In December 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’d been suffering from symptoms for a decade, and the diagnosis was a relief. Finally, I could start some kind of treatment and maybe get some of my life back!
There are a lot of misconceptions about UCTD, and autoimmune diseases in general. Part of the problem is, we don’t know a whole lot about them. We do know that the immune system gets confused and starts attacking healthy tissue. This can cause a lot of problems.
My disease, UCTD, is like the center of a three-way Venn diagram, with Rheumatoid Arthritis, Sjogren’s Syndrome, and Lupus the three overlapping circles. UCTD is at the center, meaning people with UCTD have symptoms from all three of these awful diseases.
It’s the best of both worlds.
The “undifferentiated” part means that the patient is presenting symptoms from all three diseases and their blood work doesn’t point clearly to any one disease. My symptoms and labs lean more toward Lupus. I have:
- joint pain and stiffness
- dry eyes and mouth
- hair loss
- numbness and tingling
- anti-double-stranded DNA (anti-dsDNA)
- positive antinuclear antibody (ANA)
Sometimes I have bladder and GI issues, but it’s unclear whether they’re related.
People with UCTD sometimes go on to fully develop one (or more) of these diseases. Sometimes UCTD just stays put. It can also go away entirely. My rheumatologist is monitoring me for kidney involvement, which is how we’ll know if my UCTD is developing into Lupus.
In all likelihood, my UCTD is here to stay; I’ve had it for over a decade now and it only seems to be getting worse, not better. Since my labs have been stable, though, it’s also likely that I won’t develop Lupus.
This doesn’t mean that UCTD is at all mild. Though it doesn’t involve organ damage, the joint pain and other symptoms can be debilitating. When I’m flaring, I’m mostly homebound, or even bedridden.
To treat my disease, I take 200 mg of Plaquenil and 500 mg of Naprosyn twice a day. I also take Tramadol as needed. My rheumatologist is trying to avoid putting me back on Prednisone because its long-term side effects are pretty nasty, and I was just on it for nine months. Unfortunately, I’ve been flaring since I stopped Prednisone completely. If the Naprosyn doesn’t help my joint pain and stiffness, we’ll try something else.
It’s also important for me to eat right, get plenty of sleep, manage stress, and exercise as much as possible.
Even though having UCTD has been quite the adjustment, I’m learning to live around it. I listen to my body, resting when I need to and being careful not to overdo it. I’m also lucky to have Mike, who cares for me so tenderly and makes me laugh even in the worst of it.