One of my diagnoses is undifferentiated connective tissue disease (UCTD) and while according to my new rheumatologist my disease seems to be more-or-less in remissions (still some mild symptoms) I wanted to talk about some misconceptions about UCTD that many people – patients, doctors, family members, allied healthcare professionals, etc. have about it.
- It’s a diagnosis given when they don’t know what’s wrong with you.
Not exactly, technically UCTD is its own diagnosis. It is given when someone has some symptoms of a specified connective tissue disease (like lupus/SLE or rheumatoid arthritis/RA) but doesn’t not have enough symptoms to warrant those diagnoses. Some of the confusion here might be the word “undifferentiated” which is vague at best, but isn’t meant to be that vague. There is also no diagnostic criteria for UCTD, meaning that differential diagnosis is used (the doctor doesn’t have a better explanation and uses a judgment call)
- It’s the same as MCTD.
Mixed Connective Tissue Disease is different in that in MCTD there are symptoms of several different connective tissue diseases present. This doesn’t occur in UCTD, where there are some symptoms of a specific connective tissue disease present.
- The symptoms aren’t that bad.
It depends on the course of the disease of course. The most common symptoms are joint pain and a positive ANA. Other common symptoms include arthritis, Raynaud’s phenomenon, rashes, alopecia, oral ulcers, etc. Again, not enough would be present to give an SLE or RA diagnosis for example. Most of these symptoms are not that fun. The good thing is that there is usually no organ involvement – the kidney, liver, lungs and brain are usually fine.
- It will turn into a connective tissue disease like SLE or RA.
Actually, probably not. Only about a third of people with UCTD end up with a specified connective tissue disease.
- It will drastically affect quality of life.
Controversial, but part of this is up to you. Here’s what I mean. So as in #4, only about one third of people end up with SLE/RA/etc. What about the other two thirds? Well, about one third remain with relatively mild UCTD. The last third end up in remission. The medications used are much milder than immunosuppressants (which is good!) and lifestyle changes can really affect the course of the illness moving forward. UCTD does not mean we should give up!
I hope this helps clear a few things up! I would love to hear what my fellow UCTD warriors think and if anyone has run into any other misconceptions about it!
Keep making the most of it!