#Sjogrens Syndrome - Year-end thoughts.
Ever since I have been a rheumatologist, I have always found diagnostic delay distressing, and perhaps nowhere is it as prevalent as in Sjogren's.
I am summarising some of my thoughts in a short-long🧵
New Study from OMRF: Salivary antibodies in so-called "sicca non-Sjogrens"
👉Saliva tests detected anti-Ro60 in 75 seronegative sicca patients
👉 Could be a new phenotype
PMID: 40320334
Could salivary antibodies also redefine the diagnosis of #Sjogrens in non-sicca phenotypes?
@SarahSchaferMD@nileshnolkha It takes incredible strength and persistence to advocate consistently in a system that too often dismisses patients who don’t fit ‘checkboxes.’Deep admiration & utmost respect @SarahSchaferMD@arianek@NeuroSjogrens and many others
@SarahSchaferMD@nileshnolkha Your story is so important—thank you for your blog. I’ve learned so much from you and the incredible Sjögren’s community here
Why do we think Sjogrens is only dryness? Is it time to contact our med schools and academies to ask them to address the incomplete (& inaccurate) education they provide so we can provide better care thru better understanding?
#MedTwitter#RheumTwitter#NeuroTwitter
You’d never know it from the outside, but someone with a chronic illness can hold a conversation, smile, even laugh…all while simultaneously fighting a battle inside their body.
Brain fog, tachycardia, fatigue, dizziness and more.
We get real good at pretending we’re okay.
@_VFK_DAA Evidence supports Sjögren-like phenotype in animal models and increased prevalence of ANA, anti-SSA and histopathologic SS-like phenotype in convalescent COVID-19 individuals.https://t.co/IjRAtAr9j1
🧠 Which neurological features should make you suspect Sjögren’s?
⚠️ Think beyond & before dryness
➡️ Sensory Neuronopathy/Ganglionopathy
➡️ Small Fiber Neuropathy
➡️ Autonomic Dysfunction
➡️ Optic Neuritis
➡️ Myelitis
➡️ Cranial neuropathy- esp trigeminal
#SjögrensAwareness
@georgedemirakos@nileshnolkha Dazodalibep phase 2 trials r promising
Reduction in both disease activity and patient reported outcomes
Phase 3 awaited
No personal experience
Studies show ⬆️mortality in Sjogren’s, SMR ranging from 1.5 -4. Respiratory infections are a top cause. I expect this will increase both directly from Covid and from the immune system damage caused by Covid.
Air cleaners, N95 masks, and vaccines are all important.
Fascinating! Gut microbiota in patients may be a possible trigger of small fiber neuropathy in the skin. Conversely, gut microbiota of healthy people might reduce small fiber neuropathy in patients. There is a lot to be learned, but one thing is clear: your #fibromyalgia, #dysautonomia, #POTS and small fiber neuropathy are not caused by your thoughts and attitudes from higher cortical functions. 😉
@SandhyaRheumat It’s also good to remember that all of these tests can be negative and you can still have Sjogren’s. This is true for me and many other people with Dysautonomia and small fiber neuropathy. I have multiple systemic manifestations, but 34 years from symptom onset to diagnosis.
🌍 Sjögren’s Awareness Month ends — but our voice stays strong 💙
Thank you for sharing, supporting & raising awareness 🌟
You’ve shown one powerful truth: you are not alone.
We keep going. Together. 💙
#SjögrenEurope#SjögrenAwareness#YouAreNotAlone#Sjögrendisease