r/urticaria

If you’re like me, you’re tired of sweating just to get a little relief.

Tired of using exercise as a treatment because it’s the only thing that quiets it temporarily.

And tired of hearing “try higher dose antihistamines” when you already know it doesn’t work for you.

I’m not a doctor — just a patient who’s tired of being told “we don’t know why this happens”.

So I spent the last few weeks digging through papers and talking to people who research sweat glands, mast cells, and nerves. I put together a 5-page proposal that breaks CU into 18 different pathways that can all end up looking the same on your skin.

*The idea is simple:*

Different people probably get CU for different reasons. One person’s trigger might be ATP release from sweat, another’s might be nerve hypersensitivity, another’s might be an autoimmune attack on sweat glands.

But right now we’re all lumped into “cholinergic urticaria” and given the same drugs. No wonder so many of us don’t respond.

I’ve put a 4-page version with references and a pathway diagram in the link below if it’s helpful for researchers.

https://drive.google.com/file/d/1TksVTB465Pqz2OEObyDi3f0D50d-0h_C/view?usp=drivesdk

*What’s inside, super short:*

- *10 core subtypes* we can test for today: sweat allergy, nerve issues, small fiber neuropathy, autonomic problems, etc.

- *8 upstream angles* no one’s really looking at yet: purinergic signaling, metabolic stress in mast cells, neurogenic peptides, skin immune niches.

- *For each one*: what it looks like, how you’d test it, and what a curative treatment could target.

There’s a 1-page table on page 1 if you just want the overview.

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*Why I’m posting this here:*

Because if researchers see this, maybe someone will run a small pilot. And if one pilot works, it changes everything for a subset of us.

I’m not asking for money, I’m not selling anything. I just want this to get in front of people who can actually test these ideas. If you know someone in dermatology, neuroimmunology, or mast cell research — send it to them.

If you’re a researcher and you see a mistake or a missing angle, please tell me. I’ll update the doc.

And if you read it and think “oh, that’s me” — that’s the whole point. We’re not all the same.

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Thanks for reading. I know most of us are exhausted from trying to explain this to doctors. Maybe this helps explain it for us.

Buenos dias, tardes o noches tal como dice el titulo es mi pregunta.

Llevo ya casi 1 año con urticaria inducida por ejercicio, movimiento, calor y posiblemente sudoración todo empezo un día que al seguir mi rutina normal de ejercicio aparecieron mi nuevo "camuflaje rojo" por toda la piel. Al principio pense que podia deberse por una reacción alérgica.. error nunca paro.. por eso desde que camino aunque sea una esquina o mi cuerpo siente estres fisico reacciona.

Toda mi vida no pude hacer ejercicio por otras enfermedades y condiciones que tengo que me lo impedían y cuando al fin pude mi motivación estaba al tope pero gracias a esto tuve que dejarlo..

Tomo rupatadina 2 al dia y 4 cuando hay brotes (q es casi todos los días).. nada funciona he intentado volver aunque sea hacer cardio y al entrar en calor me convierto en la antorcha humana de las ronchas.. he intentado hacer ejercicio con y sin rupatadina el resultado es el mismo..

Ustedes han logrado hacer ejercicio a pesar de esta condición? O debo posponerlo hasta conseguir xolair?

Eso gracias

Has anyone here been able to successfully taper off Xolair without needing to stay on it long term? If so how many doses did you end up tapering down from before stopping?

I’m starting Xolair for the first time and I’m wondering whether this is something I’ll likely need longterm or if some people are eventually able to come off of it. Would love to hear some success stories

Hi everyone,

quick intro: I'm M33, diagnosed with chronic idiopathic urticaria (CIU) back in 2007. Back then, I went through the absolute ringer with doctors—GPs, TCM, homeopathy, elimination diets, and every antihistamine under the sun. I was even part of one of the early Xolair clinical trials at LMU Munich around 2010–2012, but it didn't work for me. Eventually, I just accepted my fate, and after a few years, the hives subsided to a manageable level.

Unfortunately, they flared up again about three years ago. I've been back in treatment with urticaria specialists at the Uniklinik in Frankfurt. We retried various antihistamines and Xolair, but again, no luck. Currently, I'm on a combination of Cyclosporine (300 mg daily), Rupatadine (40 mg daily), and Montelukast (20 mg daily). This regimen manages to reduce my hives by about 60% to 80%.

Because of this, I've been closely following the press releases for Rhapsido. I have high hopes that it can achieve what nothing else has: near-total symptom relief. From what I understand, Rhapsido received EU approval in April of this year. However, when I reached out to several pharmacies and pharmaceutical wholesalers in Germany, none of them were able to order it yet. My doctor promised to prescribe it as soon as it's available, but no one seems to know when that will actually be.

I'm curious if anyone else in Germany or the EU is in a similar boat, waiting on Rhapsido, or if anyone has more inside intel on the actual release timeline.

Stay strong, everyone!

How? It looks like it's like 30k per yr for Xolair, and like $4,500 for a bottle of Rhapsido. UNH won't even cover my allergist except for office visits until I reach deductible.

I’ve been in this page for coming on close to a year now and with out a doubt I see almost every day, posts in similarity to previous posts or questions being asked that have already been answered.

I highly suggest searching the thread before posting the same story that’s been posted a hundred times. Sure I understand not everybody is the same; but the answers will almost always lead to the same conclusion.

Just food for thought, as someone who spends a lot of time commenting and trying to assist others; it’s hard for me to want to continue to do so, when those asking for help won’t take a little bit of their own time and read through old threads.

That’s my TED talk, I’m sure I’ll rub a couple people the wrong way but I mean cmmon.

Hey guys, i’ve been struggling with spontaneous urticaria (which i’m not even sure is what I have) for the past 3 months as well as random pustules appearing on my face, hands, and neck from an allergic reaction to Lamictal. Now before 3 months ago my life was ok? I’ve always been an “allergic” person as a chronic asthmatic and severe eczema haver but I suddenly went into anaphylaxis about 3 months ago and had to go to the emergency room to get an epi pen. Which is where everything originally started, I ate cheese my mouth got itchy and my asthma started up as well as hives all over my body. Get this, i’m not allergic to any milk derived products and never have been.After the reaction I had to recover from getting the epi pen at the hospital (body pains chills) for a week. My body has not been the same since!! I went to an allergist and im literally not fucking allergic to ANYTHING. I used to be allergic to shellfish but i’m not anymore, not allergic to specific milks or cheese like goat cheese or stuff like eggs or wheat and that’s when I was diagnosed with spontaneous urticaria. I asked if it could be mcas but I was told the treatment was the same, zyrtec everyday so it shouldn’t matter if i get the diagnosed or not. But like why would it be spontaneous urticaria if I suddenly had anaphylaxis for absolutely no reason. Anyways fast forward to a month ago, I started a new medication for my recent bipolar diagnosis and every thing was going fine till I had a reaction to it, pustules all over my face and incredibly bad hives and rosacea. Was put on prednisone for it. I stopped taking the meds, a month later and I have been on prednisone off and on again and each and every time i’m off I start getting hives/pustules or theses itchy pimply things for absolutely no reason. The medication is out of my system and i’m starting to think it’s an internal problem and was never the medication in the first place. I am not going back on prednisone and doctors have no idea what’s wrong with me. Have any of you guys had similar experience with skin? I also have been told to always have epipens on hand just in case i have another random reaction.

Sorry for the long post!!!
I’m writing here purely out of desperation and to hear everyone else’s fix to urticaria!

On a Sunday afternoon I arrived back in the UK from Turkey. I spent a week all inclusive with some questionable time on the toilet which I pinned down to alcohol and all inclusive buffet… maybe even brushing my teeth with the tap water but we were told this was fine as it is safe as long as we’re not drinking it in volume.

On the Tuesday after arriving home I had the worst chest / sinus cold&flu I have ever had. I slept sat up in bed, my cough was like a dog bark, I felt floored!

On Wednesday I decided to research ways to kill cold and flu fast and learnt that raw garlic chopped releases allicin which can inhibit colds & histamines causing illness. So I quartered an organic raw garlic clove and swallowed it!

On Thursday morning my cold and flu was completely gone, I was ready to go back to work!

On a Thursday evening, I started with hives on my wrists, I have had hives before so got my fiancé to bring antihistamines home as this usually helps. I am only known to be allergic to sudafed so I don’t take it. I took citrizine and went to sleep.

On Friday morning I woke up with more itching on my wrists but it wasn’t too bad so I went to work my 13 hour shift on A&E. By 7pm one of my colleagues looked at me and said I look terrible, they prompted a doctor to look at me. By this time the rash was all over my body, my lips were extremely swollen and my eyes. The doctor admitted me, cannulated me and gave me hydrocortisone IV. Sent me home with prednisolone as I had to be back at work the following day at 7am so I insisted I needed to sleep at home and the hydrocortisone seemed to get rid of the swelling.

On Saturday morning at 5am I woke up in very intense pain, my whole body was red and swollen, my face was huge I was dry heaving over the toilet and crying. My fiancé drove me to A&E where my HR was 150 so they did and ECG and cannulated me again. I was given hydrocortisone, chloraphenamine, 1 litre sodium chloride all IV. This seemed to help slightly but I left later that afternoon still slightly puffy.

Because of the hydrocortisone I was told not to start my oral steroids at home until the next morning. So on Saturday afternoon after discharge from the hospital, I went home for a nap and woke up again covered in hives! I went straight back to A&E and ended up spending the night until Sunday morning. That overnight stay I had hydrocortisone, chloraphenamine, citrizine, prednisolone, and then a morning dose of prednisolone before leaving.

This comes to Sunday morning, at home, itching, suffering still, waiting for Monday morning to call the gp for a referral to immunology as instructed. I saw the GP on Monday afternoon and I have been referred to immunology but they have a target to review within 18 weeks. I can’t cope with the sleepless itchy nights with a high heart rate and also a job I need to keep! I have to add that upon my last discharge my LFT’s were elevated probably due to all the medical intervention and inflammation, and my potassium on the cusp of being too low.

I am keen to hear if anyone else has managed to relieve reoccurring urticaria at home, was it the garlic? Maybe I picked something up abroad? Also to add I do now have 2 Epi-pens at home that I was given on my first admission on Friday evening. Thanks for reading!

My wife and I found out in 2023 that she was pregnant, and around week 7 she developed hives all over her body. At the week 8 scan, her OB told us that the fetus had stopped growing sometime between weeks 6 and 7. We assumed the hives may have been related to hormonal changes.

In 2024, she became pregnant again and successfully delivered our baby without experiencing any hives during the pregnancy.

Now, in 2026, she is pregnant again, and at week 6 she has developed hives once more. Do you think this could again indicate an early pregnancy loss? We are going for an HCG test tomorrow.

Bpc157 seems like it may have helped my urticaria, recently ran out and had a major flare up after a month of mostly clear. Anyone else tried this or any other anti inflammatory peptides?