Well! I just don't know what I have.

[RosieA]

Over the last few months I have been on the NRAS forum - chatting away as it was the site I was directed to. Diagnosed with inflammatory arthritis, with moderate disease activity and later Sicca and a positive Schirmar test. Have been on MTX injections, Leflunomide and now HYD and PRED. The first two I sadly did not tolerate, with LEF certainly the worse, with mouth and throat sores within 48 hours.

So, after my last discussion with the Consultant, the idea of UCTD came up. Recently, both cheeks came out in a rash after being out on a cloudy day for 20 mins without my hat. I was also left with two small round patches of scaly red skin which have now faded to light brown, sound familiar? I am ANA positive but other antibodies negative. Soooo! Looking I suppose for others in this situation. I put UCTD into the Health unlocked search engine and it invariably comes over to the Lupus site.

I understand (but will probably be wrong) that with UCTD some people may go into an automatic remission, some stay in a 'milder' form of disease and others go into a full blown CTD. Am I right? Still wondering though why the search engine really points the way to the Lupus site. I suppose I am in search of answers like so many before me. Hope someone can shed some light and enhance my very general understanding. With kind thoughts to all.

[Paul_Howard Partner LUPUS UK]

Hi RosieA ,

Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support. We have quite a few members with a current, or previous diagnosis of UCTD who I'm sure will introduce themselves. You may also wish to find some of their past posts with the search feature.

I'm sorry to hear that you've had difficulty tolerating the treatments you've been given so far and hope that your latest treatments will be better for you. Keep us updated with how you are getting on.

You're right that it is difficult to predict the path for someone with UCTD and whether it may go into remission, continue with current symptoms or develop into a more defined disease. UCTD is often called a "lupus-like" condition or sometimes "incomplete-lupus". People with lupus often experience a long journey to diagnosis and have many shared experiences with people who are diagnosed with UCTD.

[RosieA in reply to Paul_Howard]

Thank you. You have confirmed my understanding. I am now tapering down my PRED and will see what happens re my joints and fatique. Thankfully, I am tolerating HYDR at the moment and it appears to be the inital drug of choice for a range of automimmune conditions. Sometimes I feel that I am standing in front of a PIX N MIX - all indecision. Many thanks again for your response.

[KayHimm]

Hi RosieA,

As Paul says, there are a lot of us with a diagnosis of UCTD here. We used to feel like like orphans but the Lupus Forum welcomes us with open arms.

People with systemic autoimmune disease have their own shades and hues. People with UCTD can look very lupus-like and some more scleroderma-like. The main things rheumatologists do is put all of your symptoms and labs together to determine the best treatment. My rheumatologist’s response when I tell him other doctors want to know if I have lupus is, « Doctors like boxes. » So try to go with the judgement of the most knowledgeable person in diagnosis, which is probably the rheumatologist.

The trend seems to be to describe people as « early UCTD » and « stable UCTD. » Some people do evolve to lupus or another connective tissue, so they watch you closely.

You have a lot of company here.

K

[RosieA in reply to KayHimm]

Thank you K. I am lucky in that I trust my rhuemy team and feel fortunate that they are keeping a beady eye on me. I suppose, it's the uncertainty that weighs heavily. I am not confident that I have UCTD, I gather that as I taper off the PRED more might be revealed. If the joints in my fingers, toes, wrists and ankles start letting me know they exist again it might point back to inflammatory arthritis. Gosh, only a year ago I was blissfully ignorant. Having said that, I was reading a thread of posts talking about suffering food intolerances before diagnosis. I have not been able to tolerate any of the allium family for about 4 years. Made me quite poorly within minutes of eating. Oh the joys. So many thanks for responding, it's reassuring that there are others to chat to.

[KayHimm in reply to RosieA]

You are very welcome. I can understand your confusion but I can also see why your doctors are now thinking of UCTD. You have positive ANA, arthritis, Sjogren’s and photosensitivity. Sounds like a lot of us! I read one characteristic of UCTD is single auto-antibody profile unlike lupus that tends to have multiple antibodies doing damage.

I bet you will will hear from others who, like you, are on immunosuppressants and steroids because of more severe arthritis and lung issues with UCTD.

Take care and reach out for help at any time.

Xk

[Hayleyrose28]

Hi

I was originally only ANA positive, without other antibodies, making my diagnosis UCTD. I was told at this point that the disease wouldn’t progress past ‘mild’ - not meaning your symptoms feel mild whatsoever, but the risk to your organs becomes minimal. So, I guess in this way you’re more likely to go into remission if this is the case, but it’s all individual and I wouldn’t like to predict.

However, a year later I become DsDNA positive and now have antiphospholipid antibodies, with the former making my diagnosis switch to SLE. This may have been a change in my blood work, as my new consultant called it ‘seroconversion’, but I’m not sure the first private hospital tested the DsDNA in the way they should have previously (as far as I’m aware, there’s 2+ ways of testing this in the lab). Either way, there’s some people that remain with the UCTD diagnosis forever, despite their symptoms being really awful; or there’s people like me who can progress onto SLE, which personally makes my management a little more tricky with the antibodies found.

By inflammatory arthritis does that mean you’ve been diagnosed with RA? If so, I would have thought having a diagnosis of RA and signs of lupus may make you have MCTD rather than UCTD (May well be wrong here, but something you could explore with your doctor).

Hope that helps x

[RosieA in reply to Hayleyrose28]

Thank you. Yes, your response does help to clarify my understanding. Thank you. I think inflammatory arthritis is an umbrella term. I don't carry the RF and my inflammatory markers remain normal, although my DAS score shows moderate disease activity. I have read that joint pain can be the first reason people with a variety of autoimmune diseases seek help. I think at present I am staring hopelessly at the pick-n-mix deciding which to pick (if only it was my choice, I think I would resist temptation). I am tapering off the steriods at present and the Consultant is going to see how I fare. Many thanks again. x

[Hidden in reply to Hayleyrose28]

MCTD apparently carries its own specific antibody. And the mix usually includes Scleroderma I was told.

[Muff20]

Hi sorry you've not been well, you are in good company here. I too have been diagnosed with UCTD. I have symptoms of about 4 different connective tissues diseases but my blood tests are not clearly showing which one. My rheumatolgy consultant says it's definitely a lupus type condition but at the moment UCTD is the best fit. While on these sites and chatting to others my symptoms and problems are definitely more in line with the lupus group. It's a great source of information and support.🙂

[RosieA]

Oh Thank you. I do feel a fraud though as it might be UCTD or Inflammatory Arthritis with Sicca or!!! As you say, I do feel that I have more in common here, having read some of the posts. I think that my recent photosensitivity was a bit of an eye opener with me. Many thanks again for your response.