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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: Nov 16 5:37pm | Replies (52)

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Profile picture for Alta Net @altabiznet

Hi @marymaryoregon,

CAR T therapy is showing promising results in lupus. It is still early on experimental, but in 1-2 years there may be an opportunity to participate in the late phase clinical trials with already proven safety and efficacy, or possibly to have an approved therapy. Best advise - do your own research and stay strong for the next 2-3 years to get more promising new treatments. Here is a link to a presentation for Lupus, Myositis, Scleroderma and other diseases with ongoing clinical trials, posted at Patient's Forum at Scleroderma Research Foundation: https://srfcure.org/living-with-scleroderma/patient-forum/
Another link for new research posted on MSN:
https://www.msn.com/en-us/health/other/lifelong-drugs-for-autoimmune-diseases-don-t-work-well-now-scientists-are-trying-something-new/ar-AA1QnqzY

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Replies to "Hi @marymaryoregon, CAR T therapy is showing promising results in lupus. It is still early on..."

@altabiznet I know, I know! I just don’t have the internal/end-organ damage to feel like I should jump ahead of anyone else with lupus (she knocks on ALL the wood). But I love what the researchers are doing. Also saw the article in Science Translational Medicine looking at how EBV may transform B cells and affect the immune system potentially leading to lupus.

I remain skeptical that there is a single pathway to what we call lupus- I remain skeptical that there is, in fact, a single entity of “lupus” but what we have right now are probably a whole bunch of very slightly different versions of autoimmune diseases that end of with damage. And maybe someday we could get to a level of precision where we can go: oh, mine is “chronically inflamed skin genetic variation XYZ and excess mast cell degranulation with a whiff of urticaria”.

There have been some attempts to look at whole genome sequencing and look at clusters of gene variations and cluster patients together based on variations (sorry I don’t have references at my fingertips), but there just aren’t enough of us… and symptoms are so… overlapping? I mean- when the immune system attacks and something gets inflamed because of it- does it matter if the inflammation happened because this cytokine was produced or because that regulator one was out of whack? The end result remains the same, but you can see why it’s so darn hard to figure out why my lupus and her lupus and his lupus and their lupus are all different- the overlapping symptoms can all mush-mash together but the the various weird and strange pathways that brought us here… can all be slightly different.