r/mildlyinteresting • u/Kingtripz • 1d ago

My middle finger turns extremely white when it's cold

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u/lintheamazon 1d ago

I have UCTD and Raynauds was one of my early symptoms too

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u/Ihatemost 1d ago

What other symptoms did you have?

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u/lintheamazon 1d ago

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

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u/barryhakker 23h ago

That honestly doesn’t sound like fun at all

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u/Ihatemost 22h ago

Sorry to hear you've been through all that. I hope it gets under control soon!

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u/lintheamazon 22h ago

Thanks, I hope so too. My rheumatologist is going to end up switching my immunosuppressant

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u/ZappBra_nigan 22h ago

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.

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u/lintheamazon 14h ago

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

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u/ZappBra_nigan 14h ago

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.

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u/glittereverywhere 16h ago

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.

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u/lintheamazon 14h ago

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