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Undifferentiated Connective Tissue Disease

Posted by marymaryoregon @marymaryoregon, Apr 11, 2023

Autoimmune diseases are tricksy. Symptoms can come and go unexpectedly, test results aren’t always super helpful, so much about diagnosis relies on an individual’s judgment, and some of them have stupid names like “undifferentiated connective tissue disease” (UCTD).

UCTD doesn’t have an agreed upon criteria for diagnosis, but many providers and researchers use a definition of a positive ANA test for at least 3 years plus at least one symptom of a “defined” connective tissue disease (lupus, RA, Sjögren’s, scleroderma).

Some people with UCTD will eventually have enough symptoms (or positive test results) to change the diagnosis to lupus, RA, Sjögren’s, etc. A few people will stop having symptoms altogether. But the majority of people with UCTD will continue with that diagnosis.

I’d love to hear more about your experiences as I’m at the very beginning of my journey with UCTD. Has anything helped you in your day to day? How do you explain your diagnosis (or maybe/kind-of/might be diagnosis) to your family and friends? Does anyone want to help create some kind of patient support/awareness group or website or have any suggestions for existing groups or websites out there?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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marymaryoregon | @marymaryoregon | Nov 16 4:01pm
In reply to @altabiznet "Hello everyone, here is a link to a presentation for multiple autoimmune diseases, Lupus, Myositis, Scleroderma..." + (show)
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Hello everyone, here is a link to a presentation for multiple autoimmune diseases, 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/
Look for a presentation: Scleroderma Research in Action – Understanding Clinical Trials, with Dr. Gregory Gordon, Dr. Dinesh Khanna, Dr. Lauren Reinke-Breen, and Dr. Kremena Simitchieva

Another link with new research ideas is 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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@altabiznet I’m more of a: One definite autoimmune plus one (or more) chronic inflammatory (with likely immune mediated) diseases kinda gal. Know what I mean? I basically accumulated chronic inflammatory skin diseases until I ended up with biopsy proven lupus. Chronic urticaria, pityriasis rosea that one time, oral/genital lichen planus… finally lupus. I tend to be highly mucus membrane and skin focused. Though I did make my derm biopsy a hypertrophic lesion over my knuckle to rule out dermatomyositis- which was ruled out. And, I initially thought I had Sjögren’s, but my sicca symptoms are just part of my autoimmune everything. So, it’s just me. Hanging out being inflamed.

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Alta Net | @altabiznet | Nov 16 5:37pm
In reply to @marymaryoregon "@altabiznet I know, I know! I just don’t have the internal/end-organ damage to feel like I..." + (show)
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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.

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