MCTD & UCTD: Hi there Can anyone tell me the... - LUPUS UK

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MCTD & UCTD

Bakbre profile image
25 Replies

Hi there

Can anyone tell me the difference between MCTD and UCTD?

I have UCTD but cannot seem to find what MCTD is or what the first initial (M) stands for.

Thank you in hope

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Bakbre profile image
Bakbre
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25 Replies
Dion50 profile image
Dion50

Hi maybe mixed connective tissue disease I have it it's says what it is all your tissues can be affected like all over your body I don't know what the other is sorry x

Bakbre profile image
Bakbre in reply toDion50

Hi Dion50

I have UCTD, the U standing for Undifferentiated which means it doesn’t differentiate between anywhere in your body and therefore can attack anywhere in your body. That to me seems to be exactly like MCTD and there doesn’t seem to be any difference! At least now though I know what the M stands for.

Thank you for replying.

Take care

PMRpro profile image
PMRpro

"Undifferentiated Connective Tissue Disease vs. Mixed Connective Tissue Disease

Although these conditions sound similar, they are different. People with UCTD have some symptoms of various connective diseases, like arthritis or muscle pain, and positive ANA antibodies. But they don’t meet the criteria to make an official diagnosis.

On the other hand, mixed connective tissue disease (MCTD) is a mixture or overlap of three different autoimmune rheumatic diseases: lupus, scleroderma, and myositis.

People with MCTD have symptoms and features of all three conditions, either at the same time or over a period of time. For example, they might have Raynaud’s, muscle aches, fatigue, and puffy fingers. Over time, they can develop swollen, arthritic joints and inflammation of the heart and lungs. Patients not only have positive ANAs, but another type of antibody called RNP (nuclear ribonucleoprotein), which about half of all lupus patients have also."

creakyjoints.org/living-wit....

If you read the article from the beginning it will give you a good understanding of what they mean. The terms aren't "we don't know" diagnoses, they are to take account of the fact that autoimmune disease is often not clear cut in its diagnosis or in how it affects us. In the past, diagnoses were made on the picture of the signs and symptoms that could be seen and so you might have a load of patients told they had lupus because that was the most obvious thing. But as medical science and imaging has developed, other things can be identified that mean that underneath and out of sight some of those patients have one version, some seem to have another and yet others another.

Does that help?

Bakbre profile image
Bakbre in reply toPMRpro

Thank you, I think! It is all very confusing but your answer has helped a great deal. Your explanation is more than I expected and I can even understand it! So many doctors seem to talk in jargon I don’t understand and and don’t have the time (or the inclination) to explain. I have been made to believe I must be very dense to even ask these questions!

Like everyone else with auto immune diseases, it takes a lot of time, patience and as we all know suffering to get to any kind of diagnosis. You need to have a great deal of stamina to go the distance, no wonder it is confusing!

I was told that I had Lupus in 2003 and had positive ANAs and was treated with various medications depending on which Consultant I saw. I then moved home and was transferred to another hospital which didn’t have a permanent Rheumatologist but relied on locums. This meant that I actually had 7 different ‘Consultants’ in 5 years. I was in a lot of pain during this time and put on so many different medications I didn’t know whether I was coming or going!

Since then I have moved home into a different County altogether and I took the opportunity to change my Consultant. I did my research and found an expert in UTCD & MCTD and luckily I was taken on his panel. I can honestly say it was the best thing I could have done. He has stated that I don’t have Lupus at all but actually I have UTCD.

He has changed my medication completely which has made a lot of difference, I can honestly say I am a lot happier and I have a lot of confidence in him.

I also have Rheumatoid Arthritis, Small Fibre Neuropathy, Bronchiatasis & now have just been diagnosed with Ulcerated Colitis.

Once again thank you, I am really grateful for your reply.

Take care & stay well.

PMRpro profile image
PMRpro in reply toBakbre

My work most of my life - professionally too - has been turning complex jargon into people-speak, Unfortunately the medics learn all their stuff as medical speak and forget their patients didn't. Doesn't make the patients ignorant but it would be polite to speak the same language as they do. Doctors in the UK wouldn't take kindly to me speaking German to them would they?

And to be fair - translation is a difficult gift to acquire but they could try harder!!!!

Halfwayuphill profile image
Halfwayuphill

hi Barkbre

I have UCTD. MCTD stands for Mixed Connective Tissue Disease and is not a term some Rheumatologist's like to use. Now a days many prefer to use Overlap. Now the complicated bit- the differences are held to be UCTD means you have signs of two or more connective tissue diseases (lupus, scleroderma, sjrogens etc) but not enough for a diagnosis of any of these. Overlap means you have a definite diagnosis for at least two.

To further complicate the issue there is a specific antibody related to MCTD/UCTD- RNP. It is non disease specific but used to be the marker for MCTD. Some rheumatologists seem to believe the RNP antibody was more likely to make a diagnosis of Overlap to mctd. I had the antibody for years and was diagnosed as having RNP positive UCTD. It basically was told to me I needed follow up every year to make sure it wasn’t evolving into a specific disease. I have been checked every six months and now every year for over 20 years! I am now RNP negative.

UCTD is a disease in its own right and has had a big effect on my life although fortunately not life threatening. It’s frustrating sometimes considering this you are diagnosed with something that sounds so vague but on the other hand I’ve had excellent care. My gastro and bladder problems have worsened in recent years but for this I’m treated as if I have Scleroderma and I may be moving towards a diagnosis of this. A percentage of UCTD patients progress quickly to a definite serious disease, many stay the same and an equal percentage go on to develop a definite diagnosis, usually limited Systemic Sclerosis (Sclerderma).

I hope this makes sense and helps!

Bakbre profile image
Bakbre in reply toHalfwayuphill

It does and thank you very much!

KayHimm profile image
KayHimm in reply toHalfwayuphill

Great summary. Life-threatening or not symptoms, you say, are treated seriously. Like you, I have always been followed closely and had provided treatment.

Halfwayuphill profile image
Halfwayuphill

I mean an equal proportion develop a full connective tissue after some years in the last sentence. It’s so complicated to explain!

Star13 profile image
Star13

Here is a good explanation of the two:

wsh.nhs.uk/CMS-Documents/Pa...

Bakbre profile image
Bakbre in reply toStar13

thank you!

CJT37 profile image
CJT37 in reply toStar13

this was a really helpful article thank you

IsleofWight1 profile image
IsleofWight1 in reply toStar13

That’s very helpful, thanks.

Seems be a topic of interest at the moment.🙄🫠

A link to a UCTD post from last week with has a link to a paper on the 'Lupus Spectrum' and a couple of video clips.

healthunlocked.com/lupusuk/...

Bakbre profile image
Bakbre in reply toStriatedCaracara

thank you!

KayHimm profile image
KayHimm in reply toStriatedCaracara

I am not sure but think lupus spectrum disorder will apply to those with UCTD who are lupus-like. I once read that most UCTD patients progress into scleroderma. On the other hand, Dr. Michael Lockshin, a recently American lupus expert, said in his experience most patients evolve to a lupus diagnosis.

Yes, that does sound more confusing. But I think the lupus spectrum diagnosis would include incomplete lupus, lupus, APS, lupus with APS. Something like that.

We will know soon

KayHimm profile image
KayHimm in reply toStriatedCaracara

and cutaneous lupus

It would be interesting to know how diagnosis is changing at the moment because more posting on subject.

Here is a link to a MCTD post from last week. Some interesting discussions on definitions.

healthunlocked.com/lupusuk/...

Suvi8901 profile image
Suvi8901

Another paper from Medicine.net on MCTD vs UCTD::

medicinenet.com/mctd_vs_uct...

Medical Author: William C. Shiel Jr., MD, FACP, FACR

Medical Editor: Melissa Conrad Stöppler, MD

Djlr profile image
Djlr

Great Definition & Detailing of UCTD

creakyjoints.org/living-wit...

MCTD & UCTD:

medicinenet.com/mctd_vs_uct...

I hope these sites help In distinguishing the differences you need in these 2 Diseases that can seem hard to differentiate.

Bakbre profile image
Bakbre in reply toDjlr

thank you

michaellasmith profile image
michaellasmithAdministrator

Good Afternoon Bakbre,

I have attached below some links that you might find useful:

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/wp-content/u...

Warmest regards,

Michaella 😊

Bakbre profile image
Bakbre in reply tomichaellasmith

That's really nice of you, thank you

hbanana23 profile image
hbanana23

It's been interesting reading your post and the replies as I was diagnosed with UCTD in 2016 but the NHS kicked me out earlier this year. I went to see a private rheumatologist a few months ago and he really didn't like the terms UCTD and MCTD - he told me they are outdated. He told me about overlap too and he actually said that he believes it's very close to lupus. I've been using the term "lupus" to family and friends for years as I found UCTD harder to explain so it made me feel better that he said that.

StriatedCaracara profile image
StriatedCaracara

Hi hbanana23

I use the term 'Lupus' too with family and friends as it is clear even to them I have Lupus symptoms, and otherwise they just can't relate to anything.

With the increased use of Classification criteria, dependent on just a subset of possible blood markers that could go amiss, to also diagnose, sanity was lost.

Basically they should not be using the word 'Undifferentiated' when they don't know all the markers.

The word 'Undefined' also beginning with a 'U' might help indicate the science has not got to the state to allow 'absolute' stance in as far as it not being a particular CTD.

If they went back to not needing positive bloods, and used more than 4 of 11, it would be fairer on us patients..

But guess research drives things in some departments, so unless we go private few are interested.

Ridiculous...

We probably hold lots of answers..but they are after quick financial gains.

This is my gut feel.

Glad discussion on this nice post was started again today KayHimm 💯

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