I think I'll have my salivary/tear glands removed so all of my Sjogrens probs will go away & I can return to work and complete all the daily life tasks life requires.

Is it happenstance that GLP1 agonists are associated w increased NeuroSjogrens GI symptoms like gastroparesis, nausea, vomitting & heartburn? & Non GI symptoms like hypotension, arthralgias & headaches? www.nature.com/articles/s41...

If this report is validated then Avian flu might be spreading in China. This report suggests quarantine facilities are being built & live poultry has been banned from a couple large cities. www.ntd.com/bird-flu-out...

Bird Flu Outbreak Affecting Humans in China Likely Massively Underreported: Microbiologist

While more reports of bird flu are coming out across the globe, experts say China has been hard hit as well—and likely substantially harder than the Chinese Communist Party is willing to report. To fi...

ntd.com

Medicine is as much a Culture as it is an acolyte of Science. Humans are attatched to their inculturations. This attatchment creates Dogma (no longer living & breathing the new findings at the edges of Science.) Cultures are slow to change. This causes delays in Progress in the Fields of Medicine

A prominent acute dysautonomia flare can go untreated out of 1) a belief there is no altering the damage causing the symptoms & 2) No specialty assumes treating responsibility. Cards thinks its Rheum or Neuro. Rheum thinks it Neuro/Cards. Neuro thinks its Rheum/Cards...

👏👏👏 @dysclinic et al's article clarifying dysautonomia is not FND. "As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians." ⬇️

Gorgeous pics!

Ed Yong is offline@edyong209.bsky.social · 2y ago

Whew! Popping back here briefly to discuss a very eventful few days. On Sat, a SNOW BUNTING appears at Hayward Regional. 😱 The bird is stunning & super-rare in the East Bay. Many birders go to see it. It's living its best life on a white/brown plastic culvert that it maybe thinks is snow? 1/

Sjogrens can be heavy. Distraction can help. If you like things Leonardo da Vinci & things Ken Burns (documentary historian) PBS (in US) will be showing Ken Burns (& dau's) tv documentary of Leonardo da Vinci. Curious to know their interpretation of The Mona Lisa's smile?

Research classification criteria/CC's are designed to find a "represenative group" of patients to study out of All the patients w that disease & apply those findings to All w the disease. Diagnostic Criteria try to diagnose All w disease. This is why CC's fail as DC's.

Clinicians in The Know about Sjogrens confront the same reality patients do when they try to get other clinicians to see The Reality of Sjogrens. Its exhausting. "The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum

Paper: "Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease" Pulmonary Ultrasound for Sjogrens. Scrrenshots of abstract to follow in a 🧵 pubmed.ncbi.nlm.nih.gov/39551149/

Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease - PubMed

PI may represent a valid tool for the assessment of lung involvement in SjD, particularly for the screening of ILD. PI limited to postero-inferior lung fields seem to maintain good diagnostic accuracy...

pubmed.ncbi.nlm.nih.gov

🚨👀 This NEEDS to be said: Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵 1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens. 2. Dryness is found in lots of disorders/conditions and

For NeuroSjogrens to get studied we need actual real diagnostic criteria rather than usung research classification criteria misused as diagnostic criteria. We need to use scales in research that adequately measure Neuro in Sjogrens. We don't even have one of these yet. @OMERACT

The diagnosis of Sjogrens can be made without sicca/dryness. It can be made without SSA. It can be made without a positive lip biopsy. If we are already cobbling together things that ARE NOT required in Sj to "diagnose" Sj, why not add in systemic disabling things like Neuro?

🚨‼️👀 Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease. www.prnewswire.com/news-release...

Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease

The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...

prnewswire.com

FDA has given FDA Therapy designation to Nipocalimab 4 treatment of adults w/ mod-to-severe Sjögren’s. NIPO is an Ab to neonatal Fc receptor (FcRn), & was tested & shown effective in Sj Phase 2 DAHLIAS study - a plenary presentation at #ACR24. (@RheumNow post) buff.ly/4fwfnuy buff.ly/4fwfpTc

Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease

The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...

buff.ly

Paper: "Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model" Has anyone trialed low dose IL2 for their Sjogrens? Abstract to follow. pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….

Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model - PubMed

Sjögren's syndrome (SS) is a systemic autoimmune disease with no efficient treatment, and it is associated with dysregulated immune cells and impaired interleukin (IL)-2 signaling. IL-2 is critical fo...

pubmed.ncbi.nlm.nih.gov

I hope your preliminary treatment goes well! Just be aware of something I didn't know before now: Seronegative Sjogrens makes your chances of neuropathy go UP. If you're negative on the blood test and the docs try to rule it out, make sure they know/remember that. It would have saved me Years.

Is it sunburn? Is it Sjogrens flaring? Is it a spotty plague spread by inconsiderate fuckers? Who knows?

Dying Hungry And Thirsty GIF

ALT: Dying Hungry And Thirsty GIF

media.tenor.com

you know, colchicine is a terrible drug but wow does it come in clutch when my sjogrens causes ~problems

Anyone know rules for your acct handle? I have an alert sign saying my handle is invalid. 🤷‍♀️

If only we can liberate research articles & make them all free... Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)

Liz@ilisabat.bsky.social · 2y ago

I know everyone says this, but the amount of STUFF libraries have available digitally is just breathtaking. My library system here in Baton Rouge has thousands of Udemy courses available. And they're free! They're so free. Libraries are cool. Librarians are cool. Support your libraries.

When "checkpoint inhibitor" drugs are used to rev up the immune system to treat cancer they can cause a "Sjogrens like syndrome" including myopathy (motor weakness/heart/respiratory weakness) & myasthenic like symptoms. Per this abstract 40% get acetylcholine/autonomic Autoantibodies! (Cont)

Just a quick note to those new here, if you think someone's post is worth other people reading, repost it. Liking it does not have the same effect here as on the dead-bird site. There is no algorithm. That's one of the reasons we like it.

👏👏👏 Sjogrens Disease Peripheral Neuro Clinical Practice Guidelines are a poster board presentation @ACR2024!

Cristina Montoya RD@arthritisdietitian.bsky.social · 2y ago

The abstract doesn't share a lot of details: #ACR24 Evidence-Based Guidelines for Sjögren’s Disease Peripheral Nervous System Manifestations acrabstracts.org/abstract/evi...

A NEW MITOCHONDRIA! Rather than make energy/ATP et al, the new type appears (so far) to create basic components for fats & proteins (per short fun video below.) Sjogrens, ME, LC have been shown to have abnormal function in mitochondria. I wonder what else we'll learn now? x.com/Nature/statu...

These #neurosjogrens papers are paradigm shifting papers imo. (see links @ end of thread) Will b eye opening 4 Neuros 2 read. Note all study subjects must meet current Sj criteria wc obviously ⬆️ %ages who will have sicca+, SSA+ & Bx+. 🧵

#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable. ...