Undifferentiated Connective Tissue Disease turning into Lupus?

Posted by pattym @pattym, Apr 24, 2020

Hi! I developed an autoimmune disorder two years ago, and have been relatively stable until now. This is my first experience going into a flare, and I'm not sure what to expect. I've spoken with my rheumatologist, and have done extensive reading, but was hoping to hear from other people with Undifferentiated Connective Tissue Disease about their own experiences with flares. What have they been like for you? How long have they lasted? And did you end up needing to take steroids, or switch medications? If so, what was that like? I had to take steroids for an allergic reaction long ago, and I could barely sleep. I dread having to take them again. But I also obviously don't want to end up with worse problems because of this autoimmune condition. In my case, I have a falling C3 level, slightly low white blood count, and some increasing symptoms. It could be pointing to lupus, but I don't have a lot of the classic blood markers and symptoms of lupus. So...I'm not really sure what to think at this point. I'd be very interested to hear about your experiences if you're willing to share!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@mils

Hi everyone!
I have recently joined the connect group and not sure if it's ok for me to revamp an old post from two years ago, but I couldn't find many discussions on UCTD so I thought to give it a try.
I have been recently diagnosed with UCTD, based solely on symptoms, positive ANA and good response to prednisone. I have been on Hydroxychloroquine for the past 4 months and being ok, until out of the blue, I am experiencing new symptoms. I was wondering, from people who have been dealing with this diagnosis for longer than I have, if they have ever experienced flares that started with new and worse symptoms than the before. Also, has your disease changed the response to treatment or differentiated to a specific diagnosis? I have asked this questions to my rheumatologist, but all they can say is always "it could be" or "yes it could happen", so I thought reaching out to patients might provide me with more real life experiences.
Thank you to anyone who is willing to share!

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I had a positive ANA, and followup ENA showed Mixed Connective Tissue Disease which contains Lupus and 2 others that all overlap. So the test for Lupus was negative and came with a paragraph saying it was included in a combination disease. It was the first I'd ever heard of MCTD

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Does anyone have feet and ankle cramps . I've had mctd 6 Yeats and the cramps are getting more consistent

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Drink tonic water to help! I buy the diet version but stir in cranberry or orange juice to make it taste better. The quinine in the tonic water is the ingredient that causes this to work! Best wishes!!

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