UCTD and progression: Hi everyone, I was just... - LUPUS UK

LUPUS UK

29,043 members25,455 posts

UCTD and progression

Happy43 profile image

Hi everyone, I was just wondering if any others with UCTD could share their journey and whether any progression to another autoimmune disease has developed and the diagnosis changed over time. I have read online about this happening, just wanted to hear about others experiences here. Thanks 😊

44 Replies

Just a quick reply, Happy43

I was daignosed with UCTD in May 2016 but at the time had insterstitial Lung Disease, so it was described as UCTD 'with overlap'. Since then, the ILD has resolved, but I've had an episode of polymyositis. So the diagnosis is still a little fuzzy. I'm heading to London next week to see Dr Patrick Gordon (a specialist in myosistis) and it'll be interesting to hear if he thinks a different diagnosis is more appropriate x

Happy43 profile image
Happy43 in reply to whisperit

Hi whisperit thanks for your reply. I started getting muscle pain/weakness in my arms and legs in December last year, along with temple pain. My GP tested inflammation levels and mentioned Polymyalgia Rheumatica but the tests were normal. I still get it from time to time and find lifting and walking up stairs more difficult when it flares. My shoulders are also affected, I nearly dropped the kettle the other week as it kept giving way. I hope your appointment next week goes well and you get some more information on your condition 😊

misty14 profile image
misty14 in reply to whisperit

Good luck Whisperit, for your appointment with this myosotis expert. I do hope he can help. If you need anymore insomnia info the NRAS has a helpful leaflet with tips and advice from their website. Keep us posted how you get on. Fingers tightly crossed. Xx

whisperit profile image
whisperit in reply to misty14

thanks , misty x

I was first referred to rheumatology with what I called a sore finger! Before that, my main problem was with acid reflux which I ignored until I’d lost a great deal of weight and was found to have an ulcerated oesophagus

After the first rheumatology visit, my blood was A pos and other bloods suggested possible Systemic Sclerosis. The Secondary Raynaud’s was quite obvious without testing. I’ve since acquired early Sjögren’s and am generally seen at to CTD clinic within rheumatology.

At the moment, most interest is shown in my kidneys and double incontinence. In general, I really don’t mind what anything is called as long as it’s treated.

I have a great deal of pain in the hips and base of my spine, helped by BuTrans patches.

Oh, and the sore finger has now become fingers.

Thanks 😊

Thanks Lou and Happy. I'll post here next week if anything of interest comes from it x

Hi I’ve just been diagnosed with Connective tissue disease after symptoms of pain and severe rashes since October

The lupus nurse suggested I describe it as mild lupus.

I had a mildly positive Ana.

Just started medical quinine and on amitryptaline for pain

Happy43 profile image
Happy43 in reply to Lupusfairy

Hi Lupusfairy thanks for your reply. I hope your treatment works and you feel better soon 😊

I have been fortunate to have stayed in the stable UCTD category. In fact, with sun avoidance and maybe estrogen declining with age, I improved greatly with some GI issues and others along the way. I developed autonomic neuropathy in later years and have always had mild CNS symptoms likely due to being aPL positive. My doctor describes my progression as « slow. » So you have reason to hope. If UCTD is stable in the early years, that is considered a good sign. The likelihood of brain and kidney involvement is very low.

Good article: HSS, undifferentiated connective tissue disease, for patients

K

Happy43 profile image
Happy43 in reply to KayHimm

Hi K thanks for the article. It's reassuring to read that less than 20% of patients go on to develop a definite CTD. I hope you continue to stay well and that your progression remains slow. Thanks 😊

KayHimm profile image
KayHimm in reply to Happy43

How long have you been diagnosed and what are your symptoms?

And I am glad the article was helpful.

K

Happy43 profile image
Happy43 in reply to KayHimm

I was diagnosed in April 2018 with UCTD after showing symptoms of Scleroderma and Lupus. I have Raynaud's, GAVE, lupoid rashes, athralgia, hair loss, dry eyes, fatigue, muscle pain/weakness, IBS, chronic sinusitis, splenomegaly, osteopenia, iron, vitamin D and calcium deficiency. An ultrasound scan of salivary glands and parotids in September showed early changes of Sjogren's. A mix of symptoms, I don't think they know what to do with me! I'm Ro-antibody positive, ANCA positive with MPO and ANA and AMA positive.

Roarah profile image
Roarah in reply to Happy43

How are your symptoms being treated presently? IBS malabsorption often leads to vitamin deficiencies and vitamin d deficiency is a possible precursor to autoimmune and vascular disease. Have you received any treatment options to control your IBS? Have you had an MRA or biopsy to check for vascular occlusion or vascultiis. If you have a history of stenosis are you on a statin? With the positive ANCA one should rule out vasculitis and be treated with steroids if you have signs of it. Did you receive a temple biopsy to rule out giant cell artretis?

I think untreated existing conditions can possibly create further ailments long term. To prevent further disease all underlying health issues should be addressed and hopefully managed.

Hope you feel better soon. Xo

Happy43 profile image
Happy43 in reply to Roarah

Hi Roarah, the IBS is treated with an anti spasmodic called Mebeverine. I had a colonoscopy last June which was clear. I've had CT scans for vasculitis and nothing showing active fortunately. I have mentioned the temple pain to my GP and she seems to think it is Trigeminal Neuralgia? I've had it since December. I'm still being assessed for possible PBC (AMA antibody) so no treatment for that yet. All deficiencies are being treated with supplements. Chapel Allerton have suggested Azathioprine as possible treatment going forward. The article KayHimm mentioned said immunosuppression is rarely used in UCTD? Confused 🤪

KayHimm profile image
KayHimm in reply to Happy43

Oh, it feels like that, I know. But they know what to do with you. Most rheumatologic patients come on many shades and colors. You have your own, and they will keep testing and evaluate and ultimately treat the symptoms. You are early in the disease so they have to see how you progress. There are some tests that sort of bias toward lupus but that is only speculation.

I read they refer to early UCTD and stable UCTD. You may be in the early UCTD category, and you will be watched closely for signs of lupus like kidney disease.

If you are photosensitivity, stay out of the sun. That is important in avoiding flares.

Best of luck.

K

Happy43 profile image
Happy43 in reply to KayHimm

Thanks 😊

kjoyinri profile image
kjoyinri in reply to Happy43

After 20 years of being told I have mctd or udctd last month I got a true diagnosis. In after blood work with high liver panels my pop sent me to a GI who ran more blood work... high AMA... and sent me for a liver biopsy. I have Primary Biliary Chalangitis grade 2 stage 3 and limited scleroderma. Still trying to wrap my head around this but glad they found out what was wrong so it can be treated properly.

Happy43 profile image
Happy43 in reply to kjoyinri

Hi kjoyinri that's interesting as I have been under investigation since 2015 for PBC, I am also AMA positive but the original liver biopsy and MRI were inconclusive. They now want to do another liver biopsy as a recent ultrasound and fibro scan show stiffness and scarring. I also have GAVE and Raynaud's which started a Scleroderma diagnosis but as time has gone on more antibodies have appeared and now I'm showing signs of Lupus and Sjogren's and am positive for Vasculitis although this is not active. Such a mixture of things, I do struggle to get my head around it all sometimes 🤪. I'm sorry it's taken 20 years for you to get to where you are but I hope you are getting the right treatment and feeling better.

Best wishes 😊

cctexan profile image
cctexan in reply to KayHimm

Sorry to jump in, I to have MCTD since2015...my current Rheumy has tried various meds since I developed a blind spot from planquenil. She won’t pronounce me w lupus yet?, even though I get sun rashes and ill. In the summer, I have mouth ulcers Sjogren disease, raynauds,and the blood work for lupus but there is a specific marker only MCTD ppl get. Which is good I guess. But I feel in limbo. Also it is so rare, even some drs don’t know it and I have to explain.

I am starting to get symptoms of scleroderma and that frightens me. And y’all mentioned it affecting the brain. I’ve been diagnosed bipolar for 23 years however it’s only been after my autoimmune illness that I’ve started having severe psychosis ( breaks) from reality for a few days. I’ve always wondered why now in last 4-5 years when it’s never happened? Is it bipolar or MCTD affecting me?

Ps to add I also began to have severe muscle wasting in upper arms and shoulders, and enough to drag my foot bc a tendon tore along my calf. Both Rheumy and orthopedic surgeon did not want to get a cause, just what pill can I throw at it? It’s maddening!

KayHimm profile image
KayHimm in reply to cctexan

Mixed connective tissue disease is different from undifferentiated connective tissue disease. Maybe your doctors could clarify which you have. That is concerning that you have the break from reality. I know you have to be afraid that happening. Make sure you mention it to your doctor. My sense is if it were related to lupus brain inflammation it would not go away on its own in a few days. But that is something only a doctor can tell you.

Glad you brought these things up. Others here may be able to be of more help. Certainly can understand your concern.

K

Hi Is brain involvement a really bad sign ? Xx

Happy43 profile image
Happy43 in reply to Buckley123

Hi Buckley123 I don't know, hopefully KayHimm will be able to answer your question. Best wishes 😊

Buckley123 profile image
Buckley123 in reply to Happy43

Thanks happy43 sorry to jump on your post xx

Happy43 profile image
Happy43 in reply to Buckley123

No problem, we all need answers! Hope you're ok x

Buckley123 profile image
Buckley123 in reply to Happy43

Thank you 🙏 still under investigation atm but I do have brain involvement as it stands on my scans xxx

Happy43 profile image
Happy43 in reply to Buckley123

Found this if it helps researchgate.net/publicatio.... Not sure if I've done it right, I'm not very tech savvy! If you type in uctd and brain involvement it comes up with a few examples. X

cctexan profile image
cctexan in reply to Happy43

Thanks

KayHimm profile image
KayHimm in reply to Buckley123

Not sure I can answer that question. You and I don’t exactly fit the picture of UCTD since we have mild CNS involvement, right? My neurologist says I am rare. Maybe you are rare too! I do think our MRIs and symptoms are mild as far as doctors are concerned. Serious lupus brain disease like cerebritis is rare and treating with aggressive medication in an intensive care unit, I think.

Would be a good question for your doctor during next appointment.

K

Thanks Kay I’m not sure I think the scarring sounds bad to me but can also be caused by migraines so who knows just have to wait till my next scan I guess xx

KayHimm profile image
KayHimm in reply to Buckley123

Yes, following the MRI is important. You might want to ask the doctor what he thinks the cause is. It isn’t always easy to tell.

Buckley123 profile image
Buckley123 in reply to KayHimm

They are not sure first it was ms and then apparently In the wrong area of the brain to pass for ms so not sure they where sure it was lupus but my bloods where negative xx

KayHimm profile image
KayHimm in reply to Buckley123

You are giving them a hard time! This is way too complicated for most doctors, let alone patients, to grasp. But it sounds like you have a good team who has seen everything and will watch you very closely. How often they repeat the MRI may depend on the results. My doctor says the best result is no change.

The MS/lupus dilemma is not uncommon. And with your negative tests, you are not making it easy. They may be presenting you on teaching rounds soon! Academic medical centers tend to see very complicated cases. I know you don’t want to be one!

K

Hi there

I was diagnosed with UCTD in 2003 and was put on Hydroxychloroquine and I had a steroid injection roughly every 9-10 months for the occasional blip. For 14 years I was fine, and then I developed Rheumatoid Arthritis. I was given methotrexate which I was taken off within 2 weeks as it made me so ill, then Azothiprine which did nothing and then Lefludomide, which also didn't really help. I was on and off steroids for about 18 months. Then I changed consultants and my new consultant is brilliant. She has put me on an infusion every 6 months of Rituximab. I call it my miracle drug because 24 hours after the infusion I am well again and have my life back. It roughly lasts about 6 months, although my last one lasted 9 months before I needed to have another one.

Don't despair, not everyone develops or progresses to another autoimmune disease and certainly not to 3, 4 or 5 of them. As I say I have had this since 2003 and have only developed RA and nothing else.

Live your life as you are, not as you think you might be, you may just stay with the UCTD - I only hope that you do. Good Luck.

Happy43 profile image
Happy43 in reply to Bakbre

Hi Bakbre and thank you for sharing your journey. Your advice about learning to live as you are is very true. No point worrying about what ifs and when, it takes up too much precious energy. I hope you continue to feel well 😊

Um im confused. What’s the difference between UCTD and MCTD?

misty14 profile image
misty14 in reply to cctexan

Hi cctexan

There's a specific antibody you have to have for a diagnosis of MCTD. UCTD is less clear cut and is a mix of RA , lupus and scleroderma symptoms but can over time develop into one illness. This is why these illnesses should be monitored as they can change. Hope that's helpful. X

cctexan profile image
cctexan in reply to misty14

Yeah I went and pulled my blood works over last 5 years and I wandered into uctd when I have MCTD cus of the antibody sorry

Hi happy

Welcome to the UCTD club. You've seen in the response to your post how many of us there are on here who can advise and give own experiences. It's a confusing area!. I've been UCTD diagnosed now for 32 years which is unusual as it can change into one illness over time. This is why it must be monitored by Rheumy dept's for new symptoms etc. Hope you have a good Rheumy consultant. I've been on the DMARDS over the years and at the moment it's being treated with Hydroxy and daily steroids!. I have developed other immune illnesses because they do say that once you have one you can develop others. I've

got colitis which is more unusual as it's usually IBS you can have. I may be developing RA so being closely monitored for it but my UCTD has stayed a fairly mild illness!. We're all very different so please don't think you'll automatically get what I have and yours could stay UCTD for a long time like me and not really progress!. I do hope it does. Anything you want to ask please do. Glad to help. Take care.X

Happy43 profile image
Happy43 in reply to misty14

Hi misty14 thanks for your reply. It's so nice to hear from everyone on here, it really helps. I'm glad your UCTD has stayed fairly mild and that you are being monitored. I hope mine doesn't develop but one thing I have learned is to try not to worry as this fuels anxiety. Best wishes 😊

misty14 profile image
misty14 in reply to Happy43

Good philosophy happy, I've learnt over the years not to worry about something that may never happen!. We are all different even with the same illnesses. I do hope yours stays mild and glad this forum is helpful. All the best and keep us posted. Xx

I have had UCTD for about a couple of years. It came with a bunch of other stuff and so it wasn't really discussed at the hospital. I had symptoms which were put down to "the underlying condition" so it was all a bit fuzzy until the turn of this year. I feel as if I have been given a list of things I haven't got rather than an explanation of what it is. That said I have no complaints about the way I have been treated.

The worse thing for me is waking up tired. The most tired I feel is when I wake up! Ridiculous! Who ordered that? Pain wise I have good and bad days, on the bad days I just concentrate on a good day coming along soon. I find that getting involved with my hobbies help, takes my mind off to a happy place.

I'm new here, so off to catch up on the rest of this thread.

I can identify with the waking up tired feeling. Sometimes it lifts by late morning and sometimes it persists until the evening. It has not been long since my diagnosis of borderline connective to be tissue disease (ANA 640 speckled and other signs of inflammation in bloods but no specific antibodies to a particular condition). Training my mind to find a happy place is a struggle at the moment and your positive attitude has inspired me.

Pleased to have inspired you. My inspiration comes from my kids and grand kids, who are dealing with bigger stuff than me. Right little super troopers!

You may also like...