"Evolution" of Seronegative RA into PMR

@dadcue, I'm not sure if you have used Google Scholar but it's great at finding medical research articles and it has an option to sort results by year so you can find the latest research studies. Here are the results searching for "seronegative rheumatoid arthritis +PMR" and selecting the "Since 2024" option - https://scholar.google.com/scholar?as_ylo=2024&q=seronegative+rheumatoid+arthritis+%2BPMR&hl=en&as_sdt=0,24

And I think my initial symptoms were more of a PMR scenario - hips, shoulders, knees and ankles - and hands. The hips and shoulders and ankles have taken a back seat for years. So I’m solidly RA but I do recall that initial onset and how terrible it was. And I feel for anyone who has had to endure PMR year after year.

People making diagnoses feel the need to shove us into one neat box. When we don't fit that one, they try another diagnosis, and when they can't shove us into one or other or symptoms change, they say we have something else or a combination of things.

In reality, a lot of ailments have different severities and multiple causes depending on our individual diets, metabolisms, medical histories and exposure to various environmental factors. They often don't fit into neat boxes or diagnoses.

There's a lot unknown about individual causes for most arthritic and inflammatory conditions and individuals respond differently to various treatments, as we see on this forum regularly.

I understand what you are saying but there aren't easy answers for most things.

I never felt my rheumatologist ever shoved me into "one neat box." My GP saw the "bigger picture" while he compiled information from multiple specialists.

I would agree the "specialists" are only focused on their specialty. If our symptoms don't fit their specialty, they don't look at anything beyond their realm.

I had a long list of things that happened to me. I was diagnosed by many specialists. However, I was the one that crammed everything into one box and took prednisone for any and all pain. This was especially true after PMR was diagnosed, I didn't think that I needed all the specialists and took prednisone for everything. That was a big mistake on my part.

It is the self proclaimed "experts" who think they know everything that I have a tendency to ignore.

Good morning all : thanks @dadcue for that link . Along the lines of "diagnostic shifts " I found this manuscript in Dec 2023
Internal and Emergency Medicine (2023) 18:1929–1939
Clinical, laboratory and ultrasonographic findings at baseline predict long‐term outcome of polymyalgia rheumatica: a multicentric retrospective study
Edoardo Conticini. First author - Siena ITALY

some of my notes , thoughts :
-US= ultrasound not United States !
- Dx and GC treatment and duration of GC
-First mention I’ve seen in many manuscripts discussing “adrenal failure” - i asked my Rheumatologist about this now that i am down to 5.5 mg prednisone/day.
-Fig 1 - Diagnostic shift during 1 , 2 3 4 yrs of follow-up to — ( second time I ever heard of CPPD- someone in our forum mentioned it )

European groups have more research into using ultrasound to diagnose PMR more definitively ?

From the article :
“In conclusion, our study strengthens the concept that PMR is a clinically heterogeneous disorder and should be potentially considered as a syndrome.
Despite the protean presentation and outcome, certain clinical, serological and imaging findings could precociously suggest a response to treatment, diagnostic shift and GCs dosage. In this regard, US[ultrasound] has a potential value for being considered the missing tool for a more precise diagnosis of PMR. “

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?

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/.

We really appreciate your responding. The article gives us the data showing the side effects really contribute to quitting using it. I hope our new rheumatologist has a bunch of other meds to control the side effects. More pills for the pills…as a 79 year old mom, I hope I live long enough to see her turn a corner. Much appreciation to you…

My very best to all of you in your journey. I hope you find answers and solutions soon.

@ferret911
I was on methotrexate for years. Just make sure someone is doing quarterly blood draws to check liver enzymes - ALT /AST- and prescribe folic acid to help mitigate those MTX side effects.

So this isnt reactive arthritis? Im ccing @dadcue who has a history of both reactive arthritis and PMR. I have RA that began as sero negative.
Both he and I - him much more than I - have first hand knowledge about weaning off steroids. And that has to be the goal, because they destroy bones and are addictive.
It sounds as if she is in capable hands now and i promise there is an end state that is more good than bad. It just will take some maneuvering to get there. Happy to answer any questions about life with RA.