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  • Mctd

    Hi all, went to see specialist yesterday and he was wrightin MCTD on everythin,would someone please tell me what this is? I have looked on the net, and extremely confused, as it comes up with a few diseases, does this mean i have one of them? Before he kept wrighting possible Lupus but now he has just put MCTD! On plus side,since having an injection of steroids felt so much better and doesn't want to see me for 6months,really pleased about this as i have been seeing him every month and had injections every time i go! X x x x

  • #2
    Hi,
    I think it's mixed connective tissue disease.
    Please if i have it wrong forgive me. And let me know.
    http://www.mayoclinic.com/health/search/search
    Hope this site helps.
    Sand.

    Comment


    • #3
      Hello there

      Yes, it is Mixed Connective Tissue Disease. It means that your bloods and symptoms are pointing towards more than one connective tissue disease. A quite typical mix is lupus, scleroderma and polymyositis. It is not however because you have that showing in your blood that you will necessarily develop symptoms of all those diseases. Treatment wise it makes little or no difference to lupus.

      I also, officially, have an MCTD diagnosis as do a few other members here.

      Here is some info on MCTD http://www.medicinenet.com/mixed_con...ge2.htm#Whatis

      Have you been put on any baseline meds in addition to the steroids? You would usually be put on an anti-malarial called plaquenil which, although it takes a long time to start working, is a very good med. 6 months does seem a long time for someone newly diagnosed and I'd want to be sure you are being correctly followed up.

      Bye for now and hugs :hug:

      Katharine

      Comment


      • #4
        Thank u so much for replying, so basicly they have diagnosed me with this as they are not sure which of the disease u stated it could be? sorry for the questions its just alot to take in. they put me on plaquenil but it didnt suit me, made me really poorly so i have had steriods and injections in my ligaments and joints, which has helped but how long for?!! how long have u had mctd? will i ever be diagnosed with just one? thanks again! x x x x x x

        Comment


        • #5
          Hi again,

          It's all so confusing isn't it :hug:

          OK, if they didn't know what you had but knew it was an auto-immune connective tissue disease then the diagnosis would be UCTD (Undifferentiated CTD) rather than MCTD - this link explains the difference http://www.medicinenet.com/script/ma...ticlekey=16955

          There are drugs other than plaquenil which can treat you and you will eventually need to look for more than just injections into joints as, long-term, they can be quite harmful.

          From the sound of it, I would try and seek a second opinion as I would rather see you on disease modifying drugs than intermittent steroid shots which will not control the disease itself long-term.

          If you truly have MCTD as opposed to UCTD then no, you will not be diagnosed with "just" one but honestly, it won't make a difference to either your life or your treatment. When explaining to others you just pick the one that seem the most pertinent. I just say to people I have lupus and leave it at that; MCTD is far too much of a mouthful :lol:

          You will need to have regular check-ups, regular blood work done and regular urine tests as well. MCTD is not the end of the world but must be monitored properly. As with lupus or any other auto-immune disease, people can be affected very differently with the majority having only very mild symptoms once on correct treatment.

          Katharine

          Comment


          • #6
            HIya.. I have MCTD, and my 'mix' is scleroderma, lupus, polymyosis.... as Katherine said it is a mixture of diseases and they can either stay the same, progress down one route or another ie, lupus or scleroderma and sometimes go into remission. The treatment is the same as for lupus, as are most of the symptoms. I too would not be happy about having shots into joints as that is tackling the symptoms but not calming down the disease activity in your body. If plaq didn't suit you there are lots of meds out there to try.... I do hope you get some relief soon... take care,
            Claire X

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            • #7
              Hi
              I too am diagnosed with MCTD it can be frustrating I know. My Rheumy says it is my GP says he wants more evidence. I go with my Rheumy everytime he is so kind and helpful but it can be confusing. So thank you Katherine for the link I haven't seen it before and it was most helpful.

              Trindy

              Comment


              • #8
                Hello, I also have MCTD but was dx with Lupus first then Sjogrens and now MCTD with possibilities of internal Scleroderma and I have undiagnosed muscle issues, my doc was pretty sure I had mctd even before I tested positive for the rnp antibody. I guess it unfolds a little differently for everyone but as others have said it is a mix and overlap of different autoimmune diseases and while some of us may have similar symptoms they can also vary quite a bit as to which symptoms and which disease become apparent. For some mctd can stay a wide mix of symptoms crossing different diseases and for others over time the individual diseases can become pronounced, enough to have their own dx. Either way treatment of the individual symptoms is the most important and continual followup with your doc and lab work is important because things tend to evolve and change over time.

                Hope this helps and you are doing ok.

                Comment


                • #9
                  Hi Brandy *waving*

                  Yep, I've got that diagnosis too. I went from UCTD to possible scleroderma, to mild lupus, to MCTD. I think it really depends on how conservative your rheumatologist is on how they make their diagnosis *shrugging shoulders* I do think that there is a certain antibody that does determine this diagnosis though, when I started going to my current rhuemy it was the U1-RNP antibody which told him, no you don't have lupus you have this.... I look at us being the "mixers" in the world of autoimmune diseases, you know... the life of the party... LOLOLOLOL. and Like Katherine, when people ask, I just say I have lupus....

                  Hope you are having a pain free day!

                  Comment


                  • #10
                    I have mctd too, and actually some days my rheumy callls it uctd. It is scary not knowing what it is, but I have had it for a few years now, and I am still alive and enjoying life, though medical crap is threatening to take over. I am working hard to stay strong for my family, and to do whatever God has in store for me each day. Today, though, is a day where He wants me to nap, apparantly, lol. I woke up with good intentions, sigh. I am going to get lupus dx labs done hopefully this afternoon, so we'll find out what they say. Mctd is the mixture of the symptoms of lupus, scleroderma, and polymyositis. Mine is"mostly lupus" according to my rheumy. She is always expecting it to develop into full lupus. I have just started cellcept now that it is a generic and I can afford it, and it is helping quite a bit. I have also done remicade, rituxan, orencia, mtx. Anything you try will be "off label" My rheumy is good about trying new ideas for it, and until I brought up that cellcept was now generic she was out of ideas for me. My pain and fatigue are overwhelming most days, and I had kidney and adreanal gland failure in Oct. Nov, and again in Feb. I also have fatty liver disease and type 2 diabetes that is not controlled very well, complicating things, plus fibromyalgia, all muddying the waters of what is causing what. Now they are adding barrett's esophogas and gastroparesis to the possible dx's. BUT!!!! I have great kids, great husband, and a great God watching over me, a roof over my head, medical insurance, flowers in my garden, and two wonderful kitties, yard sales to go to, art to make when I have the energy. Writing this has been good for me today. I hope it encourages you, hugs, Jen

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