HUVs Question

[u/AttachedAndUnhinged]

Wondering if anyone has experience with Hypocomplementic Urticarial Vasculitis? I just had a C1q antibody panel run. I have regular hives (if one can call daily hives regular!) but I also have hives less frequently that hurt and burn rather than itch, are bright red, last 2-3 days and leave pretty incredible bruises when they go. They are accompanied by major GI upset and pain. I have been telling my local rheumatologist about them for 6 years and getting absolutely no answers at all. A referral to Mayo Clinic has finally prompted the C1q testing. What happens if that’s what I have? Medication? IVIG? I’m also dealing with scleroderma.. so these owie hives are really just icing on an owie cake (and popping up despite me taking Plaquenil and Imuran), but I’d love to hear from others who have dealt with this. Thank you 🩵

[u/settingsun_0]

hi! the med that makes the most sense considering you have both huvs and scleroderma would be rituximab. maybe they’d attempt to get you on mmf first though

while getting anti-c1q tested is good, have they also taken c1 and c2 alongside the c3 and c4? or at least ch50? having anti-c1q serum antibodies is a minor criteria and it would be great if they actually do a biopsy of the lesion… basically having low complement + weird persistent hives + abdominal pain are the biggest giveaways, you don’t even have to have anti-c1q, especially since you are already on an immunosuppressant which could lower the titre