I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD) in August 2019. UCTD is a disease of the auto-immune system. It is a life-long, chronic illness marked by periods of flare-up (in inflammation and pain). UCTD has to be diagnosed by a specialist - and there is mixed opinions about disease progression - some people go on to develop Systemic lupus erythematosus (SLE), or Rheumatoid Arthritis (RA), and some stay with UCTD.
It’s been 11 months now and I thought I’d share some insights and my reflections.
At the start of 2019, I had randomly broken out in eczema on my arms, face - which wasn’t responding to treatment ( I’d last had eczema as a child). I was frustrated. I tried allergy tests and at one point the specialist vaguely suggested I should move back to Australia.
Work was busy, I was trying to find a new place to live and involved in the sale of a property - so there was a lot of stress, but I thought it no more than usual. I’d had an operation on my shoulder, neck in late 2018 and was suffering with nerve pain and neuralgia in my arm / neck / shoulder … added to that, I have a history of Raynauds in my feet and hands.
Then, everything in my life fell apart, so fast. Right in the middle of summer, my hands and feet started to swell up and stayed swollen, I had a low grade temperature and was exhausted. My joints stayed swollen for several hours each morning and everything was mirrored - both wrists, both hands, knees, ankles. The pain would go away for a few hours in the day and I was using over-the-counter analgesics along with Neurontin (gabapentin) for nerve pain … After 2 weeks it was time to go see the Doctor. Any hopes of this just going away were dashed.
Initial treatment and diagnosis
My diagnosis was swift - In this, I seem to be lucky; reading other patient stories, some have waited years for their diagnosis.
From when I saw my GP to seeing a specialist was 2 weeks. Initial blood tests results showed it was not RA, I was anaemic and had a high CRP - so I had some inflammation. At the initial consultation I was given a big injection of dexamethasone steroid and left with the hope that this would just go away. I was told either this will work or you’ll be back in 6 weeks.
Follow up blood tests confirmed I have a auto-immune disease - positive ANA with speckled pattern - which can be associated with SLE. I was also positive for anti-double-stranded DNA antibody (anti-dsDNA) test. I had ultrasound scans on my shoulder, wrists and ankles - the first two showed inflammation and thickening of the synovial membrane.
The treatment medication takes weeks to build up in your system (like 8 weeks) - so its a long slow process. I had to adjust my expectation of finding a cure and accept that this takes time. We only added drugs / changed dosage progressively.
Worst experience so far - UCTD and long haul travel
I was apprehensive about a recent holiday to the other side of the world. What will my body do while flying for 24 hours? How painful will my jet lag be? How will my disease cope with 13 hour timezone change?
I was right to worry - after our 2hr stopover, the pain kicked in and I was glad to have packed pain medication (paracetamol, codeine, naproxen). My first night in NZ, I puffed up like a balloon and couldn’t stay asleep because of pain / jetlag.
But the flight back was worse - we stopped for 12 hours in a 4 star hotel and I remember lying on the bed just wishing I had anything else to take for pain. But not able to sleep. If you’re reading this and about to travel - take all the medications you need on the plane and extra.
What’s my medication routine today
I feel my UCTD is mostly under control - But its not stable - my hands still swell up some mornings. For the past 2+ weeks my ankles are painful in the evenings and some nights keep me awake.
My routine with medication is now - I take methotrexate (MTX) each week, Hydroxychloroquine (HCQ) daily. I feel I need to explore other combinations of treatment to see what helps. I take analgesics as needed (stopping naproxen cause I think it gave me an ulcer). I’m off the steroids and hope to stay off them for a while.
Where to next … road to stabilised treatment
I think I’m lucky to still be seen privately by a consultant specialist - a downside is that my insurer will not pay for any of my medication.
I’m hopeful to find a treatment / medication routine that doesn’t require regular analgesics - maybe that is wishful thinking?
Coronavirus and UCTD
Coronavirus lockdown and UCTD was scary - given drug combinations I was vulnerable / needed to isolate. I worry about catching this, but hopefully coming off steroids has reduced that risk.
It is very irresponsible to say to people to take hydroxychloroquine when the benefits are unknown, and I was worried that I wouldn’t be able to get this medication during the lockdown. The side-effects of taking HCQ - allergic reaction to sun, stomach pains, blurred vision - are intense. So why would you?
I expected a quick fix and that didn’t happen. I’ve had to change my expectations around the disease and accept that there isn’t a sure-fire cure.
11 months on, I’m mostly living with the disease, adjusting my life, gym, etc to cope with symptoms and pain. Let’s see where I am by the end of 2020.
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.