Neuro Sjogrens
neurosjogrens.bsky.social
Neuro Sjogrens
@neurosjogrens.bsky.social
Advocate for NeuroSjogrens & assorted other chronic illnesses. Posts articles & re-posts items this acct is interested in. Advocacy rather than advice.
Sjogrens is NOT a 'gland disease.'
February 8, 2025 at 4:58 AM
Its not available for clinical use yet. Its congener Vyvgart has a similar mevchanism & is available. Sjogrens has never had ANY drug approved specifically for it. Just this fact makes it a first. Calls attn to Sj. This class of drugs is hoped to work for many autoantibody related diseases.
November 29, 2024 at 1:54 AM
Good to see you here likymol.bsky.social.
November 23, 2024 at 6:00 AM
I've met an array of people with different autoimmune diseases at the infusion center who do take both Rituxan & IVIG (regularly) if they have an MD who will provide both.
November 22, 2024 at 11:59 PM
Vivgart is a similar class of drug that is already on the market & already being prescribed for "antibody driven" disease.
November 22, 2024 at 4:50 PM
Sometimes dysautonomia is supported by autoimmune causes & responds to immunosuppression or immunoglobulin therapies.
November 22, 2024 at 1:04 AM
Ppl w Sjogrens commonly get POTS & other forms of dysautonomia (organ & tissue neuropathies as opposed to neuropathies of skeletal muscle/motor or skin/ sentation)

www.frontiersin.org/journals/neu...
Frontiers | Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders
In the past four years of COVID-19 and Long COVID, a renewed interest in POTS and other autonomic disorders brought to light a common misconception that thes...
www.frontiersin.org
November 20, 2024 at 3:21 PM
if it could be seronegative Sjogrens and get told NO as ANA and ENA is neg. I stop asking after a while."
-Dr. Rebecca Ryan
November 19, 2024 at 5:31 PM
November 19, 2024 at 4:54 PM
November 19, 2024 at 4:54 PM
Time for another Sect that recognizes Systemic Damage as part of the Criteria to Diagnose Sjogrens
November 19, 2024 at 4:34 PM
in Sjogrens. Damage to any Organs outside the Lubricating Glands is considered Heresy to include into The Sjogrens "Religion" of The Glands.

Clinicians get trapped in the doctrine & rites of The Classification Criteria of The Glands.
November 19, 2024 at 4:34 PM
So why r ultrasounds being given supremacy over other tests that just as readily show damage Sj does, but in major organs?

Imv, Salivary gland Ultrasound is being unnaturally "Boosted" in clinical ratings out of this strange worship of damage to Lubricating Glands
November 19, 2024 at 4:34 PM
"How do we know the immune system is causing the damage those tests if we can't see immune cells there?" If this is the rationale, then WHY is salivary Ultrasound supplanting lip biopsy? Ultrasound can't show an immune mechanism at play either. It only shows damage that could also Not Be Sjogrens.
November 19, 2024 at 4:34 PM