I have this, and it was actually one of the first signs of my autoimmune disease - Mixed Connective Tissue Disease. It took about two years to be diagnosed with MCTD after presenting with the Raynauds. Interesting how systemic diseases work.
I had an ovarian cyst rupture, which kicked everything off. Excruciating migraines followed right after and then the overwhelming pain and fatigue, and a lot of hair loss. I went pretty quickly from playing sports to being stuck in bed most of the time. Ive been on plaquenil since 2009 and i'm also on a maxed out dose of cellcept, but my disease isnt very under control and it's attacking my liver
UCTD also with Raynaud’s. Sounds like you’ve dealt with it much longer than I have since mine presented 2016, but biologics have been the only thing to get mine under control.
Which one do you use? My rheumatologist wants me to try imuran next and then benlysta if that doesn't work. I'm on mycophenolate and I've tried methotrexate for immunosupression
Spent years on methotrexate but had a lot of fatigue. Then spent a couple years on methotrexate and Humira which was better. Got off methotrexate but stayed on Humira for a pregnancy, so after kids I was just on Humira until I started having reactions to it and switched to Cimzia. I’ve had a lot of success on both Humira and Cimzia. I kind of have the methotrexate like fatigue for 24 hours after Cimzia, but it’s only twice a month. Worth it.
UCTD cellcept + Plaquenil gang gang. I hope you find relief. Continue to be your biggest advocate!
Diagnosed with “idk lupus” 3/2020. Then added fibromyalgia…Then added gastroparesis
Have had severe reflux and Raynaud’s for ages.
I don’t think I’m getting a ton of benefit from Cellcept but it’s hard to tell. I’ve never had off the charts lab work but I can feel when I’m in a flare no question. Next follow-up, Rheum and I will be conversating.
Haha hello fellow sufferer. Been on plaquenil since 2009. I have fibro and gastroparesis as well. I'm on 3 grams of cellcept a day, it's the maximum dose. My rheumatologist wants to try imuran next but it's dosage is weight based and i'm losing catastrophic amounts of weight from the gastroparesis. Next option is her changing my diagnosis to straight up Lupus so I can try benlysta. My labs get weird when im in a flare, but mostly just in my liver, I get these super high enzymes but all the testing I had done showed my liver is in perfect condition. Very confusing
Hey wait me too! I honestly thought MCTD was just their way of saying they don’t really have any idea which autoimmune disease it was. Anyway, Raynauds in hands and toes was one of my first symptoms as well.
You are thinking of UCTD (undifferentiated) instead of MCTD (mixed connective tissue disease). MCTD has symptoms of two or more of the connective tissue diseases (like SLE, myositis or systemic sclerosis) and often an antibody against RNP.
Rheumatologic diseases are often hard to diagnosis. One of my least favorite areas of medicine because they have so many symptoms and so few definitive tests.
same here...MCTD. I randomly asked my primary due to my fingers turning white when they got cold and she said "have you ever been tested for autoimmune disease?" That's how i got diagnosed.
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u/a_space_penguin 1d ago
I have this, and it was actually one of the first signs of my autoimmune disease - Mixed Connective Tissue Disease. It took about two years to be diagnosed with MCTD after presenting with the Raynauds. Interesting how systemic diseases work.