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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ValleyofSun 08/28/2017

I was just diagnosed with MCTD in February of this year, saw a rhematologist, said was mild and was put on plaquenil. April I'm offered a job across the country, move end of May. Now 3 months later I hadn't found a new rhemi here yet and 3 weeks ago had a severe allergic reaction (or so I thought) that required the ER, a shot and steroid and antihistamine pills - followed by 3 more episodes requiring ER, epipen and 911 call and luckily this last time I have a steroid now thanks to Rx from allergist. He's got me on a bunch of antihistamines, zantac, etc. to try to control this while they're running blood tests. He thinks this isn't allergy but may be related to my MCTD, so I then do some research and am discovering maybe this is a flare-up, my first and I'm not gonna lie - very scary. I now carry an Epipen, and going home soon to get my steroid as I realize need to carry that in my purse as well I guess (am at work). I work full-time as a designer and am at a new job and recently have had to miss 3 days with all of this.

What's odd is this all started when I went out of town one weekend and got heat rash on the front lower half of my legs that were exposed to the sun/heat.

Is this a flare-up? should I get in to see my new rhemi now?(they currently have me scheduled for Dec.)
Should I be on more than plaquenil?

I'd appreciate any help and/ support, as I don't know anyone else with this.

Thanks, Alli

MToennis 08/30/2017

Sun can certainly cause your disease to get worse. It can cause more than a flare. Now, I cannot say if this is MCTD or not, but it certainly is possible. Call your new rheumi and ask if you can be put on a list for those getting canceled appointments. If someone cancels, they can call you and see if you can come in. But keep your Dec. appointment. Also, your dr can call and see if you can be seen quicker. For a flare, they will usually give steroids but you may need a longer course to get back on track. Good luck!
Mary Ann

ValleyofSun 08/31/2017

Thank you MToennis! What else can sun cause? Thanks for the advice, I may just call a new rhemi tomorrow, someone my MD referred me to and sent urgent to them. I was just told to use steroid cocktail with Zantac and a Benadryl if my throat tightened again, but honestly took Benadryl and steroid earlier as I've had the same rash on my arms for 3 days.

MToennis 08/31/2017

The sun can cause your immunity to rise which causes a rise in antibodies and those fight your organs and tissues. We are our own enemy! My first rheumy gave me hell over a mild tan I had. Then she calmed down and told me she had a young woman in the hospital with kidney failure after a beach trip where she was laying on the beach in the sun for a few days. Came home near death's door. Be careful!
Mary Ann

ValleyofSun 08/31/2017

I've just moved to Arizona and am a new hiker. I've never been a sun goddess as I burn, but I can't lead a lifestyle where I avoid the sun, how would I ever hike? Sorry this is all very overwhelming. Before I moved from VA I'd never had any effects from MCTD, I've just been taking plaquenil every day, one little pill.
Alli

MToennis 09/01/2017

Use your sunscreen and buy long pants and shirts. Wear a hat and enjoy the outdoors! Those rip stop pants are not too bad. I have several pairs and a shirt made from the same stuff. Keeps the bugs off too!

ValleyofSun 09/01/2017

Thanks Mary Ann! I'll look into the rip stop pants, my one pair of hiking pants and long sleeve shirt is supposedly UV protected too. :)
Allison

Katalyzt 09/04/2017

Great advice MT-- and I never knew that about the sun and the immune system! Thanks so much for explaining that!

VS, if it's any encouragement, I still skied this year and have been bodyboarding 7 times so far. I *do* limit my exposure every way I can... sunscreen, wetsuit and a ridiculous looking rubber bathing cap to keep the sun off my eyes. I try to avoid sessions at noon... usually it's like, park my car, walk to the high tide line, put on my wetsuit, 20-40 minutes in the water, and then I do NOT linger on the beach very long... I will catch my breath for maybe 10 minutes at most (and I am panting very, very hard for the first two minutes of that), watch the other surfers and birds and dolphins (if I'm lucky) and then go back to the car. Total exposure = 1 hour or less. (At dusk or early morning, sure, I might stay longer.)

The key thing is: Do not wait until you're tired to get out of the sun.

ValleyofSun 09/06/2017

That is good to hear Katalyzt about the skiing and bodyboarding. :) I figure if I keep it to 2 hour hikes I'm good, but not sure how I'll do day trips to Grand Canyon or San Diego though? Thanks for the tip about not waiting until you're tired to get out of the sun.

ValleyofSun 09/06/2017

I did get test results back and no food allergies or environmental, besides ragweed, so guess it was all flare-ups. So I'm kind of stuck between being relieved I don't have new allergies, and baffled those were all flare-ups, as they were no joke! I think I'm going to have to pay even more attention to my anxiety/stress and diet than ever, so more meditating may be needed - and any dietary suggestions besides healthy veggies, fruit, protein?

lizardqueen 09/26/2017

Other foods that are often on the top of our list to avoid is Wheat/Gluten or sugar. Sorry to hear about your flare-ups, I have been diagnosed for about 3 years and I am still trying to understand flare-ups and what can cause them.

ValleyofSun 09/30/2017

Good to know lizardqueen, thanks.:) Wheat/gluten and sugar - how do you avoid that, isn't that in everything?! Any tips would be appreciated. :)

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