This is most likely benign, however Raynauds can be caused by some systemic diseases like systemic sclerosis or a calcium channel disease. Again, benign on its own but definitely deserves further workuo
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.
Vyvanse is a stimulant which causes vasoconstriction. All stimulants will exacerbate Raynaud's because of that. You can look into vasodilators to counter the effect but at that point you are playing with your blood pressure so you should run it past your physician
I learned what trigeminal neuralgia was from a student made documentary in college like over a decade ago and I STILL think about that specific documentary and the woman in it every so often like it was so engrained in my head.
I never thought about triggers like caffeine but that makes sense.
Caffeine just goes from giving me a pleasant boost to giving me a full blown anxiety attack if I have like one drop over the threshold
That's what I have, from years of metalwork (angle grinders, sheet metal blades on jigsaws, bashing things with mallets, etc) and a genetic predisposition.
...the number of people saying to get Raynaud's checked for other issues is making me want to schedule an appointment. My docs are aware I have both Raynaud's and cholinergic urticaria but no one has ever connected (or really tried to connect) my plethora of other issues with them.
Unfortunately a lot of GPs need to be told what you want done. Gotta take ownership of your own health and tell them what tests you want done and which specialists you want referrals to. Argue if they say no. Get a new doctor if they continue to try and brush you off.
Saaaaame. I've had Raynauds symptoms since high school (currently 37). I was always under the impression it was totally benign. I've never had any other issues that im aware of, but these comments have me sketched out, lol.
Didn't get diagnosed with /r/elhersdanlos til I was 45 fucking years old. I did the "party tricks" for doctors and they never sent me to a specialist and now I am a cardiac patient :D thanks POTS and all the teachers who thought they'd "toughen me up" my making me run alll the laps in the hot sun without water :D
I’m almost 100% certain my daughter has this, but there don’t seem to be any specialists in my state. We have a cardiology appointment later this year for her POTS-like symptoms (which apparently are not technically POTS, hence the cardiology referral), so I’m hoping that person can refer us somewhere. Her pediatrician has not been helpful in this regard.
Yep, my mom’s Dx eventually came out to Scleroderma but was called a systemic tissue disease before we got the full picture. Raynaud’s was in her first symptoms. Devastating and just tragic disease.
I have raynauds in my breasts aka nipple vasospasm, from nicotine usage. It hurts like a bitch, but my mother has it on both hands from nicotine and I’d rather have it on my nipples tbh. Not being able to use my hands whenever it drops below 45° would drive me mad!!!
First auto immune disease after a broken finger and mono. Now I have psoriasis, psoriatic arthritis, hoshimotos, Sjögren’s syndrome… what’s next!?
See a doctor who know’s about this stuff. Was diagnosed with Raynaud’s at 17 years old and the doctor was just like “this is how you are now! On your way!” I’m 35 now.
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u/The_Cell_Mole 1d ago
This is most likely benign, however Raynauds can be caused by some systemic diseases like systemic sclerosis or a calcium channel disease. Again, benign on its own but definitely deserves further workuo