Chronic hives (uticaria)

Thank you jnb. Good information for me.

Trying to reactivate this discussion…I’d love to find a doc in/near Philly with an interest in chronic urticaria. I made an appt with Allergy and Immunology at Penn in May, but none seemed to have special focus on it. Any great docs with interest from this area?

Background: I had a 6 month bout of urticaria 12 years ago for 6 months. They came and went for no apparent reason. After about 6 weeks during which I went to ER, saw a PMD and dermatologist, I saw an immunologist who diagnosed me with autoimmune hives with the serum skin test. That episode was bad with nocturnal angry, burning red hives that would subside during day. It was awful. I was treated with the standard protocol of large doses of antihistamines (little help) and a couple short courses of prednisone (cleared me). Zolair was in trials. This episode, which I’m guessing is chronic hives, started when I had a sinus infection and so far is milder with fewer hives and much less angry skin, though my skin is very sensitive and I get intensely itchy spots and have had a couple nights with eye swelling. The hives come earlier-6-8 pm and fade next morning. It seems to be slowly worsening (started end of Nov). I’m on Zyrtec for allergies-added one- and restarted Pepcid. I take doxylamine 1/2 at night for sleep and allergies.

Any advice, esp with doc rec? I’m thinking I might see my fairly new primary just to get documentation that I’m taking antihistamines. I think if it worsens and I need zolair, they require time on antihistamines. Is that correct? I’m also hoping she’ll check Vit D level.

Yuck on uticaria
Hives started in 2018. Diagnosed through biopsy.

I’ve been on Xolair since 2020. I have had maybe 4 really bad breakouts since, and if that happens I take a low dose, 5 mg., of prednisone, usually just for a week.

Otherwise the allergist tells me to take antihistamines daily. Sometimes I do, sometimes I don’t 😂. when I have mild breakouts I do take them, in addition to the Xolair. the Xolair is monthly. not fond of those trips monthly but it’s better than the big breakouts. those are horrible.

If things get bad (not too often,) but not bad enough for the prednisone, I take two allergra in the a.m. and a zyrtec at night. The zyrtec makes me sleepy so I try to avoid that.

i found found help with pepcid, also, when I have a breakout. even with the xolair i get mild breakouts. gratefully mild enough that it doesn’t interfere in my sleep. some of mine come on if I wear tight clothing for too long, so I get out of my workout tights as soon as possible after working out. heat can bring them on, also.

Ice packs work wonders for the itch! Over the counter tecnu Calagel helps with the itch, also. I have many prescription topicals but I’m not really sure they help that much.

feel free to private message me if there is something I have missed. i am in California so that will not help you, doctor wise, good luck! i know how bad those things are

Thank you for sharing what works for you! It’s helpful information.

I have struggled with medication onset head to toe uticaria since 2019. I finally have relief by taking two fexofenadine (Allegra) 180 mg in the AM and one in the PM. I cleared this dose with my cardiologist before starting so I suggest that everyone do the same before trying.

Here are the guidelines. It sounds like updated ones will come out in 2026. I’m just sharing resources for people who may be searching forum.
I’ll add more as I find them.
https://pubmed.ncbi.nlm.nih.gov/34536239/

Here’s another helpful read by a leading urticaria expert in Germany. It’s more basic and geared to patients.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10796664/

I developed this in 2018 as well and I'm using all the meds you are. Your symptoms and outbreaks sound just like mine. For the first couple of years nothing touched it. I use 600mg Xolair/month, Triamcinolone cream and the rest..hydroxyzine, allegra, ice packs directly on my skin, etc and nothing worked. As of 2 years ago, my outbreaks are less often and much less severe, so now those meds sorta help but once a year, January, the worst outbreak occurs and nothing touches it again. I wish I had better info but it doesn't exist to my knowledge. It sounds like we're all doing the same thing with the same lackluster results.

Wow, same year as me, too! I;m on maximum dose xolair, 3 shots 😂 every 28 days oh, i was told about prilosec, that’s what kaiser uses, and that’s been helpful! seems to get rid of the hives quicker so i take that daily for them to leave quicker. my allergist says it doesn’t work, i beg to differ but he doesn’t want to hear it.

Have they thought about cyclosporine? . It’s sometimes recommended after zolair failure and some people get long remissions. It has to be monitored closely though.
Dapsone has also been used with success in some patients. The International guidelines have the drugs used in section 5.4. It would give you something to ask doc about. I wish you luck!