That must have been so discouraging, @mzamyl. We just witness our lives getting smaller and smaller, so limited by pain and lack of energy. When I looked in the mirror, I looked like death warmed over. Before I was diagnosed with PMR, I had anemia, which made me very tired and Shingles, even after having the Shingrex vaccine. I was lucky to have a close friend, an infectious disease specialist, take an interest, review my labs, and tell me what tests to ask my PCP to order. He was really resistant, but I pushed him. My inflammation markers were off the charts, then, I started prednisone and had a temporal artery biopsy within a week. I wish you the best.

It's fortunate that you finally found a doctor who was on the right track.

My general practitioner had no idea what was happening to me initially which is not surprising since so little is known by the medical world about this condition. In desperation I undertook an enormous amount of reading up on literature from the Mayo clinic and other centres of excellence on the subject to help diagnose myself , then telephoned several clinics and hospitals to find a Rheumatologist knowing there was a 7 year waiting list. Luckily I found one who had just moved to this country. Arrogantly and with a touch of humour i suggested to him in my desperation that i may have PMR based on the symptoms i was /am experiencing . Following some tests to exclude conditions such as Arthritis and based on my symptoms he confirmed PMR , vaccine related and advised how best to treat and deal with the condition, then I really understood what i was dealing with. I take every day at a time and I’m thankful for life , a supportive husband and a wonderful lovable Tibetan Terrier . I’m on my 3 rd course of Prednisolone 5 mg daily and will start tapering again in a months time reducing by 1 mg every 4 weeks. As i mentioned in a previous write up I find Chi Gong Chair yoga meditation and walking my dog very helpful. I no longer think of assisted dying and much more positive about life but oh what a shock to suddenly loose control of one’s muscles and not be able to stand walk or take care of oneself . We await any new research on the subject. Cortisone / Prednisolone appears to be the first line of treatment for now with all its side effects but for me quality of life in the here and now is more important than longevity. Don’t expect too many answers from the medical professionals as the condition is not well researched and diagnosis/ treatment is based solely on exclusion of certain conditions and symptoms.

I was diagnosed with PMR (after being misdiagnosed with pain from OA). Then after nine months was told I was misdiagnosed again and that I do not have PMR. Now I am told to take my pain meds and basically the case is closed. Can you tell me how they diagnosed your PMR and if you’re in Minnesota who your doctor was so I can get a third opinion? Thank you