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Posts by Deb

Does anybody know if this will be streamed or available to watch afterwards?

1 year ago 9 3 2 0
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🔍 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...

1 year ago 26 13 1 1

Is there any info on oral ketotifen and paxlovid interactions please?

1 year ago 0 0 1 0
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A Plea to Maskless Healthcare Workers from Vulnerable Patients If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.

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:

1 year ago 1512 518 35 23
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Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 - PubMed This retrospective cohort study with an extended follow-up period found associations between COVID-19 and the long-term risk of various autoimmune and autoinflammatory connective tissue disorders. Lon...

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/

1 year ago 5 3 1 0
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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

1 year ago 27 5 0 2

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

1 year ago 3 1 1 0
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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.

1 year ago 2 1 1 0
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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

1 year ago 10 3 0 0
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Language Matters! The International Sjögren’s Community Changes Sjögren’s Syndrome to Sjögren’s Disease! The international Sjögren’s community has officially changed the disease name Sjögren’s Syndrome to Sjögren’s Disease! Sjögren’s disease is now the official name of the disease and the term “secondary...

#Sjogrens officially changed from Sjogren's Syndrome to Sjogren disease sjogrens.org/blog/2024/la...

1 year ago 1 1 0 0

What percentage of “rhupus” is just misdiagnosed Sjögren?

1 year ago 3 1 1 0

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.

1 year ago 3 1 0 0

15/ Find self-advocacy tools and learn more on my extensively researched and cited website:
www.sjogrensadvocate.com

1 year ago 17 4 3 0
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‘My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations Despite being one of the most prevalent autoimmune diseases in the United States, Sjögren’s disease remains shrouded behind significant misconceptions and knowledge gaps that can delay diag...

14/ For more about what must be done to raise clinican awareness and improve Sjogren's care:
www.healio.com/news/rheumat...

1 year ago 22 4 1 0
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Clinical Practice Guidelines In 2009, the Sjögren's Foundation launched an initiative to develop clinical practice guidelines for Sjögren's, which aim to: Improve the quality of care for Sjögren's patients by developing guideline...

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-...

1 year ago 9 2 1 0
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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/

1 year ago 7 1 1 0

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/

1 year ago 6 1 1 0

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/

1 year ago 9 2 1 0

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/

1 year ago 9 2 1 0

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/

1 year ago 8 2 1 0

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/

1 year ago 10 3 2 0

6/
sjogrens.org/sites/defaul...

1 year ago 4 2 1 0

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/

1 year ago 10 2 1 0
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Systemic involvement in primary Sjogren's syndrome evaluated by the EULAR-SS disease activity index: analysis of 921 Spanish patients (GEAS-SS Registry) - PubMed Primary SS is undeniably a systemic disease, with the joints, lungs, skin and peripheral nerves being the most frequently involved organs. Cytopenias, hypocomplementaemia and cryoglobulinaemia at diag...

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)

1 year ago 10 3 1 0

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/

1 year ago 9 2 1 0

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/

1 year ago 8 2 1 0

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/

1 year ago 60 15 8 1
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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/...

1 year ago 13 3 0 1

Nice to see that a JAKinib like baricitinib is effective in this model. JAKinibs effects in Sjögren disease should certainly be explored further.

1 year ago 1 1 0 0