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So they have no role in the disease or only locally? I know its only 1-24% LLPC on biopsies but if protected environment in salivary glands niches is not the reason that SSA persists even more than total IgG, even with teclistamab it is a huge difference, why it persists so much then? So...

But you said it's unlikely they persist in such a way as the shape of the curve suggests, calling it a lab artefact? Anyway, seems we can agree it wasn't. So seems those SSA antibodies whether they are from salivary glands or from BM, are harder to get rid of than even total IgG?! As they're...

You were referring to the SSA dropping slower than other antibodies and calling it an lab artefact. The link i posted leads to your post.

I thought it was well known that there is a reservoir of daratumumab-resistant cells. And the average IgG drop with rituximab isnt 54% You said it here: CAR-T thread

I mean, the drop with daratumumab was much higher than it ever happens from ritux so no, he didn't kill off only those, his IgG fell 54% in responders. I think LLPC in the tissues like in Sjogrens in salivary glands are even more resistant than those in BM, at least based on the data from...

I am sorry you're basically undiagnosed this long. It is to blame the ignorant rheumatologists - and we see it is ongoing in 2025, thankfully, most of them are soon to retire, and have little to no impact on science so better days are coming. Not too late to treat your neurosjogrens=ME

there is literally nothing to explain. The criterias keep changing, adjusting, humans decide on this, and humans are prone not only to error but also to changing their mind later. The criteria is flawed in many ways, the underlying illness has many patterns and humans try to translate it to a...

My clinical symptoms were 99.99999% neurological MECFS,POTS,SFN, took 15 yrs of UNTREATED to develop dryness. And I still dont fit the official crtieria with "normal ultrasound of salivary glands, normal saliva volume, no ANA, no ENA." yes i tested borderline pos Ro60 couple of times, more...

Labs never call 1:40 positive. This is only research, clinics dont operate like this. And yes, 1:160 is significant because gives 5% chances of being "healthy". 1:80 is also still significant. if CLINICAL Symptoms exist, and we are all here with symptoms, aren't we.

We literally said the SAME thing. 5% 'healthy control at 1:160 have positive ANA, so 1 in 20 chances to happen in healthy person. (allegedly healthy). That is low. Very unlikely to be healthy at 1:160 Plus, you know you're not healthy so for you is 100%. Plus, EULAR often counts both, you and...

indeed they're not diagnostic of advanced SjD as defined by a group of rheumatologists. Thus it's a circular argument why they aren't diagnostic. In reality, if you have any of ENAs, or even ANA, the chances are high that you have autoimmune disease (statistical chances, not my opinion). For...

https://www.cell.com/cell/fulltext/S0092-8674(25)01088-8 Highlights • Five progressive multiple sclerosis patients were treated with anti-BCMA CAR-T therapy • The treatment caused plasma cell depletion in the central nervous system of the patients • The CAR-T cells showed prolonged expansion...

That's all old criteria, if new research shows ME is autoimmune then 'having autoimmune wont exclude MECFS'. And the criteria you posted even includes comorbid 'sicca syndrome' (aka Sjogren's) because it's so common that they observed it as comorbid (while it is actually the same illness). I do...

SFN is not in exclusion criteria, so what are you pointing at?

No. Having autoimmune marker doesn't mean they don't have ME. Oh My God! Maybe it means their ME is autoimmune? (Also causing SFN). ISN'T THAT the dominant theory behind all Norwegian trials? Why do people on this Forum act like it's something unheard of or completely unlikely SFN =...

You don't have to care what I believe; time will tell. i am okay with waiting, I am treating my autoimmunity and responding well. If I listened to brilliance found online where they often ignore ANA 1:160 for example, I'd remain untreated... doh I never said SjD always causes SFN or that SFN is...

yes, MECFS (PEM) is a symptom of SFN, from blood flow abnormalities -tissue hypoxia, that's my true belief. At least in up to 70% of patients with ME who have SFN. The most common cause of SFN is Sjogren's too, but if we say ME is a form of dysautonomia caused by SFN, Sjogren - dysautonomia is...

The rate is probably higher indeed. Any study proving the opposite? They never took big enough number of ME patients to even demonstrate this. It is a strange observation without providing numbers. You need 1000 MECFS blood samples for SSA - Both Ro60 and Ro52 to demonstrate that perhaps 20% of...

If the results seem to be good, I wonder after all this back and forth, what is the point and what is the reason you were not accepting the data that 30-40% of MECFS have confirmed SFN and some claim it is a bigger number when multiple sites are biopsied, as some have non-length-dependent SFN.

day of the week? Can you provide a source? How would they possibly repeat a biopsy in the same week cos you get a wound on your leg that takes weeks to heal, so you might be saying they repeated it on the other site of the body? It is still not too relevant for non-length-dependent SFN which is...