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...

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Neany360 07/22/2016

Hello All!! I'm currently in the process of being diagnosed with MCTD. My ANA-antibody test came pack positive, so I'm in the process of trying to get referred to a rheumatologist. While waiting, I'm noticing that my body is having a total melt down. It hurts to go up the stairs, get out of chairs, and/or get out of bed. I had pleurisy and pericarditis this passed year, which is what started this whole journey of getting tested. It feels like my entire body is weak and hard to function with, these days. My teeth seem to be getting it really bad recently. I need 4 root canals. My gums are swollen and inflammed. And my teeth have become weak and brittle. I regularly go to the dentist, brush, and floss. I'm not sure why this is happening to me, but it's causing me great depression at the moment. It's hard to get into to see a rheumatologist, because they are scheduling out as far as February, and their aren't very many clinics in this speciality, apparently. I hate that getting diagnosised takes so long, and that soooo many doctors didn't believe something was wrong with me until the last visit I had. I am only 34 years old, and I walk like I'm 80 plus. It's been a rough year. Is it normal for it to take so long to get in to see someone? Did anyone else have mouth issues during a flare up? Any other information you can share would be most helpful. This is all such an excruciating process.

renee 07/22/2016

Hi there. It isn't much of a comfort to know you are not alone but your story sounds so similar to mine. My diagnosis occurred when I was hospitalized with pericarditis and pleural effusions... after 10 years and 4 different doctors with several misdiagnoses. I remember walking like I was over 80, being scared to sit down on the toilet since I didn't think my muscles would get me back up because of severe muscle wasting in my shoulders and legs. I also had mouth ulcers at different points in my disease process and glandular swelling beside/beneath my ear so I looked like a lopsided chipmunk.
I'm not sure how long the average wait for a new rheumatologist is, but from internet 1st person accounts it seems to be in months, not weeks. Both rheumatologists I've seen have been super, super busy. They might get only 5-10 minutes per patient for the established ones and about 30 minutes for new patients.
Is your mouth dry? Are your eyes dry and itchy? It is possible you have Sjogren's (also called sicca) and that could explain the oral health/teeth issues. Sjogren's affects the moisture producing glands of the body and often accompanies autoimmune diseases like MCTD. Some people only have Sjogren's and nothing else, but it can be a devastating disease itself since it may affect more than the mouth and eyes. <a href="https://www.sjogrens.org/home/about-sjogrens/symptoms">link to symptoms at sjogrens.org</a>
My doc gave me a prescription for salagen and it has saved my teeth, so far. For over the counter products he recommends Biotene and Xylimelt.
I wish you all the best and hope you are able to start treatment soon with a good doctor.

Katalyzt 07/22/2016

I am just running out the door, but briefly: Yes, mouth issues are common, though it sounds like you have had a bad run of them. I've spent tens of thousands of dollars on dental work. The problems you are having with rheumatology are, sadly, typical-- and you may have to make noise and file grievances to get past them. This illness is rare, which means it is not profitable to do research on it, which means you will find most good research on MCTD is older-- like, in the 80s, 90s, and early 00s, before greed took over the health care system.

Pericarditis and pleurisy are rarely chronic, or at least that is my understanding. It IS important to have regular access to steroids (prednisone) if you are having those symptoms. For most people I know-- which is not many-- who have had either of those symptoms, you go through a bad run of 5 to 10 years when they recur, but generally each flare up is not as bad as the one before it. (This is what my rheumatologist predicted in 1975, and it's EXACTLY the pattern those symptoms had.)

My dental issues have improved as well-- they got MUCH better when I stopped smoking, and they improved a little more when I stopped drinking. Our saliva production and tear production is often all screwed up-- the chemistry is off, I think, so these fluids don't do as good a job as they should. My own theory is that alcohol makes this worse (and tobacco definitely does.)

Welcome, hang in there, hit us back and let us know how you are doing.

Neany360 07/23/2016

Renee and Katlyzt! Thank you so very much for your responses. It is comforting to know that I'm not alone, although it's bitter/sweet. So many people don't understand the pain I'm feeling because I look normal on the outside. But inside I feel like I've been hit by a truck multiple times. I will definitely look more into the sjogren's information, thank you Renee. I did have to get on Prednisone to stop the Pericarditis. I was on it for at least a month and a half before I could taper off. Not fun at all. My swelling in my ankles and and hands is ridiculous. I haven't been able to wear shoes in years. I didn't get glandular swelling, but my lymphnodes swell often especially around the time the pleurisy or pericarditis would appear. This disease seems complex, but I'm glad to know that there are people who can help me understand it better. Thank you for sharing what you know and your stories. I greatly appreciate it. I'll definitely be in touch. I finally got a referral for a rheumatologist today, and may be able to be seen by September (fingers crossed).

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