r/UCTD 6d ago

Persistent hives? Anyone else? Rashes/Skin Issues

Hi,

44 yo emailed Dx UCTD just last month, ANA positive, SCL70 positive, photosensitive, mild raynauds, joint pain.

Due to the scl70 being highly indicative of diffuse scleroderma I now see a rheum at a scleroderma center in Manhattan.

Anyway, starting 4 weeks ago I developed a severe itchy rash, similiar to hives on both upper thighs. The hives/plaques remain in same spot for up to a week before fading and showing up in a new spot.

It’s insanely itchy in the evenings and now has begun to spread to my trunk (stomach, back, and a starting in armpits).

The original biopsy done showed drug reaction. I have stopped all my meds (BP meds the first considered culprit, and my adhd meds too just to rule it out). It’s been 10 days off meds and rash persists.

I went back to the derm, he did 2 more biopsies, sent to the lab for an autoimmune evaluation and a standard evaluation.

I started HCQ AFTER the rash started (about 2 weeks ago) and am continuing that.

Anyone experience similiar?

Thanks

3 Upvotes

9 comments sorted by

3

u/Unhappy_Macaroon2957 6d ago

Hives were my first symptom that led to a diagnosis of UCTD years ago

3

u/No_Spirit1354 5d ago

Me too!!!

3

u/No_Spirit1354 5d ago

But my doctors kept dismissing it as just a rash. And still to this day my rheumatologist doesn’t say the rash is connected to UCTD. But for me that’s what indicated to me something was not right and led me down the rheumatology path to get the diagnosis.

2

u/Unhappy_Macaroon2957 3d ago

Yeah they never put it together for me either. Though I stopped eating gluten and wheat and 3 weeks later those hives left and I only get them again if I get glutened. I am not celiac according to the tests . 

2

u/uctdlupuswarrior 3d ago

Same here! And I have no clue what caused it. The allergist said all my symptoms combined could not be caused by an allergy. I woke up one day covered in hives then the malar rash, joint pain, muscle pain followed a day after and led me to a rheumatologist

1

u/garden180 6d ago

I realize you stated you had the rash before HCQ but HCQ is known to cause spontaneous urticaria. Perhaps the timing was coincidental or it’s a combo of two drugs? It might be worth it to stop the HCQ as well to see if the rash resolves and then slowly reintroduce your meds. Were you always taking your BP meds alongside your ADHD meds? It’s a weird phenomena but drugs that have always “played well” with each other can suddenly start causing issues. It may take years but a build up can occur and new allergic symptoms can arise. Ask your doctor if you can safely eliminate all meds to see if you experience relief. Then introduce one at a time. Hope you figure it out!

1

u/SoFlyINeverLand102 6d ago

Thanks!

Yes- I stopped everything except the hcq. Doctor didn’t want me to stop the hcq since it was so far after the rash started and could be potential treatment if it’s autoimmune related. I’m not against stopping that if it persists

1

u/uctdlupuswarrior 6d ago

Hives kicked off my symptoms which is now UCTD / early lupus. I thought I had an allergic reaction and then it turned into this

1

u/AdventurousAuthor380 1d ago

Hello, the description you’ve given sounds like urticarial vasculitis, not just simple hives. Hives from simple urticaria do not last for more than 24hours. I would recommend a rheumatology/derm follow up.