Jill smith

@NeuroSjogrens @WoollerEmma *Divi not Divo

@NeuroSjogrens @WoollerEmma Renowned Sjogrens researcher Divo Cornec said for most of these trials ssa titers don’t change even if the disease get better, meaning ssa isn’t that correlative and might be an innocent bystander

What would happen if ppl w seronegative Neurosjogrens organized & applied in numbers 2b human subjects in Sjogrens research w goal to incr awareness for this pop that usu isn't researched? (bc of criteria.) Most will b rejected. 🤔 Cud this raise awareness of need to study us?

@RheumNow And those of us who are ssa negative? What if you are ssa negative but RF positive? Obviously there is some B cell activity going on

Usual testing for SSA (Ro) pos. in Sjogrens identifies both Ro52 + Ro60 Abs, found in 70% of SjD. Pts who are double pos (Ro52+Ro60) have more severe dz, more Bcell activity. Ro60+ have milder dz; Recent report shows SjD pts have Ro60-specific CD4 T cells, activating Bcells buff.ly/ANDqMqn

@AdinHaykin1 One has extensive plastic surgery

Anti-Zionist logic One is the peak of indigenous Palestinian beauty The other is an ugly inbred Ashkenazi abomination

@artivabio, please do a phase three trial of AlloNK for Sjogrens. We are literally begging for treatment. We have NOTHING.

@Novartis @novartis, I don’t need to talk to my physician as I am able to ready myself. You allowed up to 10% of seronegative patients in the NEPTUNUS trial. Why leave them out now? This cookie cutter message is not it

Hi Jill smith, Thank you for your message. We recommend that you consult your physician about your interest in clinical trials. For general information about Novartis clinical trials you can visit: novartisclinicaltrials.com/TrialConnectWe… or clinicaltrials.gov Kind regards, Novartis Community Manager

@novartis, why is it that you are not allowing seronegative #sjogrens patients in your THALASSA trial while you included them in the NEPTUNUS trial? Seronegative patients are more likely to have high symptomatic burden and are consistently overlooked. Why leave us out?

@Yuz6Yusof @RheumNow Does this med actually make people feel better?

#EULAR2026 OP0126 Long-term extension study up to 108 weeks: Ianalumab demonstrated sustained efficacy (change in ESSDAI) including those who switched from PBO to IAN in #Sjogren. IAN improved most domains apart from lungs, MSK & Haem - important to note @RheumNow #EULARBest

@NeuroSjogrens @Dysautonomia Seronegatives don’t have ssa

@Aclockworkolive @Dysautonomia Moreso to have industry doing research on Sjogrens to use extant scales that appropriately weight & track neurosjogrens. At present they don't use such scales. For the moment seronegatives are only studies if they have salivary/tear glands invlvmnt & an SSA.

👏👏👏 Dr. Brent Goodman, neurologist 4 Sjogrens dz extraordinaire, said yesterday in @Dysautonomia seminar that he called on every ongoing new drug research for Sj & requested ea of them use better measures of neurosj bc its CRITICAL 4 eval of rx efficacy. Great advocacy 4 us!

@Shomya1010xto @EBRheum telitacicept didn’t allow people to continue taking things like hydroxychloroquine but other trials did

@EBRheum Yikes 😬 That’s confusing… do you think it’s a trial design issue or something else causing the non-response?

Same story with nipocalumab. Worked for ESSDAI, not ESSPRI Story for telitaciecept complicated... Matt Baker "We don't usually see this kind of non response for patients in placebo groups" I'll say it a little more bluntly: I don't believe this data. #RNL26

@EBRheum What do we do? We take dazodalibep instead

Assuming ianalumab will be coming soon to a NEJM / FDA near you Successful in ESSDAI but not really in ESSPRI... 😤 No benefit at all in pts w/low salivary flow at baseline What do we do with a marginal drug that costs >$100k/yr (assuming) & no benefit in ESSPRI? #RNL26

@HenMazzig It’s Spain, what do you expect?

It’s always the same smile, the same empty hollow and soulless stare. The delight and joy they take in harming Jews, like generations before. It’s always this damn smile.

@NeuroSjogrens @SarahSchaferMD Context of hormonal dysregulation. The salivary glands are protected by hormones and when that goes awry shit happens.

@NeuroSjogrens @SarahSchaferMD Just because the disease begins in the glands doesn’t mean it’s a gland first and foremost disease. There are lots of scientific papers discussing the salivary glands and perpetrators instead of innocent bystanders of the disease. It makes a lot of sense if you look at it in the

The wide clinical variation in Sjogrens populations w its many endotypes is a direct consequence of trying to define Sjogrens by forcing all patients thru the a gland centric filter & doing research looking thru a gland centric lens. Glands are simply inadequate to the task.

@SarahSchaferMD @NeuroSjogrens It can cause dysfunction before damage. Damage doesn’t always need to happen. And how you feel is different from the level of dysfunction or damafe

@Aclockworkolive @NeuroSjogrens That is a theory, but does not explain people who have no evidence of salivary gland damage, but present with systemic manifestations.

@SarahSchaferMD Yep. Rheum was blaming me for my high blood pressure

This 🧵nails it! Sjogren's is often trivialized. Patients are judged when they look well, but can't function d/t extreme fatigue, pain, dysautonomia. The acceptable part- dryness- is overemphasized, and systemic problems are missed, dismissed, or treated as a character flaw.

@NeuroSjogrens Because there is no treatment

Same with #Sjogrens- doctors often offer no treatment of this common & commonly disabling condition.

@lupuscyclopedia @Novartis @SjogrensOrg Why won’t #novartis release the data on seronegative patients?

❣️Better hope for #Sjogrens patients soon... fingers crossed!! This year, my dream is to finally have a systemic drug FDA-approved to help our patients! Ianalumab! (yuh-NAHL-oo-mab) novartis.com/news/media-rel… #ianalumab @Novartis @SjogrensOrg