Autoinflammatory vs autoimmune?
PMR more "autoinflammatory" than "classic autoimmune" disease?
I read that : "Polymyalgia rheumatica (PMR) is widely classified as an inflammatory, immune-mediated rheumatic disease, sitting in a gray area between a classic autoimmune condition and an autoinflammatory disorder."
Therefore it is triggered primarily by response of "innate" immune system rather than "adaptive immune system ".
And "...PMR is an “Immune-mediated; involves IL-6 elevation, B-cell alteration, and Th17-cell increase.”, as noted by StatPearls. The body's immune apparatus drives profound system-wide inflammation, particularly targeting the joints, bursae, and connective tissues around the shoulders and hips. [1] "
Classic autoantibodies missing: Unlike typical autoimmune diseases (such as rheumatoid arthritis), patients with PMR usually test negative for rheumatoid factor and specific pathogenic autoantibodies. [1]
What are the implication of this for treatment? for avoidance of flares? Any thoughts>?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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@dadcue
I definitely won't be asking AI anything about tapering!! I know what you mean. I use Brave Search, not a particular AI app, but even that compiles info from multiple sources I think. I use it for more general type questions for the most part. Forums are great, as we share with eachother here, but for actual facts re critical health issues etc, as you say, we need to not trust AI as the resource! I think it's only going to get worse as time goes on.
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1 Reaction@dadcue
You can question the AI apps. I tend to use Claude more often than not and I will ask if it's sure and question specifics. Sometimes it will reverse field but I find it to be a useful tool. I also will debate it if I disagree, or just for entertainment. I had a full debate one time on who legally owns The Amber Room.
@boomermeg
There are many resources out there and it's difficult to weed through the information unless it gives a source. You can question the AI results and ask for verification. At least with Claude you can.
I had a PET scan when I was diagnosed with SMM. It didn't show anything significant in the report. Both my hematologist-oncologist and rheumatologist also reviewed the scan and read the report, but I'm told that there's such a thing as a PET MRI which is more detailed than a regular scan. For instance, in SMM it can detect the beginning of bone lesions whereas the scan can only detect them later. Maybe an MRI will eventually be the best diagnostic tool as opposed to scans or ultrasound. Of course insurance usually dictates the first course of action.
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2 Reactions@kjoed53
I like AI the best when it agrees with me. I mostly stick with what my personal experience has been for whatever it is worth. I run my personal experience by AI to see what it thinks. Mostly when AI disagrees it is because of a grammatical mistake of some sort. It gives me insight into how something is written can be misinterpreted. I also like how AI verifies that I'm not the only one who has experienced something that I can't explain. AI explains it better than I can.
I question things that sound more like something you would hear in an echo chamber. It is hard to disagree with an echo chamber when it doesn't jive with my personal experience. AI helps me to look at things from another perspective.
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3 Reactions@dadcue
I started out using it to interpret my blood work so I wasn't blindsided at my appointments. It helps me keep moving with the discussion instead of fixating on something that I heard for the first time. I also use it as a springboard for comments I'm reading and comments I'm writing. But I do really enjoy debating it, especially if I win.
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1 Reaction@kjoed53 takes a dang good Rheumatologist in that energy scenario to keep the momentum going towards recovery /treatment because my temporal biopsy (conducted out of state too) was negative, and sonography is (preferred) being allowed to monitor for my a step-down of Actemrya. Perhaps because the University of North Carolina considers this a better alternative? The Director of Rheumatology and Immunology directly oversees my treatment. It was that way at the University of Colorado too, perhaps because the attending was a Fellow? I don’t know these hierarchical systems in the medical world, but I’m thankful for sonography versus getting cut. Also too because my hair was long, whoever shaved the side of my head then marked it up with purple. That haircut was tough to recover LOL
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1 Reaction@clendenin
Haha...As long as they shaved the correct side first and didn't have to shave both sides. I don't have that worry. What little I have is maintained at 3/8 inch, making hats mandatory when outside in the summer sun or the winter cold.
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1 Reaction@kjoed53 haha, mine too! The sonograms do better with short hair. It’s was two hours head rubbing event too!
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2 ReactionsFor what it’s worth, I can tell the difference between the gray zone of autoimmune versus PMR disorder, the later accompanied by GCA, with more acute pain levels in the hip girdle. It was debilitating, requiring hospitalization. The gray zone /autoimmune: feels like to me an all over malady, with heavier pain feels also between the shoulders blades which is felt with vaccination
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1 Reaction@kjoed53 I have told my AI tool to not guess or infer answers without telling me. A few months ago it inferred an answer which caused me to spend $250 on a posable dash cam that was not posable in the manner I requested pose-ability.
I told my AI tool in the future to simply tell it was assuming or inferring and let me act on it's findings based on the "true" facts. I use MS Copilot. Copilot agreed to those rules and has been good at it since.