MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I am so glad I found this group.I never met anyone in my life who has got mctd and no one seems to understand what I am going through:( even my nurse friend.
I am a mum of two kids one is just under 2years old and one is 6years old. I always wanted to have girls but now i wish it were boys since there is bigger chance my girls get the disease. I feel guilty having them as my kids. I am 32 years old and have had fatigue for a long time and no gp or no physician found out why and symptoms got more severe with dry mouth when I was pregnant with my second one. I still didn't know what was going on.
It started with extreme dry mouth and after c section my RA started and fingers became like sausages. Raynauds also started all over fingers and toes. Then my gp did my ana and ena blood panel..found out I have so many antibodies that cause all sort of autoimmune disease.
My Rheumy's biggest concern is my neutrophil count since it's so low so every time I have fever I have to run into emergency room with hubby and two kids. This is so frustrating. My 6 years old daughter hates emergency room :(
My rheumy sent me to see a haematologist and she thought that my neutrophils so low due to blood cancer. So I had to do bone marrow but it came out to be just my immune system is attacking my white cells my bone marrow functions fine. I was so relieved.
I read an article that says people with mctd are 25% more than normal people to get pulmonary hypertension.. I had my second echocardiogram today. It seemed fine the sonographer said. But will find out more clearly at my next appointment.
Still need to do routine blood test every four weeks and sometimes every week if my white cell is too low. And taking methotrexate doesn't help with my white cell count. It helps so much with my arthritis that's only reason I am taking it.
Currently taking mtx,plaquenil.Plaquenil doesn't seem to work well but I still take it in order to prevent for the disease to slow down.my depression was going worse and I was put on antidepressants then it dropped my white cell counts more so I stopped it.. I don't know how to deal with this anxiety and depression. I really wanna see my girls getting married also wanna be there when they need me but I am not confident and this is really killing me.
My current conditions are
Sjogren, Raynauds, RA, Neutrophenia.. and I have lupus antibody as well.. so I have been diagnosed as mctd.
I am just curious if there is anyone in Australia having MCtd? If yes please leave me a reply.
Thanks for reading my post and sorry for some grammatical errors ( English is my second language) :)
Mary Ann
I can't remember exactly what I have and I havent got my blood test results with me now
But I was positive with anti sm, rnp, ccp, ssa, ssb as far as I remember. I was lucky as ds dna was negative also c3,c4 was in the good range too. What sort of antibodies do you have? I am curious about this too as everyone has different types of antibodies but is diagnosed as mctd. My first Rheumy said I had a lupus and my second Rheumy said it was mctd. My third Rheumy said it was mctd and my fourth the current one said it's MCTD. And my haematologist said I might have a blood cancer but it wasn't since my bone marrow was working normal. I am going to meet with my second Rheumy again who has 30years experience in researching lupus in two month time and ask him about the progress of my disease. Please share ur story too. I am curious about everyone else :)
Thank you :)
Mary Ann
Whatever that means white blood count 3.5.....
It's amazes me hour we are so different with the differing anti bodies....
Thanks for your reply
What's your white cell and neutrophils count? My Rheumy and GP always tell me to go to emergency room every time I have high fever but everytime emergency doctor check my white blood count it's normal and they send me home. What i learnt is virus increases white cell count so if it's viral I don't need to go to emergency room!! Bacteria infection would be a different story i think it might be decreasing wcc..not sure since I haven't had any bacteria infection. It's hard to distinguish between viral or bacteria infection:( do u also run into hospital when u have a high fever?
I am visiting my in-laws at the moment and mother in law has a nasty cold so I am being very careful :)
Thanks for your reply.
Yes Everyone is so different and this is probably hard for Rheumy to decide which disease it is.
My second Rheumy said more types of antibodies you have less severe the disease will progress. So he said I don't need to worry so much even I have so many different types of them.
My current Rheumy said she decides whether it's lupus or mctd according to ds dna c3 and c4.
My c3 and c4 are sometimes out of range so I am being watched closely. Ds DNA hasn't been an issue but i get checked every four weeks for that too.
My issue is ccp its killing me if i miss mtx dose.
Thanks for the reply
Mary Ann
Mary Ann