#BeyondDryness

A rheumatologist-led educational hub dedicated to #Sjogrens Disease (aka Sjogrens Syndrome). We go #BeyondDryness.

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @SarahSchaferMD @SjogrensForum

[#BeyondDryness @BeyondDryness]

Why do NMO and Sjogrens frequently occur together? New work from UCSF points to T cell mimicry between AQP4 and AQP5. We demonstrate that single T cells can target both water channels suggesting a shared mechanism across tissues, including the brain.
https://t.co/BDnP1F2bHE

[#BeyondDryness @BeyondDryness]

@arianek It’s a sialylated IgG1 Fc. Basically they modified the IgG molecules with a special sugar type molecule to enhance its immunomodulatory effects.

[Julie Sullivan @CureLongCovid]

Autonomic Function Testing (AFT): What to Expect AFT is a battery of tests used to diagnose dysfunction of the autonomic nervous system, identify specific conditions- like POTS, orthostatic hypotension & small fiber neuropathy. AFT helps identify the cause of symptoms and guides treatment. 1/

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @arianek This probably spur more interest in an EBV vaccine given a possible implication for downstream autoimmunity. It’s hard to avoid EBV since we’re all exposed to it. The key is why some get a break in ‘self-tolerance’ after EBV.

[Eric Topol @EricTopol]

Now the potential role of Epstein Barr virus for driving lupus
https://t.co/hAdsnxh4OX

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens That’s why there are composite scores like CRESS and STAR that some groups use to better capture responses as some may not have ESSDAI improvement but have improvements in other things. ESSDAI doesn’t fully capture disease as you mention.

[#BeyondDryness @BeyondDryness]

@SarahSchaferMD @elisa_comer @NeuroSjogrens @KristinaRevay @Dysautonomia Thank you for sharing. Patient heterogeneity is a big issue for physicians and patients to be aware of

[#BeyondDryness @BeyondDryness]

@KPKellyNC @NeuroSjogrens @SarahSchaferMD @lupuscyclopedia Complement can fluctuate for many reasons. Sometimes it goes up after infection and can go down when it’s being used. If complement is always low, it could suggest deficiency. Have to interpret in the context of symptoms and knowing your values historically.

[#BeyondDryness @BeyondDryness]

@sandyasm @Bvolz3 @NeuroSjogrens @SarahSchaferMD Note that in #Sjogrens there can also be compensatory hyperhidrosis. The loss of sweating leads to excessive sweating elsewhere.

[#BeyondDryness @BeyondDryness]

@sandyasm @NeuroSjogrens @SarahSchaferMD Many potential mechanisms but I would say that heat intolerance is frequent manifestation of autonomic neuropathy, due to sweat gland denervation.

This is testable and can be detected by procedures such as QSART or thermoregulatory sweat test.

[#BeyondDryness @BeyondDryness]

@elisa_comer @NeuroSjogrens @SjogrensOrg @SarahSchaferMD @acr @eular_org I think patient-researcher partnership is key:
1. When appropriate, join our studies.
2. Spread the word about important research efforts to increase awareness.
3. Engage with social media to enrich/provide feedback on important work.
Every bit of support makes a big difference.

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @SjogrensOrg @SarahSchaferMD @acr @eular_org I agree that closing the gap is important. This was a priority of mine when I started at MGH. We now work closely with our neuro immunology and autonomic neurology group for both clinical and research aims as well as regular conferences between our departments.

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @SjogrensOrg @SarahSchaferMD @acr @eular_org This is a particular focus for our group. We serially look at criteria and non-criteria parameters over time to better characterize natural history of Sjogrens, and look for novel biomarkers.

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens I give some some credit because it mentions GYN symptoms, skin dryness and joint pains. But yes, would be better also mention things like ILD, neuro, lymphoma, etc. It’s tough because it’s an evolving field and little is still known on pathogenesis

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @lupuscyclopedia T cells can drive B cell pathology, not mutually exclusive

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens T cells definitely play a role and there are certainly patients that appear to have more of a T cell-mediated (and not B cell-mediated) pathology

[#BeyondDryness @BeyondDryness]

@NeuroSjogrens @SarahSchaferMD @SjogrensForum @elisa_comer

[#BeyondDryness @BeyondDryness]

🌟 Discover a Rare Autoimmune Case of my Patient 🌟
📖 Highlight: An unusual case of Antisynthetase Syndrome mimicking angioedema, evolving into skin conditions, dramatically improved with an innovative treatment approach.

[JAMA Dermatology @JAMADerm]

This case report describes the clinical course of a 32-year-old woman with anti-synthetase syndrome presenting with angioedema-like panniculitis and subsequently cutaneous ulcers, synovitis, and fevers, found to have a clonal TCR-beta gene rearrangement. https://t.co/jVmTqRvZ80

[#BeyondDryness @BeyondDryness]

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