Undifferentiated connective tissue disease (UCTD)

[Covidcabana]

Hello,

I've recently been diagnosed with UCTD and started on hydroxychloroquine around 8 weeks ago (don't feel a difference yet but I know it can take 12 weeks to kick in).

I was wondering if anyone who has been diagnosed with this could shed some light on how they handled it/their disease progression? For example, do you have any tips for managing? How long did it take for hydroxychloroquine to help? Did you progress onto a different diagnosis?

Thanks!

Edited to alter typos - curtesy of sore sausage fingers.

I understand about the sausage fingers sadly. I was briefly diagnosed as this, though what the consultant actually said was that I did seem to have an auto immune connective tissue disorder but didn’t seem keen to commit to anything more. About 18 months later I was diagnosed with systemic sclerosis (limited cutaneous). I am not on immunosuppressant meds but on lots of medication for different symptoms. I am in my sixties and semi retired/self employed so can go with the flow of how I am day to day. I concentrated on finding as much as I could about the condition, appreciating that I could be a lot worse and then finding what helped. My hands are mainly affected but also digestive tract.
Hope you see an improvement soon.

No advice, but I'd love to hear responses as I'm on the same path. UCTD was suggested at my initial consultation with a rheumatologist, he sent me away with a leaflet about hydroxycholoroquine to think about before my follow up in June. I'm thinking I will try it, but I'd be really interested to see how you get on with it @Covidcabana and if it helps or there are any side effects. My main symptoms are fatigue, swollen sore fingers, dry itchy eyes plus a host of others that may or may not be connected!

I don't have advice I'm afraid, but wonder if I can ask about the symptoms leading to your diagnosis? I've just been diagnosed with inflammatory arthritis and offered hydroxychloroquine, though haven't started it yet. I've been given an initial diagnosis based on symptoms and an MRI, but have wider symptoms that I feel are being overlooked.

Thanks all, that's really helpful.

I started on hydroxychloroquine around 7 weeks ago and haven't felt an improvement yet. It's supposed to take 12 weeks to kick in so I'm still pinning all my hopes on it working. I haven't had any real side effects apart from a slightly itchy scalp.

My symptoms leading up to diagnosis were quite varied and a bit random (it sounds like you are all in the same boat here!) and developed over around 5 years:

• newly developed raynaud's in the last year.
• pain in the small joints in fingers and toes.
• lower limb weakness.
• carpal tunnel.
• swollen fingers.
• symmetrical red rash on my face (rheumatologist thinks this is rosacea rather than a malar rash).
• very dry mouth with changes to tongue shape (now scalloped at edges).
• fatigue.
• rash on chest when in the sun.
• a period of around 3 months just before diagnosis where I had stubborn/recurring chest infections and oral thrush.
• presence of anti-centromere antibodies (had these for over 6 years but wasn't even told when they were first found).
• weakly positive rheumatoid factor.

I think without the antibodies and slightly elevated rheumatoid factor I wouldn't even have got a referral to the rheumatologist which explains why we all find it so hard do get an accurate or timely diagnosis.

Sorry you've had to contend with all that @covidcabana I hope you benefit from the medication soon.

I had negative bloods and had to advocate so hard for myself to be referred to rheumatology. It's been a long year waiting for answers. Clear joint involvement on MRI has been key to my diagnosis of Inflammatory arthritis, but in the absence of positive bloods it's being left non-specific at this point.

The joint problems have been ongoing for a year. But other things I think could be connected have been a problem for much longer - extreme photosensitivity for 12 years, Raynaulds, Chillblains, rosacea, Plantar fasciitis, achilles pain. Some similarities in your symptoms. Perhaps specific diagnosis doesn't matter if the treatment is the same, I'd just prefer clarity!

And fatigue! Oh the fatigue!

I was just about to start a thread!

I'm interested too, after feeling awful in 2020 I had an initial diagnosis of sjogrens, which was then changed in the follow up letter to UCTD.

My symptoms are muscle aches, low grade fever, some sun sensitivity but only on legs, alopecia areata, and just generally feeling like I have a low grade cold, flu.

I have good days and bad, and tend to flare up after going out too hard or lack of sleep

I was prescribed with Hydroxychloroquine but stopped taking it after a year as I don't think it actually helped me and the possible side effects scared me

I don't think my condition has progressed as such, I don't get fever and chills the way I did, and I find two ibuprofen tend to get rid of the body aches for the day. Have just had a notes review where I told them how I'm currently feeling, so let's see if they give me any additional meds.

The hair loss freaked me out, but it's only been in two small patches and regrown.

Love to hear about other people's experiences