Hello ,Has anyone noticed that there now appears to be no reference to UCTD on the Lupus uk website. Spoke to someone there today who had heard of UCTD but didn't know what it was? And only talked about MCTD? Is UCTD still a recognised lupus connected diagnosis?
UCTD?: Hello ,Has anyone noticed that there now... - LUPUS UK
UCTD?
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Narni21
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I don’t know anything about the new LUK website but here’s a link to a page about UCTD on the SRUK charity website, which I’ve always found to be an excellent source of reliable information: sruk.co.uk/scleroderma/defi...
As far as I’m aware UCTD is the undifferentiated overlap of Rheumatoid Arthritis/ RA, Lupus and Myositis, whereas MCTD is regarded by doctors as a disease in its own right with a distinct antibody of its own, U1 RNP. MCTD tends towards Systemic Sclerosis symptoms, overlapping with Lupus and Myositis.
I’m not quite sure why people diagnosed with UCTD tend to get less support from the relevant charities - but I’ve noticed that my UCTD friends tend to gravitate more to one charity community or another depending on their most dominant symptoms. The NRAS might possibly have more information on their website or Versus Arthritis? My own main condition is Systemic Sclerosis so I tend to post on SRUK but I also have Sjogren’s and hypothyroidism and was originally diagnosed with RA many years ago, so know a fair spread of people with all of these overlaps now as well as UCTD and MCTD.
From the SR perspective yes, but for me treatment with antimalarials has helped immensely. This is not mentioned probably because people using SRUK relate to SR not SLE.
Agree wuth Narni that better, more comprehensive and helpful UCTD information is needed.
UCTD in my mind is Undefined Connective Tissue Disorder rather than Undifferentiated Connective Tissue Disorder.
I believe it is a limitation in the currently used tests that fails to get us a diagnosis on a wider spectrum of lupus-related disorders with different sub-types.
Differentiation only referring to what gets ticked on a limited classification criteria based currently on incomplete science.
To correct you - abbreviation for Systemic Sclerosis/ Scleroderma is SSc rather than SR. However Hydroxy is often used initially - particularly if the person has mild limited SSc. It’s a much rarer disease than Lupus and has a worse overall prognosis but point is that I have as many friends diagnosed with UCTD who relate most to Raynauds and SSc as I have friends with an RA or Lupus-like type. And for most friends with Sjogren’s Hydroxy is as much a go -to starting DMARD as it is for Lupus. I was prescribed it along with methotrexate for RA initially.
So UCTD really does seem to sit equally between these Rheumy charities rather than mostly under the Lupus umbrella. Also worth considering that the SSc centre for excellence at Royal Free don’t seem to like the MCTD diagnosis much so often diagnose people with UCTD - even if they carry the U1 RNP antibody. Once it moves towards MCTD they tend to only look for SSc or Myositis I’m told. So this may be why they have a page about it on their website - particularly because they also serve the common Raynauds community so may have a broader reach and remit. Not saying that LUK and NRAS shouldn’t also cover UCTD on their websites of course but I don’t think they have a greater responsibility than SRUK nor should they be obliged to offer more online support than the others. There are very clear diagnostic features of each disease eg MRI/ ultrasound for RA, lip biopsy and ultrasound for Sjogren’s, nailfold capillary test for systemic sclerosis and Lupus. And those who do carry specific antibodies also tend to have a more severe outlook so a full gamut of autoantibodies needs running regularly alongside other tests just in case one finally shows up highly positive as it did for me.
I was in a bit of a hurry. Sorry, I abbreviated to SR. The charity does.
The page you linked to on UCTD does not mention hydroxychloroquine. That is why I mentioned it.
I wish hospitals would not diagnose patients with 'MCTD as UCTD' as the positive antibody does provide definition and interchanging definitions does not help many patients who do not fulfill immunological criteria.
In fact, the local rheumy I saw, when I asked about UCTD, said "even UCTD has a specific autoantibody" before saying in his letter, "UCTD was too difficult for them to diagnose". Basically, both statements I believe were used to prevent me being a patient locally. The statements were actually contradictory, as if there is a specific antibody (anti U1 RNP or anything similar), it is not too difficult to diagnose.
Strange really having no ubiquitous truth.. it is time for logic to prevail. 🤞🙏🕊
As well as the categories and mixtures you mention, I'm sure there are other groupings too and unknown areas. It is just not fully understood at the moment.
I belong to multiple HealthUnlocked Fora also. I find I learn more that way. I relate to Lupus, partly because of conversations with my rheumatologist and letters, and it would be helpful to sometimes feel more included.
I have never in all my 13+ years under rheumatology seen acronym SR for systemic sclerosis. It would be like me writing LS for Lupus. It’s always SSc on research and information including SRUK. Maybe you’re confusing it for secondary Raynauds but as I have SSc and you were replying to my comment I’d be grateful if we could stick to correct acronyms.
My seronegative CTD friend has just seen her Rheumy’s latest letter and it specifies MCTD with seronegative arthritis because, although her skin symptoms are most Lupus-like, her Raynauds is thought too severe (digital ulcers) to relate to Lupus and her inflammatory arthritis is thought too non erosive to be RA. She doesn’t have any organ involvement which would point to SSc or SLE even after many years. She is pleased with this MCTD label so I guess it’s all about how the patient can relate or not. She’s on MMF and MTX injections along with hydroxy which she’s been on for many years but wasn’t enough.
The R is for Raynaulds. SR UK used it that way??I was in a hurry. BIG BIG sorry
That’s fine. I’m just touchy because it took so many years to get correctly diagnosed and treated. SRUK has lots of members who only have primary Raynauds of course. But also Scleroderma is a very broad umbrella and SSc is the most heterogeneous of all CTDs hence the length of time it can take to diagnose. I do agree that all rheumatic autoimmune disease charities should have clear reference to UCTD because it’s pretty common and can be fairly awful to live with.
I think all the related charities could provide info. The post is about someone not finding info on one site at the moment. Great that other charities provide info.
On the Lupus front Dr Thomas seems be doing a good job 👏
Thanks CSLO for sharing. I'm enjoying reading under all the sections, and think it is brilliant
That's very interesting reading. Is Dr Thomas a globally recognised figure?
I'm in the UK, and after watching various Lupus Foundation of America videos he did, I made out in my head that he was my rheumy after the bad experience I had at local NHS hospital. I needed to find someone to listen to, who could give me advice. I learnt about the importance of hydroxychloroquine from his videos.
I then fortunately managed to get my diagnosis elsewhere in the UK (but needed to go private). Another brilliant rheumatologist. Part of this brilliance I believe comes from the ability to be honest, as well as being extremely caring and being intelligent. Practice becomes intuitive because so many patient hours have been committed to, and they are the real leaders.
So much in life depends on the right people being there.
Anyway, I have a second-hand copy of The Lupus Encyclopedia and am always referring to it. It gives so much guidance and tips. I never knew Dr. Thomas put so much online, though, about UCTD. He is a star..
Honest,caring, intelligent, That's how it should always be but sadly not always the case.
They get rewarded for towing the line. Maybe the wrong people manage standards. Only some have the ability to question. It probably threatens carers.
Whistle blowing needs to be encouraged so our NHS gets better.
I'm very glad Dr Thomas made this video.
👍
This video he did for 'Kaleidoscope Fighting Lupus'. I find their videos good.
He speaks with passion and calls into question tests that are relied on at the moment.This goes to the core of what UCTDers face.
Hopefully one day there will be no such thing as UCTD, as testing will have moved on and new tests might give more evidence of what causes our aweful symptoms, no matter which UCTD camp we fall into.
UCTD isn’t lupus disease but it can have features of lupus. The misconception is because it used to be called “latent lupus” or “prelupus” - but many can also be pre-scleroderma or others or any overlap there of. I’m diagnosed UCTD but have lupus-like symptoms but scleroderma antibodies as example. I’m UCTD bubble because my criteria doesn’t fit only one single diagnostic criteria. They use a point system and in my case I’m 6 of 9 for scleroderma and 8 of 10 for lupus sle. Same treatment but just now they try to keep it from differentiating or progressing. MCTD on the other hand has its own antibodies and own disease course and is an overlap of specific symptoms. As for the website and UCTD I have no idea but I do know UCTD is also present in many people already with other specific disease diagnosis because the my may have features but not all from other diseases at the same time. 🙏
I strongly relate to SLE and believe in another era I would have been diagnosed with SLE. As the science improves hopefully the concept of the Lupus spectrum may come into use more.
I understand that people may in the end get diagnosed with different differentiated disorders but this is no excuse not to include UCTD patients with Lupus symptoms.
Maybe some hospitals only wanting to see patients who qualify for research then has a domino effect on our wider inclusion.
It is aweful also that our symptoms can be described as mild or early, when some people seen routinely have positive blood results but very few symptoms.
There just seems to be a mass of politics and different interests. I needed to go private for my UCTD diagnosis as local NHS consultant said UCTD was too difficult to diagnose. He also said I did not have systemic autoimmune disease like lupus or sjogrens as I walked in the room. This decision could have only been based on bloods as we had not discussed symptoms and I had not been examined at this point.
Good morning Narni.
I think it's a term that has evolved over time and probably relates to the amount of understanding around the conditions and how that knowledge has evolved.
Prof D'Cruz referred to mine as Autoimmune rheumatic disorder with features of ........ and my subsequent rheumy has followed suit but has also called it undifferentiated, UCTD. I think it's all the same thing just different terminology.
My understanding is that when it's undifferentiated it can go a number of ways. About a third stay where they are, managing the condition though it can worsen or improve. About a third actually differentiate into whichever disease or combination and then that often appears in the bloods and the last third find the disease can just burn itself out. Fingers crossed for the last third!!
This link to the Lupus Encyclopaedia may be useful.
As someone mentioned, treatment is mostly symptom based as it is with most other CTDs. My meds are the same as those for SLE and any other CTD and my care is certainly taken just as seriously. My GP practice handles me as a Lupus/Dermatomyositis patient.
Hope the link is helpful.
All the best.
CSLO -
The description of undifferentiated connective tissue (or undifferentiated autoimmune syndrome 😵) that you posted is so good. He has everything in there, even accounting for our name change.
His explanation of how patients evolve is the best I have read.
Every person going through the diagnostic process who doesn’t not have a specific diagnosis would feel such relief to have read this.
Thank you!
Kay
Kay, I believe knowledge is key, well it certainly is for me. I ask a lot of questions, many many questions! 🙄I feel better able to manage things when I can recognise what is going on.
I agree, the article is exceptionally useful especially for those folk in the early stages of these conditions. Too many folk are left confused and foundering and decent care is often a lottery. I can fully appreciate the desperate need for a diagnosis, I remember needing answers, especially in the early years. However, many simply don't realise that UCTD is a recognised condition in its own right and can require a comparable treatment path to the other autoimmune rheumatic disorders. I'd far rather stay with this label than differentiate. I can then feel optimistic that I may well fall into the third in which the symptoms can burn out.
I'm glad you found it useful.
All good wishes.
Absolutely! In fact, I remember when I was young my rheumatologist warned me about sun exposure. He said, « These things aren’t static. Don’t make me tell you you have lupus. » Even back then when the « undifferentiated » syndrome was being described by that one rheumatologist, mine took the time to tell me I would likely have a mild course.
There was no literature for me to access for years - none for patients. And no internet to find out how common it is.
I do think changing the name will be helpful. There is an international group of experts looking at clinical guidelines for diagnosing lupus that would reflect a spectrum from APS to undifferentiated to classifiable lupus. It would be a major undertaking.
It is interesting that at this point the number of people on the LupusUK who have been diagnosed with definite lupus is not that many. Most seem to be somewhere in the diagnostic process that is unclear, or diagnosed with UCTD, or still a « wait and watch. » The bar is very high for lupus now that the tests are better and newer tests have come along like the anti-cardiolipin. Forty years ago my blood went to a guy’s lab up the street who was studying that antibody along with a famous UK lupus specialist. 😂
My perspective is so different. I’m old and doing well despite some rough years and some scares. I feel fortunate to have many like yourself who share lupus symptoms and others.
Onward and upward. 🦓
Kay
Yes, I read somewhere they are moving away from undifferentiated connective tissue disease to undifferentiated autoimmune rheumatic disease. This reflects the shift from the umbrella term connective tissue diseases to autoimmune rheumatic diseases.
When I was being diagnosed my GP referred to collagen vascular disease. They like change our names. 😂
I have had your experience and am treated based on symptoms. The rheumatologist who described UCTD in the 1980s saw it as its own category with a milder progression. This was predicted with me but whenever things looked concerning such as possible pulmonary hypertension or protein in the urine, the « not definitive lupus » certainly was thrown out the window.
I agree with you also about the different expressions of UCTD - some of us more lupus-like and some less so. My rheumatologist has a short description for non-rheumatology physicians if you are interested. You can see the diagnostic process in action.
Your post was helpful in understanding how patients in real life are handled. There is no simple formula, right? I am not on Plaquenil but take steroid dose packs and have been sort of considered for IVIG. 🙃
Keep us posted.
Kay
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