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Do you know about anti-ku? A person I know is doing CAR-T with anti-ku. He has myositis & SLE. low anti-dsdna. But he goes for CAR-T mostly for his myositis as he is in a wheelchair. We were wondering is CD19 enough for him...

Dual is the best but perhaps too aggressive & only BCMA has good results too but its all up to 2 years follow up so might be too optimistic to say so BAFF is against all 3 receptors; BCMA, TACI and BAFF-R.

I have heard of mostly relapses/failures of treatments w CD19 when Sjogrens is also present (usually with neuro illnesses) so i'm glad to skip that. What surprised me is that it seems that often CD19 doesn't even give a temporary relief if your antibodies are not gone.... Or the relapse is too...

a SLE patient with RA is in remission of RA from cd19. I think the same patient has SSA, not sure..and had a flare up of nephritis so you can count that as a relapse, but with staying positive to antibodies was she even in remission?! And I think myositis patient also relapsed , but they didn't...

I tested 3x over the reference range for anti-smith in 2023, now it was negative. I bet they didn't even test ENAs after ANA 1:80, just wrote its negative.. Because i wanted them to test it, they barely agreed... And the positive was in the other hospital but same testing kit I believe... What...

seems CD19 wont be enough for MS, ... at least based on OCB just dropping in 1 patient and persisting in other, that's discouraging. It might still work very very well better than whatever they have now (like CD20 monoclonals or HSCT), but I read and think these 2 case reports indicate you need...

No, I haven't heard anything for Graves, except maybe running into the same study you shared here. It seems definitely far from happening for diseases like Graves, as you said because it's relatively easy to control comparing to others, and also preconditioning chemotherapy is still too high for...

I know CAR-T aimed at B-cells for antigens of MusK and DSG3-CAART for pemphigus vugaris, failed, with or without chemo preconditioning. Do you think Sjogren's w SSA or SSB would be a good target for CAART? I think I saw study in mice for SSB, but makes no sense with a disease with so many...

It will be soon 3 years for the first [German] patient (it was done 1+ years earlier in China and because they used CD19-BCMA they have even better results). The data from Chinese researchers from January/2023. I spoke to the main researcher last weekend, who is a hematopathologist in NYC, and...

I never expected that I, as a MECFS/Sjogrens/POTS/SFN person can be cured by CD19 alone, I feared for 2 yrs it will require BCMA. Seems Chinese recognized this earlier so do more of these BCMA alone trials! As it is already clear significant % of autoimmune illnesses and/or patients is not...

https://pubmed.ncbi.nlm.nih.gov/37147113/ Abstract Objective: Identify autoantibodies in anti-Ro/SS-A negative primary Sjögren's syndrome (SS). Methods: This is a proof-of-concept, case-control study of SS, healthy (HC) and other disease (OD) controls. A discovery dataset of plasma samples...

Just to make it a bit more clear that the seronegative Sjogrens (no SSA) is not a made-up thing by private physicians, but it is included in the official SS criteria because it is extremely common (thus a lip biopsy is indicated when no anti-SSA) ongoing research on the novel antibodies in...

yeah very impressive. Just afraid if anti-BCMA would make relapse earlier than when also CD19 used, and if we need both

I am not diagnosed by private physicians, I am diagnosed in a University hospital with a lip biopsy They don't need to change the definition of Sjogrens, you can keep it for advanced cases to diagnose it only after it has already destroyed/attacked glands enough to be symptomatic and ignore the...

https://www.pnas.org/doi/pdf/10.1073/pnas.2315990121 25 year old patient with Sjogrens / immune-mediated necrotizing myopathy (IMNM) successfully treated with anti-BCMA CAR-T therapy (IASO Bio, China). Follow up: 18 months

Depends on the study, testing method etc. So can't be concluded yet. Thus, open discussion. Same applies for Sjogrens...you'll find study saying both. Why kill it with conclusive answers... Anti-M3R was significantly elevated in SjS plasma in comparison with HC, SLE, or RA (P < 0.01). SjS...

I think the benefits in my case were from reducing bacterial overgrowth /SIBO in the beginning, 10+ days, and then overkill. I get the same improvement and then crash with nearly all broad-spectrum antibiotics - oregano oil pills did the same and then I almost ended up in a wheelchair with a...

Many of us were diagnosed without dryness and/or SSA, with lip biopsy. My lip biopsy showed 1 focus score even before I developed dryness, over 5 years ago If you want, the fact we tend to develop dryness (and SSA) after small fiber neuropathy, can be viewed as a coincidence or comorbidity. For...

I can barely spit, and recently had my saliva volume measured and they said it's normal. I couldn't believe it. The ref. range for saliva volume is not standardized as per age. So if you're a younger person it's even harder to have it told it's dry. I had absolutely no complaints of dryness...

See the studies below. Also, note, as you mentioned with ME, in Sjogrens research the problem is they do it on some cohort they had recognized, and almost nobody I know with dysautonomia is part of that, because we're on average 20 years younger. So delay in dryness symptoms is even longer than...