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Undifferentiated Connective Tissue Disease

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

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@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.

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@marymaryoregon

Yes, autoimmune diseases are heterogenous. Multiple pathways and targets are involved, and every patient is different. However, in CAR T clinical trials, Lupus patients had the best responses. Looks like most (if not all) Lupus patients achieved long term remission. Speaking from personal experience with scleroderma post autologous SCT, no current therapies (including transplants) can significantly reverse internal organ damage, when that occurs. If there is a way to get treated early on, before that happens, it could be most effective.