Thread by @NeuroSjogrens

@blakewarner0 @SarahSchaferMD @buckleydebbie Sorry I wasn't clear. - msgb doesn't remove a diagnosis. It closes MD's minds to the possibility of a diagnosis. SSA, mgsb, Schirmers, OSS, measured saliva, salivary ultrasound are ALL nonspecific & not sensitive. This is a bad way to create criteria for a disease. 🧵1/n

@blakewarner0 @SarahSchaferMD @buckleydebbie 2. For most systemic medical diseases diagnosis is made by a constellation of signs & symptoms from all the systems commonly involved, not focusing on one bit (like salivary/lacrimal glands) to the exclusion of all others organs that are classic damage patterns for a disease...

@blakewarner0 @SarahSchaferMD @buckleydebbie 3. Look at lupus criteria. Imagine if one had renal, cardiac & brain damage from lupus but lupus criteria only counted a facial rash, an antibody & a skin bx consistent with lupus. Nothing else counted for lupus. The patient w brain; heart & kidney damage won't b diagnosed...

@blakewarner0 @SarahSchaferMD @buckleydebbie 4. That patient would be unable to get a lupus diagnosis at all! They would be unable to get treatment bc without a diagnosis insurance won't cover treatments (especially the costly one.) Is it right to deny this patient care? ...

@blakewarner0 @SarahSchaferMD @buckleydebbie 5. Is it right to force that patient to wait months, years, decades or until death for them to develop a facial rash in order to get systemic monitoring & treatment?
*This is precisely what current criteria foist upon #Sjogrens patients who have an unmonitored & untreated disease

@blakewarner0 @SarahSchaferMD @buckleydebbie 6. until they are "fortunate enough to have their disease attack these tiny little glands in the head. Never mind if you've had vasculitis in the brain, or CIDP (1 in 2.8 with CIDP have #Sjogrens) or interstitial lung disease or lymphoma.

@blakewarner0 @SarahSchaferMD @buckleydebbie 7. It's not #Sjogrens unless & until those tiny glands get hit, regardless how many organ systems are involved & how severely they are damaged by your nameless autoimmune disease. Why this strange fascination with tiny glands when so much damage throughout the body is happening?

@blakewarner0 @SarahSchaferMD @buckleydebbie 8. Try getting hydroxychloroquine or LDN or immunosuppressants or biologics without a diagnosis. Try getting systemic surveillance to catch organ damage early so can treat to increase duration & QOL. This could so easily change if this bizarre obsession w spit & tears stopped.

@blakewarner0 @SarahSchaferMD @buckleydebbie 9. Look at lupus criteria

@blakewarner0 @SarahSchaferMD @buckleydebbie 10. Compare to Sjogrens criteria (& recall #Sjogrens is ALWAYS systemic.) Notice the radical difference between these sets of criteria. Sj's have cytopenias. They'd count in lupus but not in Sj criteria. Neuro occurs in Sj's but doesn't count. Counts in lupus criteria...

@blakewarner0 @SarahSchaferMD @buckleydebbie 11. Musculosk probs don't count in Sj but do in SLE. Renal counts in SLE but not in #Sjogrens. Antiphospholipid antibodies count in lupus but not in Sjogrens. I'm pretty sure the point is made. NO MD DELAYS TREATMENT for lupus until the disease hits a certain named organ.

@blakewarner0 @SarahSchaferMD @buckleydebbie 12. But #Sjogrens isn't diagnosed or treated until it hits these tiny spit & tears glands. Diagnosis of a systemic AI disease ought take into account systemic aspects of the disease. It's a big picture process & a microscopic view of a salivary gland just isn't up to the job.

@blakewarner0 @SarahSchaferMD @buckleydebbie 13. Even Neurology has come to recognize how short sighted fixating on glands in the head is re a systemic disease & created a new scale to address the problem. See
link.springer.com/article/10.100…

@blakewarner0 @SarahSchaferMD @buckleydebbie 14. Current #Sjogrens classification criteria r wholly inadequate 2 represent the common spectrum of disease in Sj. The research is fixated on just a small piece of the pie chart of Sj patients. The measurements of treatment effects in research fail to assess systemic aspects.

@blakewarner0 @SarahSchaferMD @buckleydebbie 15. IMO it's best to acknowledge failure early & move on to something better. Current #Sjogrens classification criteria are an abject failure for too many Sjogrens patients. Classification criteria ought NEVER be used as diagnostic criteria for obvious reasons.

@blakewarner0 @SarahSchaferMD @buckleydebbie 16. It's high time #Sjogrens Diagnostic criteria be created. & for research in Sjogrens to track organ damage. And it's past time for Clinical Practice Guidelines for routine organ surveillance parameters to be published.

@blakewarner0 @SarahSchaferMD @buckleydebbie 17. It's past time 4 #Sjogrens criteria 2b broadened & 2 stop fixating on salivary & lacrimal glands ALONE. No need 2 remove glands from new criteria. Just give them 1 point of many for Heme, neuro, cardiac, GI, renal, pulm points etc.

Why not look at Sj as it really is?
Fin

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