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I cant exercise, because dysautonomia. And fatigue I had 2005-2019, then got rid of it after IVIG + abx (I guess something metabolic) but at the same time, GPCR aabs went to 0 so prob related (personally I think metabolic like this article suggests, due to low intestinal mobility...from...

Metabolic Disorders Causing Fatigue in Sjogren’s Syndrome ABSTRACT NUMBER: 2546 Metabolic Disorders Causing Fatigue in Sjogren’s Syndrome Lakshmanan Suresh1, Julian Ambrus2, Long Shen3 and Sahana Vishwanath4, 160 Pineview Drive, State University of New York/Buffalo, Buffalo, NY, 2100 High St...

There are actually 2 case reports in CAR-T BCMA research on NMOSD, 3 out of 13 patients had also Sjogren's (or better say Sjogren's caused their NMOSD). Patient 9 was 37, patient 10 was 67 years old (i guess relevant for ability to recover)

CAR-NK CD19 is being tested in China for Sjogrens so hopefully they release case reports early. SLE case reports look good but they released them within 15 days so no antibodies data, just SLEDAI Scores that dramatically dropped. Big advantage over CAR-T is much lower toxicity (I read it's given...

From lupusencyclopedia Join us FEB 3 at 5PM EST for an online talk about CAR-T cell therapy in...

As it was mentioned CD19 might not be enough for patients who have their illness run by autoantibodies produced by LLPC, so promising CAR-T is moving to dual CD19- BCMA target in autoimmune as well in US (in China CD19- BCMA was the target from start) Autoimmune CAR-T: $AUTL Obe-Cel & BCMAxCD19...

They have CAR-T brand in Australia costing $50K.. and I've heard of other places too, in general doesnt have to cost this much. For HSCT many pwMS and other autoimmune go to Russia and Mexico, that's the future of CAR-T too if the early results (in first half of 2024 i hope) for MS are...

this is bispecific BCMAxCD3 targeting plasma cells, but there is as we mentioned CAR-T targetting BCMA so wont be surprised if used at one point too...or it curing allergies in people who receive it for autoimmune

They picked young people on purpose because in the lupus mice model CD19 was enough only when early lupus, at later stages more autoantibodies are produced by LLPC thus CD19 wasnt enough. But there are also case reports of 3 older lupus patients, from Spain, with Novartis CD19 brand and for now...

From 2005 -2018 I thought I had MECFS, never heard of POTS or SFN. Then in 2018 I was diagnosed with that, and I figured I have Sjogrens because my SSA came borderline once and my aunt has Sjogren's, I had no dryness at all from 2005-2019, salivary gland ultrasound normal, ANA usually negative...

Rituximab doesnt delete CD19 or CD20 positive cells deep enough, the significant % in tissue and lymph nodes stays and this is the most common reason why it fails when it does. You can hear that explained in prof. Schett's video I posted. as the image shows. After that long living PC are a...

There are autoimmune studies with dual CAR-T that hits also LLPC, some case reports are already published. 18 cases with SLE cCAR-T with BCMA+CD19, it's a small biotech by USA based Chinese doctor, he told me BCMA Is absolutely needed for Sjogrens due to LLPC aabs... I've seen a number of cases...

A likely* legit brand of CAR-T is available outside of a trial, for SLE (and SS or other more severe autoimmune) indications in China, $100,000 for CD19, and CD19+BCMA is $150K. *seems so but we're still assessing them! In Mexico they barely even do it for cancers, as of recently, they buy...

Well, I have my ways ;) I am not a clinician, I am just obsessed with CAR-T for almost 3 years ;) and not sure what data is confidential, exactly, surely not the one i got from the patients themselves :D As they are allowed to talk about their own life Same applies to the researchers, as you...

Nope, all of those patients failed cyclophosphamide, and with CAR-T they dont get much higher cyclo dose than the standard monthly dose for lupus nephritis! I spoke to almost all German patients and researchers. Whoever commented that just wanted to say something skeptical. Cyclophosphamide...

CAR-T and monoclonal antibodies can not be compared. Rituximab targets CD20, but for example, monoclonals that target CD19 badly failed in lupus, while CAR-T that targets CD19 cures the majority of lupus patients (not all because some need to target BCMA too for LLPC -long-living plasma cells)...

I had to log into this forum only to comment this, because I am worried about anyone, especially a person regarded as expert, spreading such information on forums where patients are taking advice srsly, that they lack in RL so the opinions like this have even more weight. Rituximab failed in...

for me this appeared (red) last night, lasted few hours and today back to my usual (still swollen nose tip but not noticable unless someone really knows me well) since 2016 constantly, after "herx" on bactrim. bbut i feel in trachea and chest "new" thing, hope it's not related. today...

Ow. I feel like i belong here too. :( I had intemittent swollen nose tip since early childhood, i always felt like i have 2 versions of face based on my nose shape that got distubed occassionally. But it never hurted until 2016. Now seems to be flaring after IVIG (or after skipping next dose...

I am poster child for this. Except no 'onset in 30s part', more like onset in 10s part . SS-A positive, 8/9 CellTrend positive, Anti-TPO, anti-TG Hashimoto, childhood PANDAS, tilt test showed POTS but i have to repeat it. Seems it is neuropathic + hypeadrenergic POTS because my BP also goes...