I have had symptoms of this disease since I was a baby. I was fortunate to have numerous remissions and am now 63 years old. I have had a normal, full life. Went to college, played basket ball in high school, married, have 4 children and one grandchild. I worked until I was 60 and retired to do volunteer work. I stay very busy. Yes, your baby can have a good life. Take heart!
Mary Ann

Mary Ann,

Feels good to see your above post. So much uncertainty has been on my mind lately. If you don't mind me asking.. what led you into your remissions and we're these symptoms free remissions?

Well, I just went into remission several times as a younger person. I was sickly as a child and became quite healthy as a teen. That was good until I was in my late 20's, then developed joint and muscle pain all over with severe fatigue. I was told I had an autoimmune disease at that time, but then it went into remission so no diagnosis of what kind was given. I was good except for a chronic low white count and rashes that came and went until my early 50s then all the problems surfaced again. I took Plaquenil and Medrol. That all helped and now they say I am back in remission after about 8 years of problems. But I am still on the Medrol and the symptoms are just things that come and go. For instance, one night I woke up and every joint in my body was screaming. I took some Tylenol and toughed it out. It was bad the next night and day. I was planning to call the dr but when I got up the next morning, it was totally gone. I had done nothing to cause this or get rid of it. One thing that has not changed, My spouse says I sleep all the time. I have always needed 9-10 hours of sleep to feel rested. Right now, for some reason, I cannot sleep past 7 hours and wake up tired. I will say, stress is a factor in bringing on symptoms, but really, there is no rhyme or reason except is does seem hormones sometimes influence the disease.
Mary Ann

My experience follows a pattern that is-- in broad terms-- similar to Mary Ann's generally-- the illness came on really strong when I was a teenager (about 15 or 16) with muscle aches, fevers and pericarditis (inflammation of lining of the heart). There was one year I missed 1/3 of school, others where I had activity restrictions-- I could go camping with my friends, but not take the longest hikes, that kind of thing, that was during a minor flare up in my 20s. Then nothing until I was in my late 40s, when I got a blood clot and aches and pains and exhaustion and brain fog got worse. (In fact, the brain fog and exhaustion had been creeping back in since the mid '80s, but I chalked it up to being a pot smoker. Imagine my surprise when I stopped smoking weed for over two years and the brain fog was still as bad as ever!)

Now I am 59, I take painkillers and CBD, and live pretty much a completely normal life-- work over 40 hours a week, sports and hobbies, etc. Headaches, exhaustion, brain fog and dysphagia were my main symptoms, over the past few months they have all become well controlled except for the dysphagia, which is a bit worrying-- I have a little trouble keeping weight on, but if I eat as much as I can on the days when I can swallow properly, and take an hour per meal on the days when I have trouble, I can keep my weight pretty stable. I am a guy, so I've always suspected my symptoms are milder, but there are a few guys on this forum who have pretty serious symptoms, so I'm not sure.

I've actually had a very active life-- a lot of skiing, playing in rock bands, body boarding, writing for TV shows-- and while I agree that stress triggers symptoms, that's only true during periods when the illness is active, and even then it can usually be managed. Your daughter should probably avoid 12-month-a-year 60-hour per week or mandatory overtime situations, but I would recommend that for anyone... I just recommend that more-- way more-- for someone with MCTD.

The hormonal connection is anecdotal, but we've seen it here again and again: Flareups at adolescence, pregnancy, menopause, or andropause, if there is such a thing.

Also, I am assume the rheumatologist ran more than just an ANA. If you want to tell us more about your daughter's test results, feel free to. They are hard to figure out, there is definitely a learning curve!

Kat & MToennis - Thanks so much for your posts. I was recently (12 wks ago diagnosed) and after 3 months on plaquenil and off and on prednisone my Rhumey just added cellcept today ... has anyone else used cellcept?

LifesGoodx6-
I started with Prednisone and methotrexate as my two main drugs. Then I went on Plaquenil to go along with the first two. About 4 months into being diagnosed, my rheumatologist started Cellcept. I had horrible time with Cellcept. I gained 15 pounds in 2 months. I was taken off of it, only to be put back on it two months later. Again, I had gained weight, and was nauseous 90% of the time. Cellcept did not work for me, but that does not mean it won't work for you. Everyone's bodies react differently to medication.