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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: May 9, 2023 | Replies (75)

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@marymaryoregon

Hey @bayhorse - here’s my understanding of UCTD based on a pretty extensive review of available evidence (Medscape, UpToDate, and many many peer reviewed journal articles. I am a healthcare provider (but I do not work in rheumatology). Basically, a whole bunch of rheumatologists from around the world have come together and put together “classification criteria” for many rheumatologic (autoimmune) diseases. The classification criteria are strict and are used to include (or exclude) people from research studies. In real life (not research studies), individual rheumatologists have to use their best judgment about the patient’s overall condition/picture to determine if a diagnosis seems right (like lupus).

I’m both over-simplifying (and being a little tongue-in-cheek), but UCTD typically looks like a “mild” version of lupus, or RA, or Sjögren’s (or a combo of those). I think that the “mild” mostly refers to not often having severe damage to internal organs (like the kidneys) and not to the person’s symptoms. Unfortunately, that international group of rheumatologists has NOT gotten together to clearly define either “classification” criteria (for research) or diagnostic criteria (for real-world providers). Most providers and researchers use this definition of UCTD: positive ANA sustained over 3 years plus at least one symptom of a “defined” connective tissue disease (lupus, RA, Sjögren’s, etc.). Then, over the next 3-5 (or up to 15) years, one of three things usually happens: 1) symptoms go away completely 2) symptoms stay steady or 3) the person accumulates enough symptoms or new auto-antibodies to update the diagnosis to lupus or RA or Sjögren’s or MCTD, etc.

I see that you initially posted in 2018. If you have developed new symptoms or new auto-antibodies, that might be why your provider feels you have tipped into a specific category.

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Replies to "Hey @bayhorse - here’s my understanding of UCTD based on a pretty extensive review of available..."

Thank you much for your explanation. I just posted a few weeks ago, so the 2018 date must have been related to an older thread. I was just diagnosed with lupus this past July. I am 71 now. But I got celiac disease and Ulcerative colitis in my early 30s, and was also diagnosed at the time with chronic fatigue syndrome. I never recovered from the CFS; if anything it got more and more debilitating. And while the worst of the celiac spruce symptoms -- severe nausea -- was controlled with the gluten free diet, I never recovered my energy. So the past 40 years have been basically a search for ways to function. I have had positive ANA in the past, but apparently not other factors which together would have netted the lupus diagnosis. Now apparently all the required ones are present. So I guess I belong to your "category 3." I really appreciate your explanation. My physician is not very forthcoming, in spite of my questions. Hence my presence in this group. BTW, you say you are a practitioner, and am wondering what your field is. In any case, thanks again!