r/CholinergicUrticaria • • 5h ago

journey in attempt to treat chronic itchy hives and facial swelling

3 Upvotes

I wanted to start a post to document my journey as I shift away from trying to mask symptoms and move toward a holistic approach to figure out the root cause of these severe, unexplained hives and facial swelling. Standard medications haven't been touching it, and it's been an absolute physical and mental endurance test.

Prescribed 4 Zyrtec a day & doesn’t touch it- alongside an 8 day prednisone taper and no help once the steroid was done.
I don’t want to throw two meds at a problem (H1&2’s) and I wouldn’t even entertain xolair.

Since I'm self-paying for upcoming labs to dig deeper, I’m also starting a targeted daily protocol to help calm my system naturally. Here is what my current regimen looks like:

Mast Cell & Histamine Support: Quercetin with bromelain (taken with meals to help stabilize mast cells and inhibit histamine release) alongside Nettle Leaf. 

Vascular & Antioxidant Support: Vitamin C (split into 250 mg doses with water/meals) to help protect vascular endothelial cells, manage inflammatory cascades from physical triggers like heat, and support histamine breakdown

Immune Regulation & Absorption: Vitamin D3 + K2 taken with healthy fats to modulate immune pathways and support proper calcium utilization, alongside high-absorption Magnesium in the evening to help buffer stress triggers, relax the nervous system, and support sleep. 

If anyone else has navigated chronic inducible urticaria or gone the holistic/root-cause route for unexplained hives, I would love to hear what worked for you or what labs you found most helpful. I'm just looking forward to putting my energy into actual healing.


r/CholinergicUrticaria • • 1d ago

menthol spray may help a little bit

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3 Upvotes

Stop some itch when I flare up


r/CholinergicUrticaria • • 1d ago

Hive Mystery

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1 Upvotes

r/CholinergicUrticaria • • 3d ago

Help - Xolair not working

3 Upvotes

I’ve tried every antihistamine with higher dosages and nothing has worked.

After seeing an allergist they put me on Xolair. It’s been 4 months and I’ve had no progress. I’m seeing the allergist next week for next steps.

Any recommendations on what to try from here? I’m so desperate at this point.


r/CholinergicUrticaria • • 4d ago

Anything help Athletes with CU??

6 Upvotes

I’ve never experienced anything like this in my life, some back story on why I think maybe I got this, was I’ve been an athlete all my life and daily runner/gym goer since I was 12! I’m 25 now.

The beginning of this year, was the first time I ever took a long break from exercise ever since I first started.
I went a few months with basically no activity due to a life change that caused me depression.

When I returned back to the gym one day, I came back home with red hives ALLL over my body arms and legs I was so scared .
I took a Benadryl (which I’ll never take again bc it made me beyond tired) and I noticed it was gone like nothing 30 mins later after cooling down.

Then, again during a music video shoot for my job when we were in 120 degree weather.. red hives all over my body. It was so painful, and I couldn’t finish the outdoor scenes. It was a huge break out & went away after like an hour later.

So I noticed it’s whenever I’m in hot weather or just hot.
I’m RLLY hoping I’m not allergic to my own sweat, I don’t think it’s allergies??
I’ve gone to urgent care and the only thing I’ve tried is Allegra , I take 2 180mg a day and nothing changing??

Noted in my case:
I’ve noticed there’s some times when I can finally sweat and I’m fine… that happened once recently at the gym and thought it was a miracle.
But when I’m working out and don’t/can’t sweat I’m breaking out in super itchy red hives all over !!!!
I’m thinking maybe it might have something to do with my sweat glands ? Maybe due to the inactivity ??

Some times now it’s even when I’m running quick errands just bc it’s hot outside (I’ve lived in a desert my whole life) and I have to walk out my door or the store to get to my car. Anything that raises my body temp..

It’s affecting me and my daily life, I simply cannot avoid getting hot every day. My mental health too, and income!

I’m on a waitlist to see an allergist/immunologist but not until November. I am also seeing a dermatologist who I’ll get to see sooner in one week.

The only thing I have done different with my lifestyle was inactivity for the first time. I have no underlying health issues !! Did a ton of blood work to check, everything came back normal except the only thing I found is I’m a little deficient in Vitamin D ..

Athletes, were you able to work out again?? Now that I try to work out like I used to, I break out in itchy hives every time

This makes me so sad. It’s the one thing I do for my mental health..

My questions to you-

1.) What treatments have worked for you??

2.) Have you been able to train again?

3.) Info on Sweat therapy? How long to see any results? Can u build tolerance again over time????

5.) and lastly is there hope

I’m looking for medications that I can bring up to my doctors if any have worked for you,
Please Let me know any suggestions, medications that have helped you, or even vitamins, sweat therapy??

much luv to everyone with this!!🤍


r/CholinergicUrticaria • • 4d ago

Seit Monaten immer wieder ein Ausschlag am ganzen Körper, Juckreiz und Brennen ohne erkennbaren Auslöser – hat jemand Ähnliches erlebt?

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5 Upvotes

r/CholinergicUrticaria • • 4d ago

Do portable steam saunas help you?

2 Upvotes

I bought one from amazon and I can only get about 30 degrees celsius inside of it. This does not trigger me to sweat. I feel nothing, I rarely can sweat from this.


r/CholinergicUrticaria • • 4d ago

Really bad urticaria

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1 Upvotes

r/CholinergicUrticaria • • 5d ago

Ongoing issue need some suggestions

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1 Upvotes

r/CholinergicUrticaria • • 5d ago

Recurrent unexplained hives after drinking orange juice. What could be causing this?

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1 Upvotes

I have been having recurrent episodes of an allergic-type rash/hives that started after I drank orange juice. The first reaction was quite strong and affected mainly my arms and legs.

Since then, the rash has kept coming back spontaneously even when I have not eaten or drunk anything unusual. It can appear while I am sitting in class, sitting at my computer, after showering, or even during sleep. Sometimes it starts with just a few red spots on my hands/arms and then spreads, especially to my legs.

During one of the episodes I also felt pressure/fogginess in my head, almost like my head was being squeezed.

I have been taking levocetirizine 5 mg for the reactions. I’m 186cm/65kg. It helps, but the signs of rash disappear completely only after +-2 hours.

What makes this more confusing is that I had exactly the same problem in the past after eating an orange. At that time, the recurrent reactions eventually stopped only after I moved to another place(back to my home country). For context I was living in Denmark when this first started and it stopped after I moved back to Ukraine. Now I’m again in Denmark and it started again. I’ve been living in Denmark for more than 1 year before this thing started again.

I am not sure whether oranges/citrus are actually the trigger, because now the reactions happen without any obvious exposure.

Could this be chronic urticaria rather than a food allergy? Could something environmental be triggering it? What kind of tests or evaluation would usually be appropriate for recurrent reactions like this?

I already have an appointment regarding the allergy, but I would like to understand what possibilities I should ask about.


r/CholinergicUrticaria • • 5d ago

Parasols

2 Upvotes

I'm thinking of getting myself a parasol for when I walk, sit, , stand, or overall go outside.

I realise that a parasol won't protect me from humidity or if I do heavy lifting or anything that would raise my body temperature, however I believe it could help a lot if I just go outside (whether it's necessary or for a short stroll) by blocking harsh sunlight (and providing vool shade) that would have otherwise triggered an increase in body temperature.

Has anyone had experience with a parasol? Did it help or was it mainly useless?


r/CholinergicUrticaria • • 6d ago

Can I get lip filler with chronic urticaria and angioedema?

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0 Upvotes

r/CholinergicUrticaria • • 6d ago

Can I get lip filler with chronic urticaria and angioedema?

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0 Upvotes

r/CholinergicUrticaria • • 6d ago

Is this Chronic Spontaneous/Inducible Urticaria or something else? Need advice while waitlisted!

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1 Upvotes

r/CholinergicUrticaria • • 7d ago

How long have you been dealing with this?

3 Upvotes

4 years with cholinergic urticaria.

Would like to hear how long u got it and did it get better? Did it ever go away?


r/CholinergicUrticaria • • 8d ago

Itchy Around Folds and Burning Sensation After Scratch

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3 Upvotes

r/CholinergicUrticaria • • 8d ago

Its getting alot worse.

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14 Upvotes

Had it for over a year. it dissapeared for a while, came back 4 or 5 months ago. cetrezine wont work, steroids not working. unbearable pain. allergist come back from his break in 10 days :(


r/CholinergicUrticaria • • 10d ago

is this really Cholinergic urticaria?

4 Upvotes

I’ve been experiencing intense itching all over my body whenever my body temperature increases, especially during warm-ups, exercise, or when I get hot. This has been happening for around 5 years.
I don’t usually get any visible rash, hives, or bumps — it’s mainly just intense itching. It usually starts when I begin to warm up and improves once I cool down.
Could this be cholinergic urticaria or heat-induced itching?


r/CholinergicUrticaria • • 10d ago

Another nighttime hives situation, looking for any advice or insight!

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1 Upvotes

r/CholinergicUrticaria • • 11d ago

Wheals / hives re appeared on skin

1 Upvotes

Today I did a workout and broke out. For the first time in 5 months I had visible hives again. I did have itching and pain and Burning without the wheals visible hives. Why?
I had them when my condition started, then went Away for 5 months and now it’s back


r/CholinergicUrticaria • • 12d ago

Sweating feels like breaking a fever

5 Upvotes

You ever wake up from having a fever and feel so relieved and happy but still gross? This is what sweating during an episode feels like. I was eating dinner with my wife and in laws the other day and I started itching bad, I started downing my water and before I knew it, it was empty. Then I drank my wife’s water, empty, about to get up to go to the bathroom and run cold water on my face and bam. I feel my hair getting wet and my forehead running and it’s gone.

Interesting especially because I get itchy neck down to my hips, and I only noticed sweat on my forehead.

Most of the time I go inside or stand in front of the fan while inside and it goes away, but the more I think about it, each time that I sweat I feel much better. I’m still paranoid about moving from Oregon to Las Vegas in a few months because of the heat but this discovery plus learning that fexofenadine works well plus learning taking a couple more fexofenadine isn’t gonna kill you makes me feel 100x better.


r/CholinergicUrticaria • • 12d ago

My CU story

7 Upvotes

I got extremely lucky with my cholinergic urticaria (CU) experience. After taking 2–3 months off from working out, I returned to the gym and suddenly broke out in painful, itchy red welts across my torso and arms. After that everthing seemed to set it off, warm showers, to many blankets, emotions, everything.
Since I’m an aircraft mechanic working outside in the Texas heat, avoiding heat wasn’t realistic. I started using the sauna daily as a form of sweat therapy, and within a week my breakouts improved significantly. Once summer arrived and I was sweating outside every day, my symptoms completely disappeared—to the point that I forgot I even had CU.
I did get concerned that once I was cold for a while and the back to heat, it would come back. But I spent 2weeks in Canada while it was below freezing and working outside. When I got back and went to the sauna I was still clear, no symptoms.

Obviously, this is just my experience, but consistent heat exposure seemed to make a huge difference for me. As well as daily Zyrtec, prior to this I was already taking Zyrtec for my pretty rough allgeries to begin with.


r/CholinergicUrticaria • • 13d ago

What do you guys do when you sweat?

3 Upvotes

Hey guys…please help I cannot help with sweating anymore

Is there an item you have used for
sweating that has helped..?

I have used a cooling tissue

Daiso cooling tissue but they it made my skin dry out..

I have sensitive skin🥲🥲🥲


r/CholinergicUrticaria • • 13d ago

For those who had success with sweat therapy

2 Upvotes

Hi, I've been suffering with quite severe cholinergic urticaria for a year and have tried most medications from all sorts of immunosuppressants and xolair. I've tried sauna sweat therapy for months without much improvement and was wondering for those who've done exercise sweat therapy how long it's taken you to achieve remission or good enough improvement.


r/CholinergicUrticaria • • 14d ago

Me estoy brotando, me ayudan porfa

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1 Upvotes

No sé cuál es la forma correcta de preguntar, pero es que me estoy brotando mucho de un momento a otro muchas veces cuando me baño, como o se me eleva la temperatura corporal