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MCTD (Mixed Connective Tissue Disease)

Autoimmune Diseases | Last Active: Sep 18 10:07am | Replies (225)

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@mariejk1

I've had flare ups for years even with the positive Ana tests dr said it was fibromyalgia, been on cymbalta. I am 50 now and flare ups have worsened. I've experienced my worse ever this week with more pain than I've ever experienced. I figured that it was the hurricane stress and all the extra work boarding up my house. Last year I saw a rheumatologist and after all the tests and X-rays, told me I have mctd. Makes sense since my mom has overlapping diseases. Dr wanted to put me on Plaquenil and prednisone and I left there and ignored him since I didn't want my eyes to go bad and didn't want to be on prolonged prednisone. I got a massage last week and my body hurts more than ever. Think he was rough on me. Also, I hurt so bad Thursday I ran home from work to jump in a hot salt bath because I couldn't take the pain. I don't feel any better, I feel worse with deep pain, headache and nausea, red hot face. I think it's time I take this seriously now. My boss looks at me like I'm not really sick. When I'm down, it's at least 3 days or so before I can get up. I am going to start with eating healthier and taking care of myself with lots of sleep/rest. This is the worst flare I ever had and it's bad. Eventually, I may have to rethink the Plaquenil but I will try to stay off the steroids as long as I can. When the rheumatologist told me I had mctd I thought he said I had a connective tissue disease" and I thought, which one? That's when I thought it was a bs diagnosis but I looked at the paperwork and his diagnosis and did some research and now it all makes sense. The symptoms of the 3 diseases, same as my Mom, are exactly what my symptoms are and now I know what I have. I'm used to go go go all the time but with this disease you can't.

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Replies to "I've had flare ups for years even with the positive Ana tests dr said it was..."

Hi mariejk1, I would NOT worry about your eyes and Plaquenil. As long as you have an eye exam once each year, the chances are slim that your eyes will suffer. I am 72 and was diagnosed with Sjrogrens and MCTD about 5 years ago after about 8 years of symptoms and no doctor being able to tell me what was wrong. Finally, my daughter who has Lupus, demanded I see a certain rheumatologist and did .... I have good days and some not so good. Arthritis in the spine and crazy other ailments I won't even mention can sometimes limit me but with a pill regime of Plaquenil, civilemine (for dry mouth, a terrible problem for me) and zanaflex for some pretty bad muscle pain, I keep going. In fact, I am a part-time caregiver for my daughter and am so glad I can do that. I do take anti-depressants for some pretty severe problems I had, but it is controlled. I do protect my sleep and try to eat well. I attempt to live a life that isn't limited by discomfort but when I can't, I acknowledge the reality and take it easy. Got to listen to your body. Try NOT to stay on prednisone. It can be a miracle drug but also comes with some very nasty side effects down the road. Good luck.

Dianne