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 to have found this forum/website!
I was diagnosed a few weeks ago with MCTD. its overwhelming to say the least.. Little background on my fun journey...
I have been diagnosed with Multiple Sclerosis since 2003... This past November (over Thanksgiving lucky me!) i had to have wisdom teeth surgery (seriously at 34 years old who has wisdom teeth pop up lol ugh). SO had that and was on an antibiotic for 7 days as well... Come mid December I woke up SUDDENLY one morning with literally EVERY single joint in severe pain...followed by muscle pain a week later as well.... My neurology saw me and sent me a referral to a Rheumy... That appointment took 3 months to get and after a lot of blood work (ANA: > 1:1280 speckled, ra factor negative, all tests negative for lupus, all blood work within range, but RNP >8) so the doctor came back and said i have MCTD.
I did alot of research and was confused when she said its not life threatening and can't kill me... Of course I googled (bad thing sometimes i suppose) and it sure does sound scary and CAN be life threatening? So she put me on prednisone and I began plaquenil... 3 weeks of that with the prednisone and it was doing great on my joint pain. I stopped prednisone and yesterday had an allergic reaction to plaquenil that sent me to the er . An itchy serious rash and my mouth and tongue began to swell and go numb... so needless to say i am not off of plaquenil and on prednisone again to battle this hideous rash.
She said next steps are to try methotrexate... i read reviews and it sounds super frightening!
I am trying to wrap my head around it all, reading things like most people dont live 6-12 years from diagnosis... Trying to find all the info I can and I am not finding a WHOLE lot out there?
i guess i am a little overwhelmed, scared, and feeling slightly lost.
Let's say that only represents half the actual mortality events. That is still only about six people out of 300 members that have wandered through here at one time or another. Maybe members are getting really sick and dying and we don't hear about it, but that doesn't seem likely-- when it's happened, people reported dramatic and rapid increases in symptoms, and we don't hear about that very often.
Based on our experience here, it seems like that is very rare, or it happens very slowly... sometimes more slowly than anything else.
The meds, particularly methotrexate, are definitely dangerous. Some people do have a good response to methotrexate, and I do know personally a few people who have been on it, or on and off it, relatively long term and swear by it.
But it does seem like there are a lot of people who say it does nothing and has really rough side effects. Immunosuppresants are blunt instruments. They are likely to blow a hole in your immune system at least temporarily, and as Libbmom says, you'll get more viruses and flus. I've had that even with prednisone. Even prednisone will do that, and I've definitely had that happen.
As for me, I would not use methotrexate if my symptoms were not life threatening. I've been lucky; I have done very well with narcotics and CBD. My worst problem now is dysphasia, which, unfortunately, there is no treatment for. So I can still ski a black diamond on a good day, but it takes me an hour to eat a sandwich, and it's very difficult to keep food from getting into my esophagus. I do not like to eat out much, as you can imagine!
I'm 60 years old and work full time, had the illness since I was a teenager. Most recent severe symptom was blood clots in my mid 50s.
As I become more upfront about this illness, and talk to more people about it, I have become aware of a school of thought which is, "Yeah, sure-- you get diagnosed, if you complain about your symptoms, they put you on meds, you get better for five or six years, then you get much worse. Avoid or go easy on the meds, get good treatment for symptoms, get through the first few really bad flares, you can have good quality of life for a long time." But I have no idea if this is true.
If you have significant pulmonary involvement, it's usually an easy decision-- those are the most dangerous symptoms, you probably have to take meds. It's very hard to call in the other scenarios, a very difficult and very personal decision.
I understand your frustration at the lack of information about this illness-- THAT is, in some ways, the worst part of this illness, finding the right mental attitude to deal with something so amorphous. That is probably a bigger problem than the risk of mortality!
At the same time, I keenly appreciate how difficult it is to do good research on this illness. First of all, there aren't a lot of patients, so there's not a lot of money. There are so many symptoms you would have to track with a self-reporting inventory, and those are not reliable instruments. The biomarkers-- anti-RNP, sed rate, ANA, etc.-- do not correlate well with how sick you are.
I have heard older psychiatrists say that rheumatologists sometimes go a little crazy for the same reasons that psychiatrists can go crazy if they aren't careful-- you just don't know what treatment works and what doesn't, or whether people are getting better or worse over time.
Hang in there, you'll figure out what works best. Keep posting back and let us know how you're doing.