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. Hello I’m Kayla, I too live in Ohio with this condition. I found out I had it when I was swimming as well. I was about 17 and I’m 26 now. I’ve been to the doctor for it but it was pretty much written off when I said “I’m allergic to the cold” followed by confused looks so I’ve learned to live with it. Today a shoveled my drive way then ran up to my room to curl into a ball and scratch my body like crazy feeling sorry for myself lol. I’d say my outbreaks become pretty severe and happen very quickly, it’s burns and hurt but it’s more annoying more than anything. Stay warm everyone !!

  2. Katie Jones says:

    I have it. It auto-immune diseases run in my family genetics, but I also just found out I am pretty vitamin d deficient. Mine shows up when I am outside in the cold (I live in upstate NY!), use an ice pack, carry anything cold in my hands, use the air conditioner in my car, without pointing all the vents away from me. I can still eat and drink cold stuff, but I get puffy lips so I probably shouldn’t. I finally talked to a doctor about it yesterday and he told me to take pepcid and claritin together daily. He’s my new doctor and we just happen to be distant cousins. He told me that our family carries the gene that causes auto-immune disorders. I didn’t take any of this seriously until I got home from his office. Anyone have the kind of experience I have? Is this going to get worse? It seems like I am getting more and more sensitive the older I get. (I just turned 49.)

  3. Hi from Bathurst, Australia! I was diagnosed with cold urticaria when I all of a sudden started getting hives as soon as I would walk outside in winter. They would mostly come up on my hands, arms and legs. This only happened after I had my son, and around the same time I developed heart palpitations/panic attacks/physical anxiety symptoms (which is very unlike me, I am a very calm and chilled person). I was wondering if anyone else has experienced anything like this and if there may be a link?

  4. Kevin burke says:

    My first in counter with cu when I was 11 I grew out of cu when I turned 18 I’m 41. I lived on Benadryl when I did have cu

  5. Hello! I’m from Long Island, NY. I was diagnosed with CU when I was ten years old after having a run-in with Viral Meningitis. I am 26 now. Since dx, I was unable to go into the pool or ocean on excrutiatingly hot days and I’ve always had to take extra preparations when leaving my house during the winter months. I also suffer from asthma, eczema, and have numerous other allergies; so you can imagine the additional issues I have when I get flare-ups. I’ve taken many OTC allergy medications, I’ve also tried allergy shots. I have not been put on a long-term medication but I’d be interested to know what works for other people and what additional methods that people have used to cope with their symptoms.

    My only hope has been to move to a state with warmer weather. I’d also like to know what the organization has done for their lives?

    It’s fascinating to see how many people also suffer from this condition. I’ve never found anything like this before.
    Hope this helps!

  6. Hello ive had hives now for 5 years can’t go out cold without wear undergarments or wrapping up properly it’s horrible and painfull can’t go swimming or nothing got mine though some bad seafood now can’t have that or fish 😦

  7. Has anyone had success with the drug ilaris? I am on the Cold Urticaria facebook page and some people have said that they have had success, and I’ve done some reserch and it’s sometime used to treat Familial Cold Autoinflammatory Syndrome which is basically another form of Cold Urticaria from what I can tell from what I’ve seen. I am making an appointment soon to talk to my doctor about it, please let me know if anyone has had success or expereince with the drug ilaris

  8. Hello, I’m Secret and I have not yet been diagnosed with cold urticaria. For four years I’ve dealt with this but unfortunately we can’t seem to find a doctor to tell us exactly what I’m dealing with. We had noticed the problem when I went swimming for the first time in the summer, on the property we own. We thought there was something in the water. Until winter time when the cold weather got here. Does it get worse?

    • Rebecca Nelson says:

      I’ve never been officially diagnosed, but have had CU for decades. At first we thought I’d been bit by a spider because my feet hurt horribly in the morning, but they felt better once they warmed up. A couple weeks later I had a some scary reactions while swimming in cold water that led me to figure it out.

      My sensitivity has stayed pretty stable my whole life. It changed slightly during pregnancy (I gained a whole 2 degrees of tolerance!), but went back to normal after my children were born. I don’t remember ever getting hives on my face until after they were born, though. I was hoping the hormonal fluctuations would “fix” me, but they didn’t. Oh well. Compared to the stories of others here, I don’t have it too bad, so I’m counting my blessings.

  9. Cynthia Lawrence says:

    I have been diagnosed with cold urticaria for around 10 years now. I live in the northeastern United States and have quite a collection of scarves, hats and gloves at my house (good thing I like to crochet!). Being that I teach in a 12 month program for medically fragile students I tend to get hives in my classroom on and off almost all summer especially if my clothes get water splashed on them. At first the allergist I was sent to thought I was allergic to water being that I was guaranteed a reaction if exposed to water and chilly air, but after testing with the good old I’ve cube test as well as submersion test where I sat in a chair and my arm was submerged in cold water with ice packs in it whereas I became dizzy and almost blacked out after a couple minutes. I do take chances I will admit. I take my children to the Jersey shore, if I go in the ocean before I bake in the sun, I can swim a bit. But once my body temp goes up from the sun, no more ocean-dipping for me. I keep a sweatshirt in the car for grocery shopping and a lap blanket for the movies.
    I have an Epipen, and I wear I medical alert ID which the nurse for my class helped me with the wording. I’m really not certain if what the protocol is to use the EpiPen, I fell like the time the reaction gets that bad, I won’t be able to administer it. For some hives and dizziness, I don’t bother. Never used it in 10 years.

  10. Bernadette Dotingco says:

    Hello everyone! My name is Bernadette and I am from the Philippines. I have this Cold Hives ever since I was a kid. I noticed these whenever I swam on the sea, and when it is cold. This made me shun from swimming especially so when the welts became bigger, got difficulty in breathing and having headache afterwards. What we knew of was, we ( with my two siblings) got this from our maternal grandmother. Now that I am a mother, out of my seven children, three have this. My eldest child who is in the medical school had a grieve incident in their hydrotherapy class when she really took antihistamine for the situation.
    Basically, we would just avoid any cold exposures to prevent having the red patches, worse to have headaches. I couldn’t imagine staying in places that have snow.
    We are lucky to be in the tropics!

  11. Wow I literally just found out I had this when I was around 15. We were swimming in cold water and all of a sudden I had itchy hives all over my body! Then the following winter I had to buy a long coat because whatever wasn’t covered enough broke out in hives. It was mostly on my wrists, my hand, my butt and thighs. Sometimes when it was really cold my face was affected too. Mine is already gone now, I don’t ever get them anymore. It lasted for about 5-10 years maybe. Although I’m gonna google that ice cube test and try it 🙂

  12. Janine Jagger says:

    You may have a genetic disorder called CAPS – cryopyrin associated periodic syndrome. It belongs to a family of auto-inflammatory diseases. The mutation is in the NLRP3 gene. The most recent treatment advance that has shown good results are IL-1 inhibitors, particularly Ilaris (canakinumab). Observations within the patient community have also yielded some promising results. Since it has become a legal over-the-counter product in all states, cannabidiol (CBD) has been tried by patients with auto-inflammatory diseases, including some with NLRP3 mutations, with some impressive results.
    Janine Jagger

  13. I’ve had it since I was 24 years old in 1982. Diagnosed by the “ice cube” test after many other test for allergy and autoimmune conditions. My doctor’s remark when finally diagnosed was “be glad you live in the South.” Took Atarax to suppress my immune system when first diagnosed but didn’t change anything when I quit. Just made me feel like a zombie when on them! I mostly just avoid cold and occasionally take antihistamines when I have a bad attack after getting outside in the cold. I have it even in warm weather when I perspire, like cutting grass on a breezy day. Also had a reaction to an IV that was cool, looked like worms under my skin, had them take it out and use a warm one. I wish there would be something to reverse this condition but after this many years I’ve learned to live with it.

  14. Yeah I’ve got it too.It happens so randomly in nights,and my feet or hands swell up.My mom thought it was because I ate prawn.Now it occurs whenever I’m in air conditioned places.I get hives.Yesterday I came home from Colombo in an air conditioned train.The itch started and I ignored it and dozed off.now the hives haven’t cured as it had been 2 days.I am twelve years old

  15. crystal osmer says:

    My name is crystal and i live in vermont…i have been diagnosed with the same disease since i was little i cant eat or drink anything cold i cant be outside to play in the snow with my nieces and nephews i cant even go swimming like everybody else its hard to live with this condition because no one believes me when i tell them i have a big allergy to the cold

  16. Hello. In 1990 I was diagnosed with Cold Urticaria when it just up and hit me at school. Everyone thought I was having an allergic reaction to something I ate. After a couple of visits, the doctor did the ice test on me and I ended up not being able to enjoy the things I loved – snow, cold air, swimming in cold waters, etc. For decades I thought I was the only one with this issue. I took Seldane until it became a restricted medication, then we tried different allergy meds until I could take one that wouldn’t make me fall asleep at school (and later work). It wasn’t until 4 years ago that I met someone else with cold urticaria! She then told me about the foundation and other resources. It blew my mind. The last time I had tried to look anything up (20 years ago) I couldn’t find much.
    Anyway, I did end up having to get an epipen at one point because I nearly blacked out one wintery day from the cold urticaria affecting my airway. I haven’t had one in awhile but after walking to work this morning and feeling dizzy I think i will attempt to get one this week.
    Has anyone had to have warmed IV fluids? They had to start doing this whenever I had surgery because my arm would start breaking out. I did have one doctor not believe me in the ER, thankfully it did not cause me to break out.
    Over the last decade I noticed that I tend to react quicker. I also noticed (this was awhile ago) that I get what one doctor called the cholinergic reaction, where I break out when I sweat even if it is not cold. Because of that, she dismissed my cold urticaria.
    Missouri winters are getting even colder so yeah, I think it’s definitely time to get this reevaluated and hopefully find some help. Going to see if I can get that LungPlus and WarmSkin for Christmas! Too bad the jackets for women are sold out (from a previous poster).

  17. Hello from snowy, cold Michigan! I have been dealing with this for only 2 years now. I just has another appointment with an allergists today and going to do some blood work to see if they can figure out if its an autoimmune issue. Good luck everyone!!!!! Mine flares up walking down the cold isles of the grocery store, wind and especially these cold winters! The burning is the worse!

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