r/CholinergicUrticaria

been going through this disease for like 2 years now its getting worse every year last year I had month or two symptoms free in summers but this year I could feel everything everyday tho i don’t have that palm and foot itching which happens in slight increase of temp. I did enjoyed the summers when out on running, did some trips the pain was 4-5 mins max and then i was free like a bird. From last week the temp has dropped in india it’s starting to rain, i started a side business aswell I cook and stuff it’s starting to get pretty uncomfortable to do that I have night job too. I was always a dreamer but lately I’m getting scared. Seeing people going through years scares me this winter scared me..i don’t know how am going to do what I wanna do. I don’t come from rich family I have lot of responsibilities and pressures.
Its stupid, I have started smoking drinking I don’t wanna die but i feel if life is going to like having it smaller is good. I do have a idea how i develop this thing I was going at a very bad phase in life, anxiety attacks and all. I can’t date anyone anymore aswell last i dated was 10years ago..I realised that with all this things i get dependent on a person very easily, i no longer have a sense of true feeling that’s why I avoid people and sharing. I have seen many people walk away from me or changed and I know i won’t be able to take that as that ease and comfort like this is unreal dream for me, I can’t be dependent to anyone.
I have tried all oral medicine, immune suppresser but nothing helps. Xolair and rhapsido thing is not available in india under insurance and paying this much for whole life is not possible lmao.
It’s not about the disease anymore, it’s just feel useless, lost, sad about everything anymore idc.
I hate weekends too….

Summer is actually so depressing for those of us suffering from this condition… not only because you can barley step outside without feeling like a vampire in direct sunlight but also just watching people be able to go outside and enjoy summer activities and enjoy the weather, it’s so depressing just watching the world pass you by in the summertime and there’s nothing you can do about it.

For context I have had cholinergic urticaria for 2 years now. Starting late 2024 summer and have had it since. I’ve tried everything from regular OTC anti histamines to xolair to dupixent to sweat therapy to taking every vitamin known to man. Everything. Recently I just got on rhapsido and it’s been 4 days and I have been 95-99% cured. There is some slight tingling and itching but I don’t have any more hives and the itching lasts maybe 1 minute vs 30 minutes. Rhapsido doesn’t target IGE or IL like the other medications, it targets the BTK which causes histamine and other stuff to release. I urge everyone to try this medicine out!

Hi everyone,

Has anyone here tried propranolol for cholinergic (or adrenergic of aquagenic) urticaria? If so, did it help? What dose did you take, and what was your experience?

Table 1 Characteristics of included case-series on usages of β-blockers in adrenergic and cholinergic induced urticaria and/or pruritus: https://link.springer.com/article/10.1007/s12016-026-09175-1/tables/1

Hi everyone,
I’m posting here again because I’ve been dealing with chronic urticaria (chronic hives) since the beginning of April. Throughout May, I was taking prednisone, bilastine, and montelukast. The prednisone helped calm down the hives, but I was still getting some, and at the beginning I was having pretty bad flare-ups.
After that, I stopped prednisone for about 2 weeks, and it was honestly awful. Since I had to travel, I started taking prednisone again but at a lower dose (around 10 mg), and that helped too.
More recently, I started taking 20 mg of Xyzal (levocetirizine) along with 20 mg of Pepcid (famotidine). For about 2 days, I barely had any hives at all. However, I stopped prednisone on Sunday, and now both yesterday and today I woke up with swollen hands and hives all over my body again.
Does anyone have any remedies or suggestions? Anything that has helped you manage this?

Thank you

Hello everyone

I have been dealing with cholenergic urticariz for 4 years now from 14-18 (still suffering)

Pls how long urs had lasted ;-;

Hi everyone,

I'm looking for advice because I'm trying to understand what's happening to me.

I moved from West Africa to Quebec about 3 months ago, and shortly after arriving I started experiencing something I've never had before.

Whenever my body temperature rises (walking to work, exercising, being in the sun, or even when I'm a little stressed), I get an intense prickling / needle-like sensation all over my chest, back, and arms. It feels like thousands of tiny needles on my skin.

The sensation usually lasts around 3–5 minutes and then goes away.

The strange thing is that I don't get any visible hives or rash, just the prickling sensation.

I saw a doctor who thought it might be caused by very dry skin, since Quebec's climate is much drier than what I'm used to. I've been prescribed Uremol 20%, moisturizing creams, and a cleansing oil. I've been following the treatment, but so far I haven't noticed much improvement.

Since reading posts in this subreddit, I'm wondering if this could actually be cholinergic urticaria, even without visible hives.

I'm curious:

• Has anyone here experienced only prickling without any rash or hives?
• Did moving to a colder and much drier climate trigger your symptoms?
• If it turned out to be cholinergic urticaria, what helped you the most?

To be honest, it's been mentally difficult. The sensation is so unpleasant that I've even had moments where I thought, "Maybe I should just go back to my home country." I really hope I can figure this out and get my life back to normal.

Any advice or similar experiences would be greatly appreciated.

Thank you!

Hi everyone,

I'm a 20F and have been dealing with this for about 2 months. I'm really concerned.

It started after spending a sunny day outside in April. My face became extremely itchy when I got home. I assumed it was heat rash or a damaged skin barrier, so I switched to a gentle routine (Cetaphil cleanser + moisturizer + aloe vera). My forehead and nose peeled a lot (I had been using Zitcare on my nose for blackheads but stopped because it was making my skin dry). The peeling improved, but my skin was left looking shiny and unusually textured.

A few days later I went out in the sun again. My nose became bright red, my arms developed intense itching with tiny bumps/rough texture, and the next morning I woke up with significant facial swelling.

A dermatologist diagnosed irritant contact dermatitis and prescribed Zempred tablets, Momate ointment for flares, and Benpanthen Sensicalm. The swelling improved within 2 days, but every time I went out in the sun I would flare again, and Momate would calm it down.

A few weeks later I went on an afternoon train journey. My neck and arms became intensely itchy, and by the next morning my entire face was swollen again. The skin around my mouth and under my eyes became extremely dry and peeled so badly that it hurt to open my mouth. Cetirizine helped reduce the swelling but didn't completely resolve it.

I saw another dermatologist, who suspects ?urticaria + irritant contact dermatitis (ICD). She prescribed cetirizine, Physiogel moisturizer, vitamin D, and B-complex + zinc. Mostly the dermats are focusing on using sun protection- spf, umbrella, avoid going out during afternoon etc but I need a permanent fix for this coz I cant keep avoiding going out forever.

My biggest triggers seem to be:

Afternoon sun

Heat/sweating

Hot water

Standing near a stove/flame

Interestingly, I can tolerate early morning sunlight (6–7:30 AM) without any problems.

Has anyone experienced anything similar? Does this sound more like heat/cholinergic urticaria, solar urticaria, or dermatitis with urticaria? Did antihistamines help, and how long did it take to improve?

Thanks!

It started around November, and increasingly got worse, until 3 months ago it reached its peak.

I barely could get out of home, or even at home i would get it atleast 2 to 3 times a day (i dont know the term), i started taking cetrizine and it really did help, twice a day 10mg.

Until this month, i started taking less and less because i didnt feel the need, until i completely stopped BECAUSE I AM CURED FROM THIS FUCKING HELL.

i still get like the "sensation" of itching maybe a few times a day, but its not even close to how it was a month ago or even at its peak 3 months ago, i did not do anything particular, it just went away on its own, i am so happy, just wanted to share this with you guys

two months ago i made a post where i announced that i was going to overdose on vitamin d without knowing my levels and significantly overdosing over the recommended supplementation by 10000iu daily.
i took 10000 per day + at least 200ug k2 + at least 300mg magnesium. first i want to talk about my blood work. this week i went to a laboratory in cologne to get a health check because im lowkey a hypochondriac with cholinergic urticaria lol. i ticked almost all boxes i saw including vit d, heart, liver, kidney, magnesium, iron, cholesterol, basically ALOT.
today i got the result back and everything is OPTIMAL except my bilirubin which is elevated but i have gilberts syndrome so thats expected and not cause for concern (genetic condition ive had before CU and supplementation). also my iron slightly elevated but ive been supplementing so ill just cut down on that. i was extensively warned about renal failure and kidney stones. my kidney is in excellent shape. my vitamin d level is at 124 nmol which translates to ~50 ng/ml. thats excellent and not at all toxic. my heart according to the blood work is in excellent shape and my blood shows no signs of calcification.

just imagine how low my vitamin d levels were when two months of 10000iu (!!!) elevated it into the good range. ill cut down to 5000iu now daily as a maintenance dose i think.

as for my CU, its very less severe since i started this. it could be because of the high temperatures outside (some people dont have CU during summer) but i guess we'll see when winter comes (im scared). ill make another update i promise. Also maybe I Read something wrong in my blood work and im dying ?? :(

As an international student, I started experiencing symptoms of urticaria about two weeks after arriving in the UK. At first, I thought I was simply being too sensitive to my body because I felt itching all over. I assumed it would go away after some time, but it never did.

After about two months, I started visiting my GP. Unfortunately, I did not feel that much progress was being made. The symptoms continued for several months, and although I was prescribed antihistamines, they did not seem to help.

Things became much worse during the summer when the weather was particularly hot. I remember one day when I went out and could barely cope. Everywhere felt extremely hot, and I could not stay outside comfortably. I could not even return home immediately because the heat was overwhelming. When I eventually got home, I decided to exercise. Before then, I had learned that sweating might help reduce the symptoms, but exercising was difficult because sweating itself was very painful and uncomfortable.

That day, however, I felt so distressed and embarrassed by my condition that I forced myself to continue exercising until I started sweating. Surprisingly, once I had sweated, the pain and discomfort eased significantly. The following day, I did the same thing. I exercised and sweated again. Over time, as I continued doing this occasionally, the symptoms reduced dramatically.

Before I started getting better, the condition affected every aspect of my life. I lost my job because I was unable to work for several months. Looking back, those were some of the most difficult periods of my life. The constant itching, discomfort, and frustration took a significant toll on me physically, mentally, and financially.

Fortunately, things have improved a lot since then. I would say I am now about 80% better. The symptoms have not disappeared completely, but they are far more manageable than before. I can now carry out my daily activities, attend university, work, and generally live a normal life. From time to time, I still exercise specifically to make myself sweat because I have found that it helps relieve the symptoms considerably. In fact, I did so today. I still occasionally feel some discomfort, but it is no longer severe enough to stop me from doing the things I need to do.

Even today, I still do not know the exact cause of the condition. However, one thing is clear to me. I lived in Nigeria my entire life and never experienced anything like this. I played football regularly and was very active, yet I never had any symptoms. The problem only started after I arrived in the UK, which makes me believe that something in the environment may be contributing to it.

I also met someone from Kenya who experienced the same condition after moving to the UK. He told me that he suffered from it for several years before eventually improving. Hearing his experience made me think that environmental factors could be involved.

One possibility I have considered is the difference in water quality. From my research, water in many parts of Africa is generally softer, whereas the water in London is known to be hard. When I first arrived in the UK, I regularly drank tap water and only stopped later. I'm not sure whether the condition is related to the environment, climate, water, vitamin deficiencies, or something else. However, I find it difficult to ignore the fact that the symptoms only began after moving to the UK.

Hi everyone,

I’ve been part of this Reddit community for a few years now, and it’s genuinely reassuring to know there are other people going through the same condition and finding treatments that help.

I’ve had cholinergic urticaria (CU) since I was 13, and I’m now 27. As I’ve gotten older, I’ve become better at managing it because I understand it more. That said, I’ve always brushed it off. Whenever I’ve tried explaining the pain to family or friends, it hasn’t really been taken seriously, so over time I convinced myself not to make a big deal of it either. Looking back, that probably wasn’t the best approach.

Only recently have I realised just how much this condition has affected my life. It’s impacted my relationships, work, and social life. Before I go anywhere or do anything, I have to think about whether my CU is going to flare up, and more often than not, that stops me from doing things altogether. It’s honestly incredible that I’ve lived like this for so long. Summer is especially difficult, and with UK summers getting hotter and lasting longer, I find myself feeling really low during that time of year.

I’m seeing my GP tomorrow, but if I’m honest, I’m not expecting much. I hope I’m wrong, but after dealing with this for 14 years, it’s hard not to be sceptical.

A few days ago, I read a post from someone who said they only developed CU after moving to the UK from Africa, and they wondered whether the climate played a part. That really got me thinking because when I visited Africa at 17, I was convinced the heat would make my CU unbearable. Instead, I didn’t have a single flare-up during the two weeks I was there, despite temperatures being between 30–40°C most days. It makes me wonder whether climate, humidity, or something else in the environment could be involved.

The only thing that consistently helps during bad flare-ups is smoking a very small amount of weed. It almost completely takes away the intense prickly sensation. The problem is, I don’t actually enjoy smoking, and I don’t want to rely on it just to get through the day.

At this point, I just want my life back. I’m tired of planning everything around this condition. If anyone has been in a similar situation, found an effective treatment, or has any advice about what I should discuss with my doctor, I’d really appreciate hearing from you.

I posted here once before but didn’t get any responses, so I’m hoping this time someone might be able to point me in the right direction.

Thanks for reading.

I'm still experiencing it right now and I want to ask if anyone who also experienced this. It's 4 am in the morning and i just got hives. It's cold and im not sweating but im getting hives. Is there anyone who also experienced this kind of thing?

The reason that i might be experiencing this is because i stopped doing exercises for just a few days because my body hurts and I haven't sweat in days.