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...
Hello everyone,
Its been a while since I've logged on.
I must say, this year has been one hell of a roller coaster, for myself and all of us. I hope the holidays aren't causing any flare ups.
I am very scare at the moment. 3 of my doctors are concerned I have pulminary hypertention... I just turned 22, and I was diagnosed with MCTD right after my 21st birthday. Which means if I do have hypertention then I have at most 4 years to live.. Im terrified right now. I have an appointment with the cardiologist at 1pm today, and will hopefully find some answers. Although, I kind of don't want to know.
I don't understand how I was fine for 20 years, and then all of a sudden not. Then, have my disease progress so much in 1 year. I'm just baffeld. I don't know what to think right now. I am very scared. I've been trying to convince myself not to worry yet since I don't have any test done yet, but my emotions are getting in the way.
Please keep me in your heart and thoughts.
I agree that it does seem like a very fast disease progression IF you have pulmonary hypertension, and I'm sure you are scared.
If that is the case, however, pulmonary hypertension does not always follow a linear course, like everything else with this unpredictable and chaotic illness. Yes, it's one of the more serious complications of this illness, but there are a few people on this board who have had this for as long as I can remember with only very slow progression.
Let's also remember that you are at an age when some symptoms are often worst. Yes, the disease can go from 0-100 MPH very quickly, and if it does that, it's likely to do it at precisely your age. MCTD seems to be kind of bimodal-- one big peak when you are a young adult, another in your 50s sometime, we think it might be a hormonal thing, I think there's some evidence for that, but it's still highly speculative. (I think I was nearly 20 when I had pericarditis, with at least two other episodes, another at 21 or 22 and another at around 26. My blood clots were in my early and mid 50s.) If the PH is caused by inflammatory changes, and does not persist too long or become to severe, it seems possible that it could improve if you can get through the period of peak symptoms-- I don't know that or have any evidence for it, it just seems logical that it might.
Hope your doctor comes up with some good strategies for symptom control-- they might use steroids, DMARDs, or both. I'm sure they'll also recommend vaccinations and avoiding any exposure to the flu or pneumonia.
Please post back and let us know how you're doing-- man, this board is dead, I'm gonna hop around and reply to some posts, see if we can get some other folks back online. Do your best to have a happy holiday, and here's hoping for better health in the new year!
In the meantime,
Beth