Hello. New to Group

[reddogger]

Hi joined because Lupus is as close to what I have that makes sense. I have been diagnosed with Mixed Connective Tissue Disease, Interstitial Lung Disease and Antiphospholipid Syndrome. As MCTD is rare I cant find a group for that specifically but since i can have many of the same symptoms as someone with Lupus I might be able to get some helpful information.

[baba]

See this group re Antiphospholipid Syndrome.

healthunlocked.com/hughes-s...

[Maureenpearl]

Hi reddogger,

I was diagnosed with MCTD in 2006 and Pulmonary Fibrosis 2007

I have always just say Lupus and so does the doctors and it's also easier to explain to everyone.

About every six months I see a Rheumatologist along with a Pulmonologist together in one clinic. I also see my Rheumatologist every four months.

The treatment i have had in the past have not been beneficial, at present I've been having Rituximab infusion to try and stop the inflammation that is causing the damage to my lungs. I also use ambulatory oxygen since 2013.

Hope this is of some help.

God bless

Maureen xx

[LottieLou96]

Heya Reddogger,

Welcome to the group, were a good bunch. There's definitely peeps on this group with MCTD, ILD and APS. I have had a bunch of diagnoses over the years, each important, but much of which I for simplicity sake just call lupus. Unfortunately for many it's foreign for many medical professionals, but to this group, your symptoms and feelings are often relatable and hopefully you find help and comfort here.

Feel free to dm any of us if you ever need a chat.

Blessings

Lottie

[reddogger in reply to LottieLou96]

There have been several folks who have said they use Lupus as a sub for MCTD. Thats an interesting idea. Never thought of that.

[Pinky1go]

I have a diagnosis of MCTD , probable Lupus and Sjorgens. I was told by the specialist nurse that mctd is cheaper for travel insurance than Lupus, so am happy to stick with that. But for friends and people I usually say I have Lupus, as it is heard of more than the others.

[Joyalinc]

Honestly MCTD is not as rare as the internet would lead you to believe. Many of us who struggled for years to get a solid lupus diagnosis were classified as having MCTD. It’s really just a blanket term rheumatologists use when a patient has the symptoms of SLE but has not yet met the full criteria for a lupus diagnosis. It took me almost 15 years to get an official lupus (SLE) diagnosis from Duke which is a world renowned teaching hospital in the US. I was diagnosed with MCTD in 1998-2011. Then in 2011 I developed pericarditis & that was the final criteria needed to give me a formal SLE diagnosis. In more recent years I have been been diagnosed with rheumatoid arthritis, Hashimotos, Antiphospholipid Syndrome & a few other weird conditions I can’t remember at the moment in addition to lupus. It is very common for a person who has one autoimmune disease to have another or even a few more. Most likely your doctor is just waiting to see what happens & when you might develop at least 7 out of the 11 criteria necessary for a lupus diagnosis. Are you being treated with anything yet? Hang in there, stay persistent in pursuing answers & never give up! Good luck!

[reddogger]

Joyalinc,

I have never heard that rheumatologists use the term MCTD when a patient has the symptoms of SLE but has not yet met the full criteria for a lupus diagnosis. However, since I was diagnosed with MCTD in 2021, I have not been around this disease very long and my understanding of lupus is not very good. Here is my story for comparison.

I was diagnosed at UCLA Medical Center in Los Angeles. The criteria for my diagnosis were the following:

High level of U1 RNP antibodies

Raynaud phenomenon

Muscle weakness

Interstitial lung disease

Esophageal dysmotility

Lack of SS-A/Ro, SS-B/La, Sm,Scl 70 and Jo Antibodies (IgG antibodies)

Although the diagnosis was at first confusing to me - after reading everything I could tolerate on google scholar about MCTD I got the feeling that MCTD is considered a very separate disease from Lupus but that it has the potential to have symptoms that overlap that of Lupus. So the clinical overlaps but there is a clearer pattern of antibodies, including the lack of certain antibodies, that can be added to the symptomatic evidence differentiating the two.

It seems reasonable to me that there are many people with MCTD that are misdiagnosed with Lupus and other connective tissue diseases AND that there are people with Lupus that are misdiagnosed with MCTD. I would assume this would be the case especially if antibody testing was not done and only clinical criteria were used.

What I was stunned to know was that because MCTD is more rare than Lupus that many times MCTD is treated with drugs that are for Lupus . Im going to guess that there is more money to study Lupus than MCTD because of the increase number of individuals who have it.

So that is what I have come to know about the difference between the two. Although it was a big bummer in getting the diagnosis I learned a lot about an area that I would have otherwise never looked at and that was pretty darn cool :-).

[LottieLou96 in reply to reddogger]

Heya there again,

That was a good summary of how to put it. Back in the day I did some research papers looking into a number of autoimmune diseases, looking at genetic predisposition and the autoantibody profiles across the spectrum of AIs including that of MCTD due to its overlap between primarily lupus, myositis, and systemic sclerosis.

MCTD is sometimes mistaken for UCTD when as you say it is an AI in its own right. But rightly so, over the years many of us find that our symptoms might change or develop to appear like something different than before. And many also get diagnosed with a number of AIs but is that the most accurate diagnosis for some, possibly not. For one thing everyone's AI experience differs, there is a wide range, and more AIs being discovered as the years go by, whether that be through research advancement or not considering the genetic and environmental factors that influence ones penetrance of disease symptoms.

I, maybe hastily, pressed for a diagnosis of SLE in part to allow acknowledgement and treatment. Initially, and still, have a diagnosis of familial SCLE as well as something called 'Twinges' a really rubbish AI name, that.my rheumatologist created, which caused moderate chaos for years. Many have some overlapping symptoms getting back on point. But with MCTD the criteria is quite clear, and you sound like you fit in with the criteria well.

Hopefully you get the treatment you need and deserve.

Lottie

[reddogger in reply to LottieLou96]

I have been getting pretty good treatment. Right now on 400 mg of Hydroxychloroquine and that has helped with the muddled thinking, crushing fatigue, and some of my inflammation markers are now down to normal after being sky high. What hasn't changed is the Raynaud's, horrible joint stiffness, joint pain and muscle weakness. My partner calls the Hydrochloroquine the "H Bomb" as it has done such a great job of pushing the numbers down. I have to laugh at that...

[MusicalFurbaby]

Welcome reddogger! You are in good company here, many of us have autoimmune stuff that is undiagnosed or uncertain or a mixture of several autoimmune things. I have lupus along with antiphospholipid syndrome, it’s all pretty crazy. Feel free to post here as often as you like, ask questions, and reach out for support. 💙