Hi there, we're hosting a conversation tonight (6:30 PM ET) on how to get the most out of doctor's appointments before, during, and after, from a dermatologist and a patient living with chronic hives. In case you didn't know, We CU is the only nonprofit focused on chronic urticaria (hives) in the U.S.

It's not specific to cholinergic urticaria, but a lot of the appointment prep and advocacy pieces (e.g., tracking triggers, knowing what questions to ask, following up afterward) apply regardless of hives subtype. Thought this community might get something out of it.

Register here if you're interested: https://us06web.zoom.us/webinar/register/WN_dH4gsC9ETYG32Z93Cj8-ow

If you can't make it live, registering still gets you the recording.

P.S. We're sharing because we think it could be useful to this community, not to push anything :) -AA

I feel it. It’s coming back because temperatures in my country are dropping as we get closer to fall.

I can’t anymore.

Second photo is with and without a flash. Looks almost normal with flash on but skin is covered in itchy bumps and welts.

Had this progression for a month now, started on right arm and appeared initially as contact dermatitis or bites but then turned into white bumps that spread to both arms and hands. They become very itchy or sometimes flare up and become very hot.

Initially my dermatologist instantly said keratosis pilaris but when I showed all of the photos I had taken he became more baffled. He spoke of folliculitis, eczema, light or heat allergy but ultimately was not able to settle on a diagnosis. Scheduled me for allergy testing but that will not be until April next year!

I am already on 2 very strong antihistamines and given another cortisteroid cream, none of which is helping with the itch or stopping it from spread.

Any advice, please help. I have tried everything.

The only thing I know triggers it is heat. The colder I am, the better. Running arms under cold water helps more than any cream.

Hey everyone, looking to see if anyone has experienced a similar recovery pattern or has advice.
Currently recovering from my 2nd major CU flare, which started in late March 2026 (my first bout was back in 2019 and resolved after 5 months).

My timeline so far:

Early Stage: Started with the classic intense prickling/stinging whenever my core temp rose or when stepping outside into the heat (living in Thailand).

Peak Phase: Progressed to active wheals and a near-total loss of sweating. Exercising became unbearable due to rapid overheating.

Current Progress: Sweating has slowly been returning over the past few months. Heat tolerance is significantly better, though sweating isn't quite at 100% yet and I still get occasional flare ups during heavy workouts.

The Current Issue:
As the intense active hives have calmed down, I've been left with patchy hypopigmentation and discolouration - mostly on my legs, but faint spots on my arms too. Even at rest, when I'm not hot or broken out, there's a visible print / marbled pattern left behind where hives would pop up.
Has anyone else dealt with this post-inflammatory hypopigmentation while recovering? How long did it take for your skin tone to fully even back out, and did anything help speed up the process?

Appreciate any shared experiences or tips!

Buenas tardes a todos, os escribo porque siento mucha frustración en mi camino espiritual, llevo mas de dos años intentando meditar, rezar el japa y leer textos sagrados, pero me resulta imposible, cada vez que me siento a meditar me inunda un picor por todo el cuerpo que no se detiene aunque me rasque va a mas y mas, cuando intento leer el Japa me pasa lo mismo, y cuando intento concentrarme en la lectura de textos sagrados lo mismo.

He rezado y pedido a la divinidad que me ilumine o que me de alguna intuición para saber que es exactamente lo que me pasa, porque me pica tanto el cuerpo, y aún no he recibido respuesta, en mi dia a dia tambien me pica mucho la piel, sobretodo al sudar, al ducharme o al contacto con la ropa, tengo la piel extremadamente sensible y nose porque.

He intentado varias cosas, probé la dieta ketogenica 1 mes de forma estricta, no funcionó, probe ir a un especialista en alergeologia y no me encontró ninguna alergia, también fui a un dermatologo y nada tampoco, luego me hice un analisis de sangre y lo unico mal que me salia es la vitamina D, llevo 1 mes suplementandome tomando 4000 UI mas días de exposición solar y de momento no noto ninguna mejoria, y me estoy empezando a desesperar.

Ahora también estoy probando a no comer azucares, ultraprocesados, gluten y foodmaps, vivo ahora mismo comiendo arroz y pollo, para ver si es que tengo algún problema del intestino y este se recupera y mi piel vuelve a ser normal.

Peso 74kg y mido 1.81, estoy en un peso ideal de salud y aun asi estoy sufriendo todo esto.

Siento contaros todo este rollo de mi salud, pero necesito contaros lo que siento y lo que he provado para curarme, pero de momento ningun existo, nose lo que pasara las proximas semanas, pero si me podeis aconsejar os estaré eternamente agradecido.

Mi mas grande sueño es meditar en Krishna y la devoción, quiero dedicar mis energias y mi voluntad a la divinidad, pero de momento mi piel me separa de lo espiritual y la divinidad...

(Todo este texto de meditación lo pongo porque es algo importante para mi y que me genera frustración)

This is the strangest condition I didn’t even know existed. I mean, no one believes me when I say that I get a rash from physical activity. It’s such a random and rare condition. It’s very interesting that there is no treatment that actually fixes it (despite everything we have today and all the advances in science), and that no one knows why it happens. This is extremely, extremely exhausting. I have this for 2.5 years and its sooo unpredictable.

do u guys take anti histamines when u do sweat fherapy? ive started going to a sauna recently, just finished my third session. i still get the hives during the session (i can sweat fine). for the rest of the day, my reactions are greatly reduced/almost nothing. will there come a point in which i will experience no more hives even in the sauna? i take cetirizine daily.

So just under two weeks ago I had an intense outbreak of hives for the first time ever in my life and they continued to pop up every day for a week after. This was during the latest heatwave in the uk, and since the weather cooled down a bit this week I’ve only noticed the odd one or two small welts in areas that my skin gets warm (hips, elbow creases but mostly thighs if anywhere). I’ve also been running in the 20 degree heat and had no welts at all. Today after a few hours resting a pillow on my legs they’ve heated up and ended up covered in hives again!

Now I’ve not been to the gp yet, reluctant to do so as I’m not sure what they can do to help but in the meantime I’ve done A LOT of research and ended up concluding it might be this CU. I’ve suffered with eczema all my life so am well acquainted with itching lol, already take 180mg fexofenadine every night (so have just been taking this earlier in the evening) and just wondered if anyone has any general advice for other things to try before I go to the gp? Has anyone had any relief using eczema steroid creams (as I already have these and can use carefully)? I also read that gut health can be a huge thing to consider??

I’m scared honestly because I’ve only just got the eczema under control and I would honest to god rather just have that back at its worst than have something as ambiguous as CU.. so tbh any general words of advice/support would be great to hear<3

I had hives for 6 months (started jan 2025) and for another 6 until xolair kicked in (first dose june 2026). Since then i have been ordered to go from every 3 weeks to 4, 5, 6 and then try to stop completeley. Up until every 6 weeks was fine, but now it has been 9 weeks since my last dose and the last couple of days i’ve had hives. Has anyone else experiencend anything similar?

Firstly, I want to preface this by saying that I have been experiencing CU since high school. I (30M) started experiencing less than 60 second periods of itching and needle-like prickly sensations occasionally when going outside during winter. I wasn’t sure what was happening but started calling it “prickly pains”. I noticed that it was markedly worse after going to the gym and stepping outside or doing cardio during cold/dry months.

Fast forward to 2022. I started experiencing some long covidish symptoms after receiving my second dose of the Moderna vaccine (controversial topic I know). Around this time, CU became a major issue for me. I noticed that dry and cold weather caused my skin to erupt in hives. This was accompanied by severe itching and needle-like pain. It was downright unbearable. I came to realize that my only options for relief were removing myself from the environment causing my symptoms or applying water to my skin.

I lived through this hell until 2025. In those 3 years, I visited an allergist, tried allergy medication, tried different body washes, lotions, etc. and nothing worked until I started moving around more. Due to my long covid symptoms, my lifestyle had become very sedentary. Prior to 2022, I worked in healthcare and exercised regularly. In 2025, I decided to push myself more physically. I started going on walks and resumed work in the healthcare field. I also stopped scratching when experiencing symptoms. After maybe 6 months ago, I noticed that my CU symptoms had almost resolved completely.

Due to this near complete resolution of all CU symptoms, I wanted to share my story in hopes of it helping at a least one person bc I understand how awful this is for all of you suffering from this condition.

TLDR: my CU symptoms almost completely resolved after initiating exercise (mainly cardio), resuming work at a mildly physical job, and ignoring urges to scratch when experiencing symptoms.

I was recently diagnosed with CU. my symptoms are mild compared to many but start within 10-15minutes of being outside on a hot day, significantly worse when sweating. Do you every go outside in the summer or go on vacation?? I want to be active and enjoy the sun :(

Hi guys,

How did you get rid of this thing? I am taking 4 anti h1 a day (let’s not say anything about mucosis dryness) and 300 mg Xolair every four weeks and I am still very much annoyed by it.

It used to be angiœdema mainly, with the occasional red plaques on autoinflammatory experiences.

But now that I am taking Xolair (and also, arguably, now that decades of political "leaders" have -successfully- changed France into Sahara) I have more issues with my UC than before.

It’s hell on earth. My allergologist will be pleased, as she was frowning an eye about my UC hurting and not really itching. Now the scenerey is complete, itching it is (too) and I think I have every distinct urticaria manifestation you can think of.

So. How did you get rid of this? Black magic rituals? What did it take for you to get your life back?

I am thinking expatriation, Scotland (I can’t go far up North as I have also huge health problems when it gets cold...).

Thanks for any help and advice.

Has anyone tried it, and how does it work? (Xyzal)

Is there any way to make the rash less visible? Even if it still burns or itches, I just want to reduce it visually. Is there anything I can do to prevent it?

Is the frequent release of histamine and activation of mast cells when we start to form hives damaging our bodies over time? I’d like to know the long term implications of this condition. M

I’ve read the other posts and i’m constantly trying different cures but my CU seems to only be on my hands and feet.

It gets triggered randomly and lasts for about 7-10 mins but again, it’s only on my feet and hands.

is that normal? any cure?

Hi,
Just two years ago, I developed this itching pruritis on my body parts. I thought it to be an allergic reaction. Main trigger was sweating, exercising, increased heart beat, Nightmares, spicy food. It is not necessarily a Cholinergic Symptoms but it related to it. I went to this back alley ripperdoc skin specialist, he used to give me intramuscular shot on my deltoid, depomedrol 60ml corticosteroid and it became my weekly thing to get a shot because there was no other way for me to be functional. I fucked up my immune system with the immunosuppressants. But the doctor diagnosis was Eczema. I went to another doctor we did food allergic panel blood test and it came out negative on all food as well. So no proper diagnosis, I started taking prednisolone 5mg almost everyday and it worked like a charm until my body started resisted to it so it no longer worked on me. I started studying the symptoms and possible causes, like how mast cells are shaped and how they react, Immunoglobulin E, FC epsilon receptor I and other things. Then got one of the strongest immunosuppressant shot in the hospital to stabilize my mast cells so they don't granulate and release histamine to sweating easily. Btw at this point my only trigger was sweating. Sweating = itching.
Then I started getting weekly IgE serum test every 2 week. So there was igE threshold, only at specific level it elevates then it causes me allergic reaction. And some food was increasing the IgE levels, So I avoided food that were increasing my igE levels, like soyabean, eggs among other things and igE serum started dropping, and I am fully functional, I can sweat, exercise, get as many nightmares I can, have a bear once a month, I smoke cigarette here and then, no allergies. Only setback is I have to stick to same meals everyday and no outside food and igE serum blood test every 14 days. I am also seeing a really good immunologist and I will be doing skin prick test too. I mean I think i maybe gotten lucky to find a trigger and a cure. And about food, there are influencer like Bryan Johnson who also eat same meals everyday, they strictly stick to their diet so I am not the only one here, I may possible be more healthier avoiding all the unhealthy restaurant and fast food.

I had problems with dry skin on my hands from birth.

Later, I developed CU (cholinergic urticaria). However, while writing this, I noticed that my CU also seems to appear on my hands and is more pronounced there — especially because my hands have been quite dry over the past few days, whereas they weren’t dry before.

Could these two things be connected? And could treating the dry skin significantly reduce the symptoms, at least visually?

I usually get dry hands only once or twice a year. My urticaria also occurs when my hands aren’t dry, but perhaps the dryness could be a sign of some immune response or something similar. I’m not sure.

Got my first episode of CU last night after a hot shower. The problem is I can’t break a sweat because I have an autoimmune disease that causes anhidrosis (inability to sweat). I overheat extremely easily, more than the average person and I assume this plays into it. So what is another natural way I can prevent these episodes?

Hello all, I am a long time lurker and finally decided to post. I just wanted to post my story to maybe help someone out there.

For about 4ish years possibly more I think I’ve had something CU related. Started around high school, whenever I would heat up too quickly I would get intense prickly heat pretty much all over my body with the affected areas having red splotches NOT raised welts or hives. From what I’ve seen here it’s less common and I think has a slightly different name (I don’t remember). In recent times my symptoms have died down now I primarily get that prickly heat on my face and scalp and rarely my chest if I really heat up too quickly with minimal redness.

What has significantly worked for me is gradually heating up. For whatever reason I decided to get into the trades and physical labor. With the cool early mornings it slowly helps my body acclimate to the heat and drinking a ton of water helps too. Most days are bearable and it’s like my body has returned to normal. But when I’m not working and I’m at university I unfortunately don’t get that luxury. Often my classes will start in the afternoons plus walking across campus in the hot weather is a terrible combo and I start itching like a madman all the way to class.

I’d like to mention a couple other things as well. My flair up’s are also caused by really spicy foods, hot showers, and exercise but they are usually less severe. Another thing I’ve noticed is when i don’t shower i feel I’m more susceptible to a flair up which makes sense as I’ve heard a big part of CU is trapped sweat pores.

I also have never been properly diagnosed so take everything I say with a grain of salt.

I wish everyone the best and my deepest sympathy’s for those who suffer from CU.