What's Undifferentiated Connective Tissue Disease? How am I doing?

It was August 2019, right in the middle of summer that I first started to get sick, leading to my diagnosis of an autoimmune disease - Undifferentiated Connective Tissue Disease (UCTD). Living with my UCTD for 12 months has forced me to adapt, as UCTD is a lifelong disease that has no cure, but it is manageable. Here’s a bit of background about ‘my’ UCTD which, if you have been diagnosed with UCTD will be different to your experience of UCTD.

Introducing UCTD and Connective Tissue Diseases

There are 80+ connective tissue diseases. Typically, UCTD involves symptoms of ‘classic’ autoimmune diseases such as Lupus (SLE), Rheumatoid Arthritis (RA), Scleroderma and Polymyositis. Each of these diseases have their own characteristic symptoms. When these don’t appear, then it is categorised as Undifferentiated Connective Tissue Disease. There is also Mixed Connective Tissue Disease (MCTD) - which is an overlap of 3 diseases, so it is different and not to be confused with UCTD. Sometimes, after 3-5 years people go on to develop symptoms of one or the other ‘classic’ connective tissue disease … sometimes people stay with UCTD. Some people don’t require any treatment … that is not me.

My UCTD diagnosis

My diagnosis in 2019 was based on test results and pre-existing symptoms that include:

1. ANA positive result with a speckled pattern, which is also found in people with SLE or MCTD and
2. DNA antibody (dsDNA) positive result, also characteristic of SLE, and
3. Pre-existing Reynauds syndrome, which is characteristic of several of the connective diseases, along with
4. Arthralgia - swollen fingers, painful joints, and
5. Low-grade fever.

As my UCTD was diagnosed in a relatively short time span, and I started medication, it might be that ‘classic’ symptoms of one disease did not have time to fully develop. Let’s see what happens in the next one to two years.

Where am I now?

I’ll cover this in more detail but for now - I’m on a combination of conventional disease-modifying anti-rheumatic drugs (DMARDs) to control my UCTD and my test results are pretty good.

I still have symptoms like:

1. Swollen fingers, ankles,
2. Arthralgia - Tender / Aching joints
3. Rashes on my face from the illness
4. Difficulty sleeping or staying asleep due to pain.

So on top of my DMARDs I’m taking a regular (4x daily) cocktail of pain medication to keep on top of chronic pain.

You are not insane, UCTD is real - be mindfull, show grattitude towards yourself and living with UCTD will be easier.

Linkage

• Medicinenet - MCTD vs UCTD
• West Suffolk NHS - Patient Leaflets - Autoimmune Diseases (UCTD)

Meet the author

Damien Saunders
An experienced management consultant and business leader interested in digital transformation, product centred design and scaled agile. If I'm not writing about living with UCTD (an autoimmune disease), I'm probably listening to music, reading a book or learning more about wine.