx/methotrexate-side-effects.html

Was the Methotrexate prescribed for your PMR when you tapered off of prednisone?

I was diagnosed two years ago have been steadily slowly reducing pred. Have had problems at the low end I.e. going down from 2mg went back to 2 and have stayed ok that for few weeks and now without changing does have got more pain again for few nights so habe gone back to 2.5 mg. I wonder if anyone has experience in what factors cause such a pain increase on the same dosage. There has been no particular change that I can identify.

Yes, it's likely a slow build up of inflammation that your low dosage can't cover. The disease is still there. If 2.5 works to contain it, you could stay there for awhile. If not, you may need to increase your dosage.

Hello @drlovegrove, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing your story with PMR. Nausea is one of the side effects listed under Methotrexate that you should contact your doctor immediately if it occurs.

Methotrexate Side Effects: https://www.drugs.com/sfx/methotrexate-side-effects.html

Was the Methotrexate prescribed for your PMR when you tapered off of prednisone?

Hello—I was diagnosed with PMR in Aug 2019. Started with a blast of pred— dramatic results—could raise my arms, turn my head, get out of bed—a miracle!! Went on 20 mg pred—tried to taper off too fast—@ 11.5 had to go back up to 15mg to address symptoms. Now @ 10 mg—was on 10 mg when I received both Moderna shots—had flare 2weeks after #2 shot, but it was manageable & didn’t increase pred dosage. Just received results from antibody test & good news—I did develop antibodies!! Thought I’d pass this along. Take care.