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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lmrmom 05/25/2010

I really dont understand at all ,I know I need to ask more questions at the Rhuemy appts. I also have fibro so I dont know its prob that that makes me in pain and tired I take Lyrica and Flexeril. I take Plaquenil but try to stay off prednisone .I notice a lot of people mention temperature I dont take it anymore but when the twins ,my grandsons were babies I was taking temp once in a while and I was always 100 101 ,it was like that for a year so I thought id mention it to doc .I tend to ignore things lol.My biggest symptom is the pain of inflamed muscles ,Ive recently noticed weaknes "my muscles arent getting weaker but everything seems so much heavier' Im in denial lol . getting up the stairs at bedtime is a killer and my legs and feet ache all the time but I think thats the fibro ,oh and I have all sorts of skin rashes .When im in the sun I get round red spots that slough off and turn into sores .Is this a I guess we'll see what happens disease .I know the goal is to keep flares down . I guess Im sick of taking pills and still feeling like crap but at least my organs are fine .

MToennis 05/26/2010

Sounds like fun! LOL
But seriously, stay out of the sun. Sun exposure can contribute to organ involvement. The sun changes the chemistry in your body.
As for what will happen- Who the heck knows? Maybe we dont want to!
I wish you all the luck in the world.
Mary Ann

deleted_user 05/27/2010

I feel the same way. I have the same questions. I finally figured out last night that I was in denial (for real). My large muscles seemed to be effected with the swelling and the sun is hell on me. My head is full of little bumps again, which scab up, nothing in them, then sluff off. I don't know either what happens with this disease, but I hate it. I'm sick of taking pills also, and I work with drugs all day long, how about that. Good luck.

deleted_user 05/30/2010

http://www.uptodate.com/patients/content/topic.do?topicKey=~oG55S_q6B_QV8G

http://www.uptodate.com/patients/content/topic.do?

topicKey=~oG55S_q6B_QV8G Maybe these links will help give understanding. hugs Marilyn

Catalyzt 05/31/2010

One quick note, for what it's worth:

Everyone's body chemistry is different, but I think Flexeril is just junk. I swear, I can take half a tablet of that crap-- I forget the dosage, it's the normal one-- and I feel half dead for almost 24 hours. Why on earth they would give that drug to anyone with energy problems is beyond me. Maybe there's something else they can substitute eventually...

Best,

--Cat

MToennis 05/31/2010

flexaril is wonderful for muscle spasms- if you can go to bed. i taje it when i have back spasms-at night. never during the day. it is a strong sedative.

mary ann

deleted_user 06/01/2010

Hi, i have had this illness for 20 years, i also have fibro...don't know which came first..or both together. I havn't yet found a medicine that really helps...apart from steroids unfortnately. I have tried all sorts of natural therapies, including acupunture, reflexology, chinese medicine, homeopathy, massage, diet, and so far, have only had short term relief. The thing that helped me the most was going to a spar and sitting under the strong jets of salt water. Unfortunately it was at a posh hotel... many miles from home.
Symptoms do come and go, and i thank God for that. The best thing to try to do is try to figure out what makes you feel worse and avoid it. I think stress and the sun is the biggest for me. I try to consiously relax my muscles and mind. I am an insomniac but so far havn't taken any meds for it.....fortunately i don't have to get up for work in the morning.
Some doctors believe anibiotic therapy works, but its not mainstream.
Wishing you a good week ahad.
Hugs x

deleted_user 06/03/2010

I have MCTD and the worst part of the disease is acceptance. It took me a good year before I finally accepted that this was going to be my life from now on. Believe me I am not happy about it, but have made up my mind that I am going to fight it all the way. I have a very good Dr. who works well for me. We have tried many drugs through the years. He says with this disease, because of the overlapping syndromes, that all that we can do is treat the sypmtoms of the disease. For 5 years was on prednisone, injectable methrexate, relafin, lasix, postassium, and folic acid. About 9 month ago a shortage of the injectable methotrexate began and we can no longer get it. Tried taking the pills, but to no avail they did not work the same. Ended up in a bad flare. So we slowly came off the steroids, and now I am on a new regiment. Just started a week ago taking 300mg of gababentin 3 times a day, and cymbalta for its affect on never and myalgia pain. 60 of cymbalta a day. I will try and post on the site here to keep people udated on how the drugs are working. But whatever you do. Don't give up. I know just how frustrating this stupid disease can be. But like my Dr. says, we just keep trying until we get something that works. Make sure your Dr. listens to you and you work well together. That is one of the most important things. Having a good Dr. is what is most important with this disease. And a doctor that is not willing to give up either. I am blessed that way. Do whatever you can to keep your spirits up. Because this is a never ending battle. And a word to the wise is to stay out of the sun, but it you must be out there, make sure you have the right clothing and wear a hat. I work in my garden, fresh veggies, but i put on sun block, long sleeves and a hat. Not giving up my garden. Hope they get something to work for you soon. Like I said I will keep updated on my new meds. Stay strong. Julie

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