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Just Diagnosed with UCTD, What should I expect?

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Posted 9/5/2009 11:23 PM (GMT -6)
Hello All,
I am a 39 Male I was just told I had UCTD. I am relieved to know that I am not just a lazy unmotivated person who is always in pain and who was starting to think it was all in my head. I was kinda stunned when I walked out of the doctors office, but now the research starts. Since I have no idea of what to expect. A little background on me I have always been an extremely energetic person until about 9 years ago. I started getting massively fatigued all the time and gained alot of weight. Hair started falling out and I was getting a red rash around my nose and mouth area. I have very good insurance and started going to my doctors about this years ago, but it was always said to come from my job. I usually work 70-100hrs a week. I was told to eat more fruit and veggies and work less. But this never helped. about 3 months ago my doctor retired and the new doctor pulled out all the stops and sent me to everyone and where. I was Just told to start talking Plaqeril and Vitamin D and do more bloodwork.

1)What Can I expect from the Plaqeril?
2) Any foods that I should avoid?
3) Anything I should do that has been shown help immediately?

Thanks in advance for any help
Posted 9/5/2009 11:31 PM (GMT -6)
Check out the information in our first topic "Lupus Resources", where we have condensed some of our best advice about the "Lupie Life".

Plaquenil gives some people a bit of tummy trouble at first - remember to take it with food. Some people have better luck taking it with the evening meal rather than the morning meal, I personally have never had trouble with it.

You won't see any quick results - it takes 4-8 weeks before most of us notice anything, plus it is kinda' a "stealth" med....usually people don't think it's doing anything, or not doing much. So it sometimes gets stopped....AND THEN we find out it really has been doing a whole lot!

I can't think off hand of any foods to avoid, but you should try to stay out of the sun. The sun (and the heat) can rapidly stress & deplete our bodies, and tire us out beyond belief. Easier to avoid than to try to recover from.

Hope that helps -- others will come along and post, but maybe not till Tuesday evening, as it's a 3-day weekend in the US & Canada.

Take care,
Posted 9/6/2009 8:37 AM (GMT -6)
HI and welcome. I don't have a lot to add to the great info that Lynnwood gave you. As overwhelming as it can be, it can be kind of a relief to get a diagnosis. So many of us were made to feel like it was all in our heads.

Just be patient with the plaquenil - it can take several months to really work and taking it with food will help some with any stomach problems. My stomach problems went away after about 3 weeks.

Take care.
Posted 9/6/2009 8:53 AM (GMT -6)
Welcome!
Lynnwood and Hippimom both covered everything you should know, but I wanted to add another welcome.

Try to pace yourself, taking rests between activities (and EVERYTHING is considered an activity - like taking a shower) - this helps you avoid some of the worst of the symptoms. As you adjust to the meds, you should start feeling better.
Good Luck and Welcome!
Posted 9/8/2009 12:15 PM (GMT -6)
I have MCTD Mutliple Connective tissue disease . Much the same thing I think .Plaquenil keeps me from flaring up and being in horrible pain .I get no side affects from it as far as I can see . I use prednisone when I do flare up which is once every 3 months or so. I really don't understand my condition well .I have fibromyalgia too so that confuses things more . I've tried to educate myself but when your disease shows symptoms of 3 or 4 diseases it gets pretty confusing to figure out . My symptoms were pain ,pain ,pain and rashes mostly,of course my blood work showed my ana titre was high and other stuff I guess ? I really need to ask more questions lol

Linda
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