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"Evolution" of Seronegative RA into PMR
Polymyalgia Rheumatica (PMR) | Last Active: May 30 8:30pm | Replies (31)Comment receiving replies
My 55 year old daughter has been to over 6 different concierge doctors and their multiple referees (bones, gut, fuzzy mind, paralyzing fatigue, etc- I may be forgetting some) in the past 12 years to try to “fix” her collection of life-altering problems ranging from bowels to ever-increasing wandering -joint pain to aphasia to days on end unable to leave bed (when it all hits at once). We live in a small VA town, but have finally gotten a first referral to a big city rheumatologist who says she has something called nonreactive rheumatoid arthritis, somehow complicated by having bad Covid 3 years ago. After quarts of blood tests, the doc (not a warm fuzzy communicator type, very brisk) wants her to go on methotrexate after first increasing, then cutting out completely her beloved steroids (the only meds that have kept her from suicide). Dr. Google immediately scared the crap out of her as regards the side effects of methotrexate, but the family has chivvied her along into agreeing to try it. She’s been jerked around for so long…Is this the Mayo group she could join that knows about situations like hers, and can anybody provide calming reassurances or hope to get her over this new high jump at the new horse show? We really need help-it looks like a long road ahead, and she is very afraid. Anybody able to suggest supportive contacts?
Replies to "My 55 year old daughter has been to over 6 different concierge doctors and their multiple..."
I tried methotrexate and have been off it for several months. I couldn't tell any difference. My rheumatologist wants me back on it although she agrees tests show it didn't help my combination of PMR and RA. I am tired of so much medication. Have other people been helped with methotrexate? I am on 5 mg of Prednisone and want to get off that too. She doesn't seem to have any other suggestions except more medication most of which is experimental.
Reactive arthritis derives its name from a "reaction to an infection."
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
It used to be certain specific infections caused it. More and more I'm reading that almost any infection can cause it. I had a genetic predisposition to have this type of arthritis. When I read how many people develop PMR after a Covid infection, I wonder if they actually have reactive arthritis instead of PMR.
My reactive arthritis had recurring flares that never went away. High dose Prednisone followed by a fast taper resulted in remission each time. I did this successfully more than 30 times. Unlike PMR, when I could never taper off Prednisone until a biologic called Actemra (tocilizumab) was tried.
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I'm very sorry your daughter has been going through all this. My father suffered from rheumatoid arthritis years before drugs like methotrexate were available and I know first hand the toll this disease takes. I'm hopeful for all of you that she's now getting the help she needs. Here's a link to an article about methotrexate that may interest you https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7047041/.