So glad you found us. Just know that it can be a lot better and you are not alone. Maybe a new rheumy is the answer, but it is hard to find the right one. Good luck with that. Read all you can but be pragmatic. Some of the stuff out there is old data and does give a gloom and doom prognosis but the new data is much more favorable for a normal life span. Keep going to school if you can. The better the job, the more money, health care and flexability. But, this is a new life for you and does take some acceptance. I wish you a day of feeling normal!
Mary Ann

Thank you Mary Ann! Is there Anything at all that you could recommend for my symptoms? Anything that has helped you with fatigue? I have not had a single class in 4 months that I haven't fallen asleep in at least once during the 1.5 hours I'm there. I didn't used to be like this.

Hey guys - So glad I found this thread. My first post. I was just diagnosed with Lupus SLE & MCTD about 3 months ago - my head is spinning with all that this (could) mean ... especially with young children. Has anyone been prescribed something other than plaquenil and prednisone for MCTD?

Lifesgood- hey! I'm new here as well and have not learned much about what others are being prescribed, so far. However I'm interested as well. Maybe if people start replying to your posts you could let me know? I'm on plaquenil 2x a day. I get a dosal pack when symptoms are bad because he doesn't want me on prednisone with me not having had kids yet. Needless to say, I'm in my local clinic getting a steroid shot every other month and the dosal pack nearly every month.. trying not to take it unless absolutely necessary. From what I have seen so far, I will say, I'm being told to stay educated with myself, my symptoms, and the disease. But not to go into panic over some of the older information that is everywhere! I'm sorry I'm not much help!

Although they tell us to stay out of the sun, I find that getting outside for a little bit each day helps with the fatigue. Is it vitamin D or is it melatonin or maybe the movement. I try to stay in the shade but just a stroll around the yard makes a difference. A little exercise also helps some, but too much and I am knocked out for the day. Also,, if you are not taking Vitamin D, get some and take one or 2 a day. I cannot take Plaquenil, so I take a small dose of steroid daily. I really know when I miss a dose. Remember, Plaq needs about 3-4 months to do its thing, so if you havent been on it that long, give it some time. As for pain, back when I could take it Celebrex or an anti inflammitory daily was really my friend. Not having so much pain decreased the fatigue. As for alternate drugs, some have taken methotrexate. I havent as I cannot due to a heart problem. Maybe this will help you some. As for friend requests,...sigh. This thing has a new format and I cannot figure out how to respond to those requests yet. It is not that I dont love you all!
Mary Ann

Mag18, I saw your post and it led me to join this site. I usually try to stay away from the internet with health-related things, but my doctor didn't know of any support groups in the area and I think I need all of the support I can get right now. I've had symptoms very similar to yours for the past 5 years and after seeing dozens of specialists over the years, I have a half-hearted diagnosis of undifferentiated connective tissue disease. My blood tests are relatively normal, with the exception of a consistently elevated ACE level and elevated liver enzymes. I don't think my current rheum. is convinced that it's MCTD, though, and he recently sent me to a fibromyalgia specialist, who said no way. Other specialists have ruled out M.S. from looking at my normal MRIs and didn't think a spinal tap was warranted. For awhile I was getting painful ulcers (oral and vaginal) and Behcet's was looking likely, but those symptoms suddenly cleared up and then I didn't fit the criteria.

I'm 20 weeks pregnant and started to feel like a completely normal, healthy person up until my first post-pregnancy flare up last month. I recovered from that and had a second flare up last week, which targeted my legs and kept me home from work for several days. The scariest part of these flare ups for me is how it affects my ability to go up and down stairs. I'm a grade school teacher and need to be able to keep up with my students, as well as my baby girl who will arrive in June. I was on plaquenil a few years ago but went off of it when I started having trouble with my vision.

The big question I have right now is: do I even have MCTD? The medical community has not been able to answer this question for me in the past five years, and I'm wondering if I'd have better luck finding answers here, from everyone else's experiences.

Hey em018! A couple things, I have literally taught myself everything about this disease through the internet and my own symptoms. At first my dr seemed unsure too. He diagnosed me with UCTD as well, but from what I understand, this is a disease that you don't typically do one blood test and see a clear "yes". I think its common to be unsure at first but what I noticed was a couple years in and I have had a lot more symptoms come up that make it very clear to me that this is what I have. Even if it takes the dr 5 years to change the official diagnosis to MCTD, or if he never does, he said himself that he will treat me for MCTD even though he can't technically call it that because it is SO hard to diagnose for most. If a dr put you on plaquenil and diagnosed you with UCTD I would research and use this forum to get a good understanding of the disease and I think you would feel more confident in answering that question "do I even have MCTD?". For me, there seemed to be a new question like this all the time. As soon as I would find answers, something else comes up that there just is not clear cut confirmation for.

Now, I'm sure you have researched the pregnancy with this disease. I see a lot of mothers saying that being pregnant caused them to have worse flare ups. And I have seen very very few, but still there were some that said that being pregnant helped them with their flare ups. So hopefully, once your daughter is born, your flare ups will be less intense! If your symptoms just continue to get worse after she is born, I would suggest going to your rheumatologist and seeing if you can get some help. I know this disease is confusing and scary at times. But I do think this group will help!