Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)


My name is Claire. I live in Cincinnati, OH.

I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out that I had it about 4 years after my symptoms started showing up. I first noticed my hives when i went swimming in a pool for the first time in years.

I got light headed, hives all over my body, and my body burned. I can’t eat ice cream, can’t drink cold drinks, i can’t even help my mom bring the milk in from the car because it’s to cold.

I have to stay away from anything cold and living in Cincinnati makes it pretty hard. There is one foundation for this disease and it has really helped me but we need to get the word out because every medication the doctors have put me on, so far, don’t work.

I’ve had this disease for about 16 years. I hate living in fear. Knowing that i could die just from walking in a building with air conditioning scares me. I’m only 18 and I don’t want to live in fear from day in and day out. We need help.

Do you have Cold Urticaria (CU or Cold Contact Urticaria)? Make sure to leave a comment to connect!

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Global Genes Comments

  1. irene carlson says:

    Mine now is very life thretening and I fighting for my life.No one exept doctors who know my history and see what happens once exposed to cold environment’s below 22. C. I turn red all over body ,and swell so badly to remove clothing I must use sisseres .

  2. Had this condition since I was about four years old, after a nasty bout of chicken pox. At 47 yrs old, I still get symptoms, noticed it today after taking dogs to the beach. Bright red swollen hands with white nettle rash.
    I seem to be vulnerable if I’m a little run down or have a cold or something. Made life difficult as a kid, winter sports were a problem . No shorts for football , my entire legs would get covered in rash. Kids were cruel and pointed / laughed.
    Never took anything for it, just wrap up warm and take precautions.
    Last time doctor asked if I had any alergies, laughed when I said ‘ the cold’..
    Stay warm everybody
    Regards Ian
    UK

  3. I had this issue around November/December of 2015. It was terrible for me because I’m a young adult who loves going out. It also sucks when I put on make up and then when the cold air hits I start getting hives on my face. It gets super itchy and noticeable on my face so I just take my make up off and end up cancelling my plans. It started to get better as spring/summer came. I would take allergy mess from time to time for the hives to stay away temporarily. Then around September/October 2016 (cold air arrived and hives got worse again), my family told me about this supplement. And OMG it was a life changer!!!!!!!!!!!!!!!!!!!!!!!! It’s called Renew Life Critical Liver Support. I’m on my second bottle as of right now but my body progressively got better and the hives are gone as of now. I used to get sick easily and I think this stuff helped my immune system. But most importantly the hives went away. I would take 1-3 capsules a day, everyday. sometimes I would forget haha. I think what really helped was from the main ingredient MILK THISTLE. I googled this ingredient and they have other brands/supplement with milk thistle and it seems to be very good for the body.

    The brand that I took had a slight odor that was kind of like milk. Weird but that’s normal. The first day I took it I couldn’t tell any difference. I was told to keep taking it and the hives will eventually calm down. So I kept taking it and the hives started going away. I had big welches before and then after taking the supplement the welches appeared smaller over time and eventually disappeared. I would say take at least two bottles for it to completely go away. Right now I don’t have any issues which is why I take the supplement from time to time and still have 1/3 of the bottle of left (2nd bottle). Oh I also, took allergy meds from time to time when I started the supplement. I would take allergy meds at night since it lasts for 24 hours. It would help with hives appearing while I was sleeping and I could go into work comfortably. When I got to work I would take the supplement through out the days. I started taking allergy meds 3 nights/week along with the supplement during the day. And progressively stopped allergy meds and kept on with the supplement.

    It really helped me and I hope this will help whoever tries it 🙂

  4. Christine says:

    When I was a kid, I had what I thought was a birthmark on the inner side of my arm. Just a small brown spot, as I got older, it would puff up and become itchy. One day that spot left and these horrible welts showed up from time to time…always after swimming! Now I’m 41 & the cold is a nightmare, I go swimming but the pain is overwelming sometimes…yes it is now painful to be cold. They cover my entire body, and last for hrs and hrs. My Dr told me I was crazy and ppl are not alergic to cold… lol lies! So glad I found this page.

  5. Hi, I’m 14 and I was diagnosed with this about 3 days ago. My life long dream was to join the military and serve my country proudly. I was waiting and waiting till I was 16 to finally enlist. That dream is over now, I barely want to live anymore..

    • Rebecca Nelson says:

      I developed it when I was about 13, and while it has caused problems in certain situations (swimming, for example), it has not been a major burden for me. It does not have to be for you, and it is certainly not the end of the world. There are medications and preventative measures that can keep it under control. And, if you’re one of the lucky few, you will not live with it forever. I’m not sure what the military policies are regarding admission of people with this condition, but by the time you’re 16, you’ll have learned what your limits and reactions are so you have a better idea of what you can and can’t do. There are plenty of military jobs that would not be affected at all by CU. Don’t give up hope, friend.

  6. Misbah Ibrahim says:

    Hi! I’m 18 years old and i have been suffering from cold urticaria for about 4 years. Hives would form all over my body just by getting in contact with cold air or water, although i don’t have a problem with eating cold stuff. Mainly i would get hives on arms, legs and back. After some time when my body would get back to its normal temperature they would disappear. The dermatologists that i consulted said that there’s not much medication available yet for this rare condition, but yea he prescribed me this tablet ‘zyrtec’ and it really helped, having one in the morning would help me go on with the day without getting any hives. But i try not to use it very often, for i fear my body would totally get used to it, so i would only use it when i have to go out for a little more time. While at home i would just try to stay warm. Its also very hard to explain to someone else that i’m allergic to cold! people would at first think that i’m tryna be funny and then you have to explain them all.

  7. Misbah Ibrahim says:

    Hi! I have been suffering from cold urticaria for about 4 years. Hives would form all over my body just by getting in contact with cold air or water, although i don’t have a problem with eating cold stuff. Mainly i would get hives on arms, legs and back. After some time when my body would get back to its normal temperature they would disappear. The dermatologists that i consulted said that there’s not much medication available yet for this rare condition, but yea he prescribed me this tablet ‘zyrtec’ and it really helped, having one in the morning would help me go on with the day without getting any hives. But i try not to use it very often, for i fear my body would totally get used to it, so i would only use it when i have to go out for a little more time. While at home i would just try to stay warm. Its also very hard to explain to someone else that i’m allergic to cold! people would at first think that i’m tryna be funny and then you have to explain them all.

    • Haha it’s funny you say that people don’t believe you when you say your allergic to the cold, I get the exact reaction from people, when I say “I’m allergic to the cold” they say “yeah me too” them I’m like “no im actually allergic”. Sorry to laugh, I can just totally relate to your comment.

  8. Kathy McWhorter says:

    Hi, I was diagnosed with what my doctor called “cold-induced cholinergic urticaria” when I was in my early 30s.

    My doctor told me that itching & hives were most likely to occur following a virus or illness when my immune system was down. He said that a combination of an elevated core body temperature (caused by stress, hormones, exercise, etc) combined with cold temperatures were the problem. He put me on an asthma medication (I forget the name – that was over 20 years ago) for several months & my symptoms eventually subsided.

    My symptoms have been somewhat sporadic since then – some cold seasons I got hives & others I had absolutely no symptoms. Once the symptoms started, however, they lasted for months.

    Last winter my symptoms came on stronger than ever & medications helped very little. I felt that something more was at play. On a hunch, I decided to eliminate aspartame from my diet. So far, nearly a year later, the hives have not returned. Coincidence? I have no idea but I’m hoping that, at the very least, giving up aspartame has lessened my symptoms.

    I belong to a cold urticaria group on Facebook & a woman there stopped taking aspirin & her hives went away.

    This world of cold urticaria is a complex one & I hope that each one of us finds a way to lessen our symptoms.

  9. Hi Claire (and the others who have posted) — My name is Monica and my 17-year-old son has had CU for about 7 years. (We think — honestly it took us about 4 years to connect the dots because he has so many other allergies.) Looking back on his health records I believe there was a connection with his getting allergy shots and the onset of CU. (I’ve read that many people develop symptoms following an extreme illness, medications, or insect bites.) It has been a tough journey as he’s developed some other allergic conditions since then. My son is on quite a few antihistamines, but I just read about a woman in Australia who is taking antimalarial medication with some success — I can’t wait to ask my son’s allergist at our next appointment if this is a possible treatment for him (there are some not-so-nice side effects tho…). Good luck — and pay attention to your symptoms. My son does not experience this (yet) — but some people even experience symptoms while eating or drinking cold foods. I urge you all to get Epi-Pens — and know the symptoms of shock. Our allergist instructed us to use an Epi Pen if 2 or more “body systems” were showing reactions (i.e., respiratory, gastro, skin are all systems), because that can be overwhelming for the body. Some people will experience vomiting or diarrhea as a symptom and not realize that those can be allergic symptoms. Stay safe and warm!

  10. Moranda Conrady says:

    I was diagnosed with severe primary acquired cold urticaria when I was 2 years old. I tried meds for it when I was 15. They worked for about a week then I got used to them. We doubled the dosage. Same thing happened. We tripled it, my body had so hard of a crash from them that I passed out while I was walking into church and cracked my head open. I live right outside Louisville so it’s not warm here all the time either. I’ll walk in from parking my car and my teachers will ask me if I’m high because my eyes will be red from the cold. I’m almost 18 and I can’t find a way to control it. It’s awful getting strange looks from people when I walk in a building and my whole body is covered in hives. I haven’t been able to swim in a pool for years because I’ll go into shock. I just want a cure or a coping method for it.

  11. I’ve had this allergy for about 30 years and it is tough to love with sometimes. Keep your head up a d move to a warmer climate. I promise it will be worth it.

  12. Hi, I just found out that I have this too. I went to two doctors to make sure they had it right because i had never heard of it before. So far they’ve put me on meds and given me an epipen for it but I’ve found it really hard to explain it to my friends without them thinking I’m joking. I’m 16 so pretty much everyone I know thinks that I’m just trying to be funny when I say I’m allergic to the cold. Does anybody have tips on how to properly explain it to someone else?

    • Patricia Simpson says:

      I’m afraid it doesn’t matter if you are 16 or 43. I usually avoid bringing it up at all, but when I do, the most common answer I get is
      “Haha, I’m allergic to cold too. I hate it!” Now I only bring it up when it’s relevant as in someone asking me why I won’t go to the beach or the pool or why I cover my face when it’s not even blizzard conditions. I start by telling them what would happen to me if I didn’t (breakout, redness, discomfort, shock) and then tell them the reason (CU) and tell them it’s ok that they have never heard of it because it’s very rare. There’s still disbelief but at least then you can tell them to look it up. By approaching the conversation from symptoms to reason instead of vis versa, that cuts down the jokes or dismissals. It’s a bit more dramatic, but it gets the point across. People are generally very curious and understanding after that.

    • I get the “haha! Me too!” I have to explain that I am really MEDICALLY allergic to cold…like it’s in my medical records. I live in Wyoming, so it’s cold here 6-7 months out of the year…and no, I’m not moving. I keep a fleece at my desk all year round and my work “brothers” make sure and keep it warm in here for me. I park right next to the front door in the winter time.

    • I had it in hs too…at that time my allergist just said, “You are allergic to the cold, don’t get thrown into cold water or you will go into shock”…that was it…mine eventually subsided…I just told people I was allergic to the cold and they looked at me like I was nuts! If you try the Lungplus and Warmskin those will both help you.

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