Last year I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD) - an autoimmune disease. Living with UCTD has forced me to adapt as UCTD is a lifelong disease that has no cure, but its manageable. One thing I noticed is a lack of information specific to UCTD - here I want to write about the importance of time - prompt diagnosis and also the time it takes to ‘recover’.
This is part of my continuing series on Things I’ve Learned with Undifferentiated Connective Tissue Disease (UCTD) - an autoimmune disease. UCTD is a lifelong disease that has no cure, but its manageable. You can read more in this series - see the published articles next to this on the right.
Introducing UCTD and Connective Tissue Diseases
Typically, UCTD involves symptoms of similar 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.
You can read more about my UCTD diagnosis and how I am doing.
1. Prompt diagnosis
I was ‘lucky’ … I saw my GP two weeks after pain and symptoms started. My doctor arranged a bunch of blood tests and I was referred on to a private consultant. Armed with these early results, I knew it wasn’t RA (no Rheumatoid Factor) but I was unwell: anaemic even, which is hard to believe when you’re a low-carb, high protein keto diet, and I also have Raynauds. I’ve come across many stories of people taking years to be diagnosed and with an equally complex case history that is not limited UCTD.
So a prompt diagnosis of UCTD is possible based on specific tests, the results and also the symptoms you have.
2. Treatment Time - it takes time
Prompt diagnosis and early detection are said to be important for starting a treatment path and (hopefully) slowing illness progression (ie joint erosion). Early diagnosis should also make it simpler to treat symptoms, before symptoms become acute.
But everything takes time - a staggering amount of time. During which you live in a time-bubble of waiting for things to work.
My initial treatment was an intra-muscular injection of corticosteroids - as an anti-inflamatory. I was then to wait 3 months to see if that would ‘cure’ me. It didn’t - I was back to see my consultant after 2 months. This was alongside the daily cocktail of over the counter pain medication.
My first medication was Hydroxychloroquine (HCQ) - this was my introduction to disease-modifying anti-rheumatic drug (DMARD). I had to take this for 2 months along with a daily dose of steroids. The steroids are there to help you as your body adjusts to the newer drug - relieving the flare symptoms. During this period, my rheumatologist had my partner and I hoping that my UCTD would be easily treated with 1 tablet of HCQ twice daily. It wasn’t - but it didn’t stop me wishing every day that this was the cure-all treatment.
Everyone is different - tolerance of drugs, side-effects and benefits gained from medication - but it takes time - it takes around two months to just get up to standard dose - HCQ is really upsetting for some people. I had problems with night time vision and driving became difficult as my eyes became super sensitive to any bright light, these went away after 6 months.
Unfortunately there comes a point when anxiety kicks-in. ‘It’s not working’ becomes a daily thought, followed by the gloom of ‘I need more drugs’.
My third medication was Methotrexate (MTX), is well known as a cancer treatment drug - taken at much higher doses, but at low doses its been used for treating auto-immune diseases for decades.
MTX is taken once a week, initially for 4 months at a low dose. Then it was increased to ‘maximum’ low dose of 8 x 2.5mg pills. Taking MTX weekly was now in addition to the daily dose of HCQ, and steroids. I’ll write more on my experiences with MTX, because it does cause gut problems and it has its side-effects.
There is so much time spent waiting for a cure - initially to see how your body reacts as these drugs are toxic. Looking back - I hoped for a wonder drug, my consultant continued to be positive and this wasn’t a good combination. It’s all anxiety inducing. But stick with it.
Start treatment early, there are many treatment options available - pain medication, steroids and there are many DMARDs to try - but it all depends on your UCTD.
You are not insane, UCTD is real - be mindfull, show grattitude towards yourself and living with UCTD will be easier.
I was diagnosed with UCTD in 2019, one thing I have noticed is a lack of information specific to UCTD. If you found this helpful, please let me know … it’s encouragement to keep writing.