Autoinflammatory vs autoimmune?

Posted by judithgrossman @judithgrossman, Sep 7 1:03pm

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.

Profile picture for Mike @dadcue

@boomermeg

I get worried about some of the artificial intelligence information that is generated. The source of the information is sometimes attributed to online patient forums. There is one PMR forum where the same information is repeated over and over again about the "best way" to taper off prednsone. There is no medical research that explicitly states that one method of tapering off Prednisone is superior to any other method. However, artificial intelligence cites a patient forum as the source of the information as if it is a fact.
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At least the AI search I did on the above paragraph admits to a flaw.

" If an online patient forum repeats a specific, highly detailed Polymyalgia Rheumatica (PMR) tapering schedule thousands of times, the AI learns that this pattern is highly relevant to the topic. Without strict guardrails, the AI can mistakenly echo that community consensus as if it were a proven medical fact."

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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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Profile picture for Mike @dadcue

@boomermeg

I get worried about some of the artificial intelligence information that is generated. The source of the information is sometimes attributed to online patient forums. There is one PMR forum where the same information is repeated over and over again about the "best way" to taper off prednsone. There is no medical research that explicitly states that one method of tapering off Prednisone is superior to any other method. However, artificial intelligence cites a patient forum as the source of the information as if it is a fact.
----------------------
At least the AI search I did on the above paragraph admits to a flaw.

" If an online patient forum repeats a specific, highly detailed Polymyalgia Rheumatica (PMR) tapering schedule thousands of times, the AI learns that this pattern is highly relevant to the topic. Without strict guardrails, the AI can mistakenly echo that community consensus as if it were a proven medical fact."

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@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.

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Profile picture for boomermeg @boomermeg

@kjoed53
Thanks for all of that information from Claude. It's helpful to get information from different sources.
I was fortunate to have my Ultrasound done by an older MD with FACR and RhMSUS training and many years of experience.
You are correct that it depends a lot on the technician operating the Ultrasound and their education, experience, etc.
I've noticed that much of the information returned from queries will differ at least to some degree depending upon which search engine or App I'm using. Even the same search engine, when querried on laptop compared to smartphone has been slightly different. At any rate, I've found information that states that Ultrasound is used as first line practical tool due to it's price, and availability, and has 93-99% accuracy/specificity to detect bilateral subacromial-subdeltoid bursitis and PMR related activity.
I'm not sure if you saw another comment I made that PET is being used to diagnose more complex cases where whole body scan is needed to investigate for PMR and can detect GCA. It's not commonly used due to radiation, cost etc., but is also available. It's 18F-FDG-PET/CT specifically.
So, there are different scanning tools being used with different degrees of accuracy/specificity, and Ultrasound is 93-99% accurate to diagnose PMR in shoulders specifically. GCA can be detected also by Ultrasound. For whatever it's worth to anyone who'd like to look into Ultrasound as a pretty accurate tool. I hope all of the information we find and share is helpful to someone. Blessings.

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@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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Profile picture for kjoed53 @kjoed53

@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.

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@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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Profile picture for Mike @dadcue

@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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@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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Profile picture for kjoed53 @kjoed53

@boomermeg
According to the Claude app...
Mostly true, with one important caveat: it's accurate for GCA, but "definitive" overstates things for both.
For GCA: Ultrasound is now integral to the 2022 ACR/EULAR classification criteria for GCA, and temporal and axillary artery ultrasound is recommended as the first-line imaging technique to check for mural inflammatory changes in patients with suspected GCA. Evidence has shown color duplex ultrasound (CDUS) is more sensitive, less invasive, faster, and less expensive than temporal artery biopsy, which used to be the gold standard. So yes — ultrasound of the temporal arteries (and other cranial/large vessels) is now a well-established, guideline-endorsed way to confirm GCA, often replacing biopsy. (Diagnosing vasculitis with ultrasound: findings and pitfalls - Wolfgang A. Schmidt, Valentin S. Schäfer, 2024 +2)
But "definitive" isn't quite right. Diagnosis is typically made by combining a clinical pretest probability assessment with the ultrasound result — it's not a standalone yes/no test. It's also operator-dependent: the main limitation is that reliability depends on the technical expertise of the ultrasonographer. So it's the preferred first-line confirmatory test, not an infallible one. (Rheumatology Advisor) (nih)
For PMR: this is where the claim is weaker. Diagnosis of PMR rests on clinical signs and symptoms — there's no equivalent classification criteria that treats ultrasound as confirmatory the way GCA's does. Ultrasound can show findings like subacromial bursitis, biceps tenosynovitis, or glenohumeral synovitis that support a PMR diagnosis and help distinguish it from other conditions (like RA), but it's a supportive tool, not a definitive test — PMR remains largely a clinical diagnosis of exclusion, often made retrospectively based on response to steroids. (Rheumnow)
So: solid confirmatory role for GCA, useful supporting role (not definitive) for PMR.

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@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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Profile picture for clendenin @clendenin

@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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@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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Profile picture for kjoed53 @kjoed53

@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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@kjoed53 haha, mine too! The sonograms do better with short hair. It’s was two hours head rubbing event too!

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For 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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Profile picture for kjoed53 @kjoed53

@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.

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@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.

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