lupus now mctd.

611 Views 7 Replies 6 Participants Last post by sushi, Sep 18, 2008

sushi

Discussion Starter · Sep 16, 2008

im so confused. 19 years ago i was diagnosed with lupus now the doctors are calling it mctd.

i read awful stuff on mctd the one thing that really scares me about it is that i can develop pulmonary hypertention.

im sorry my friends but this is taking me back into depression. i need your opinions on this.

im sorry if im being ignorant but this all just confuses me so much.:worried:

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Blue*Mist

· #2 · Sep 16, 2008

Hi Sushi,
I was diagnosed with MCTD last month.. I know very little about it and I agree that what you read is scary. All of the 'overlap stuff is so frightening.. I was petrified about the organ involvement. Though rheumy said pulm hypertension is possible, it is not the 'normal course' of the disease ... I had baseline chest CT, echocardiogram and pulmonary function tests so my rheumy knows where I'm at now. Perhaps the same can be done for you to know where you stand. Good Luck...

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LolaLola

· #3 · Sep 16, 2008

Hello Sushi,
I am sorry you feel depressed and scared. I wish I knew what to say to you.
I am sure others with MCTD will help you.
x Lola

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keebler

· #4 · Sep 17, 2008

(((Sushi)))

I just wanted to give you some hugs. Sorry I can't help you with your question.
Remember to take it one day at a time and no one can predict what will happen to our health.

Take care,
:rose:
Lyn

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sushi

Discussion Starter · #5 · Sep 17, 2008

now i am really confused, ? is connective tissue diseases diffrent from mixed connective tissue disease? i have never been more confused. very sorry.

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Joandublin

· #6 · Sep 17, 2008

Hi Sushi

Connected Tissue Disease is the generic name given to a variety of connective tissue diseases some of which are inherited and some of which are autoimmune. So it would be correct to say that Lupus, for example, is a connective tissue disease as is Sjogrens, Rheumatoid Arthritis etc.

Mixed Connective Tissue Disease is when there are definite features or overlaps between three of these conditions - Lupus, scleroderma, and polymyositis. Also a diagnostic criteria for MCTD would be the presence of RNP antibodies which I presume have shown up in your bloods?

MCTD can develop slowly which could explain your diagnosis of Lupus being changed at this stage.

Another term (and to make it even more confusing!) is UCTD (Undifferentiated Connective Tissue Disease. This is a term usually used for people who are showing signs of various CTD's but there are no specific markers for any particular one. Sometimes people with UCTD will never go on to develop specific markers and the course of their disease can be mild - others will go on to develop clearer markers and therefore a more specific diagnosis.

To make it even more confusing, some doctors use the term UCTD, CTD and MCTD a bit loosely. I think it would be a good idea to check with your doctor about the specific markers and disease activity you have at the moment so that you can at least be informed about it.

Hope this helps a bit
Luv n stuff
Joan:rose:

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Katharine

· #7 · Sep 17, 2008

Hello Sushi,

As I have at least one overlap with lupus my rheumy also sometimes refers to my disease as MCTD. She mainly does that on paper in reports but said to me that when giving info etc. (like to people in A&E) just to say lupus.

The outlook for MCTD is no worse than it is for lupus and there is no reason why you should suddenly develop different and more serious symptoms. I think you have been doing pretty well lately if I remember rightly and I would hope that it will continue that way.

The treatment is also the same. The only "difference" I have, if one can call it that, is that I also get physio to help with my polymyositis involvement. Docs will often "call" it something different to be "official" and correct. If you have symptoms of more than one disease then it is more correct to call it MCTD for them but it makes no difference to you.

Katharine

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sushi

Discussion Starter · #8 · Sep 18, 2008

thank you very much Katharine and Joan.

its all much clearer for me now. thats why i like to come on here with my

questions and concerns you guys explain it much better than the doctors.

in plain english

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