Does anybody know if this will be streamed or available to watch afterwards?
Posts by Deb
🔍 New study from Center examines role of autoantibodies in #MECFS. 🧪 Using advanced screening of 7,500+ antibody-antigen interactions in 172 participants, researchers found no significant differences between patients & controls. 📄 Read more: doi.org/10.3390/ijms...
Is there any info on oral ketotifen and paxlovid interactions please?
It’s 2025… can we start masking in hospitals this year?
Can we stop insinuating that hospital acquired covid is “inevitable” or that those who die were going to “die anyways”?
Can we call it what it is? An epic failure of infection control to protect those who put their lives in your hands:
My 1st #COVID-19 infection was in 2020: 2,5 months+ 2 months for recovering.
My 2nd in 2022: 12 days + 18 days with fever.
My #Sjögren in 2023.
I have always thought that my short "long-covid" was because I already have the predisposition to autoimmune disorder 🤷
pubmed.ncbi.nlm.nih.gov/39504045/
Is an approved treatment (or 2) on the horizon for #Sjogren disease?
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
Since may2023 I'm on sick leave thanks to #Sjögren. 4 flares (3-4months each) + #IVIG treatment don't allow me to work. I asked for #disability recognition 7ma, still waiting.
Last week I realised I will pay the consequences of my #chronicillness at work more than I thought
Alopecia areata, Behçet disease, Crohn disease, ulcerative colitis, rheumatoid arthritis , systemic lupus erythematosus, Sjögren syndrome, ankylosing spondylitis, and bullous pemphigoid were associated with higher risk in the COVID-19 group.
Yes.I guess many with chronic illness and invisible illness can truly relate to this.
We do things with extreme pain & discomfort that would make others incapacitated
#chronicillness #chronicpain #chronicfatigue #cfs #Endometriosis #Fibromyalgia #sjogren #pain #supportingeachother #youarenotalone
#Sjogrens officially changed from Sjogren's Syndrome to Sjogren disease sjogrens.org/blog/2024/la...
What percentage of “rhupus” is just misdiagnosed Sjögren?
Any advice for managing slow digestion and constipation? I was lucky enough to be diagnosed seronegative and started salagen and plaquenil. I've been researching and it seems my diagnosis of fibromyalgia in 2013 was probably Sjögren's. Also have Hashimotos, migraines, fibroids, Interstial Cystitis.
15/ Find self-advocacy tools and learn more on my extensively researched and cited website:
www.sjogrensadvocate.com
14/ For more about what must be done to raise clinican awareness and improve Sjogren's care:
www.healio.com/news/rheumat...
It is time to put the “nuisance sicca disease paradigm” to rest. The ACR can start by posting the Sjogren’s Foundation clinical practice guidelines. 13/
sjogrens.org/researchers-...
Medical educators & the ACR must debunk long-held misconceptions.
Rheumatologists must unlearn traditional views and update their practice to provide comprehensive monitoring and management, because Sjogren’s is a serious systemic disease, never “just sicca”. 12/
It is unacceptable that a disease as prevalent as RA and with a QOL as low as SSc remains so misunderstood and neglected.
Sjogren’s is associated with early mortality from lung disease, lymphoma & comorbidities, esp. cardiovascular disease. 11/
SSA-neg patients are underdiagnosed and undertreated. We must educate clinicians that SSA-neg Sjogren’s IS a systemic disease, just as likely to get ILD and MORE likely to get joint, SFN, and dysautonomia including GI and bladder dysfunction. 10/
Every Sjogren's patient, regardless of symptoms or serostatus, should be monitored for a wide range of systemic manifestations and comorbidities.
Early detection improves outcomes. 9/
CME presenters and the ACR website perpetuate the sicca/glandular disease paradigm every time they state that Sjogren’s is often (or ever) a sicca-limited dz. This widespread mischaracterization of Sjogren’s -> inadequate care. 8/
The classification criteria overweight sicca features & do not reflect the spectrum of systemic disease. z
This obsession with sicca reinforces the “mild sicca disease” myth. The classification criteria must be updated to reflect systemic manifestations, especially neuro. 7/
6/
sjogrens.org/sites/defaul...
Sjogren’s is underdiagnosed, especially in SSA-negative and non-sicca presentations. Classification criteria are often misused as diagnostic criteria.
SSA-neg Sjogren’s is also systemic & especially prone to SFN, dysautonomia, GI & joint involvement. 5/
Landscape studies: 4/
pubmed.ncbi.nlm.nih.gov/24162151/
pubmed.ncbi.nlm.nih.gov/38560642/
ard.bmj.com/content/81/S... (Look at Table 1)
The few landscape studies done show > 80% with systemic manifestations. This is an underestimate because researchers exclude non-ESSDAI features, esp. dysautonomia, and often overlook SFN & lung disease (which is not limited to ILD). 3/
Medical education about Sjogren’s is scarce; what little is offered often perpetuates myths, such as repeating the misconception that 40% have systemic manifestations. Sjogren’s is always systemic, including in SSA-neg patients. 2/
There is a disconnect between the realities of Sjogren’s vs. how it is diagnosed and treated.
Most with Sjogren’s remain undiagnosed because clinicians don’t recognize it & often don’t know how to diagnose it or manage it. A 🧵 1/
Treg cell–specific deletion of Ca2+ influx results in a Sjögren’s disease–like phenotype in mice that is mediated by IFN-γ–producing CD4+ T cells
www.science.org/doi/10.1126/...
Nice to see that a JAKinib like baricitinib is effective in this model. JAKinibs effects in Sjögren disease should certainly be explored further.