Cold Urticaria

Posted , 6 users are following.

Hi everyone! I'm not sure if this is the right place or not, but is like to talk about something that I've been dealing with my whole life. I have cold urticaria, a condition that Google defines as "Rare". Cool, right?

Ever since I was two years old (fourteen now) whenever I would go out in the snow, or go in the cold section of the grocery store, or even outside on a chilly day, I would start itching, getting red splotches all over my body, and hives!

The doctors have always said that I would "grow out of it", but here I am 14 years later, and it hasn't changed! Now going into highschool I'm going to have to miss out on a lot of things, like marching band. I am crazy about playing trumpet, and that really gets me down.

I came to write here because I wanted to know if any of you have the same condition as I do, or possibly heat urticaria. I also want to know, that if you do have this condition, is there anything that helped you with symptoms, or got rid of it completely? I know it's wishful thinking, but I'd like to just be normal haha.

-Kellin

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  • Posted

    Hi Kellin. I have acute urticuria. i feel for you. Alot of people and drs out there cannot emphasize or do not have knowledge of the severity. So i can understand your frustration. i have the urticuria thats brought on by mostly heat but i believe in general it has something to do with a cystic skin problem that seems to be on both sides genetically. i take a stetoid called fludrocortisone which clears it up for the time on this drug..but ofcourse drs say not to take it repeatedly. its frustrating. i feel like saying..your the drs..if you cant figure out what else will help then let me take it..because im soo tired of the pain and symptoms. what symptoms do you get with your if i could ask.i eould like to become friends it sure helps to have a support group. i also get cellulitis..im wodering if that is a complication or a misdiagnoses.
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  • Posted

    I had urticaria for nearly 20 years until I discovered I was coeliac.  Get tested for this.  My belief is that you need to be not only gluten free but grain free also.  Try it, nothing to lose and everything to gain living a life without urticaria.  All the best!
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  • Posted

    I have Cold Urticaria too. For me, it first attacked after a period of the flu 3 and a half years ago, when I went outside on a cold sunny day in February. At first, I thought it was an allergic reaction to hazelnuts. I understand your frustration with the limits it puts on your life. I'm a runner and I have to be very wary of cold and especially windy days, and I live in the UK where it is cool, but rarely very cold (sub-zero daytime temps and snow is rare).

    It's one of the more stubborn kinds of urticaria, from what I've read, it lasts an average of 6 years. I think, given that it is most often an auto-immune condition, and that you got it as a child are still young, you have a very good chance of outgrowing it. But I wouldn't take that as an excuse from doctors to not treat this properly now. You don't want to lose your whole youth to suffering with this when there are things that can potentially help. Though you'll have to weigh the cost in side effects of some medicines against the severity of your suffering.

    I've just gone through a period of treatment with Cyclosporine. It did actually help the symptoms a lot. Rash was down to about 25% of what it was, and itching largely went away. But I was on 4mg per kilo (150mg twice a day) and any less seemed to not work. But after a few months, the side effects at 4mg/kilo meant I had to come off it. I was extremely tired, had weakened muscles, muscle cramps, nausea and caused my blood pressure to go high. But I was unlucky, and for some lucky people Cyclosporine can actually sort out urticaria long-term, even once they come off it. For others it can actually reduce it long-term, and I am catiously hoping that is the case for me. I've been reasonably stable since coming off it. I think I have less rash than before I took it, and only one noticable bout of itching. If it has reduced it, then I think it may have been worth the couple of months of feeling pretty unwell.

    If necessary, next they are going to try Mycophenolate Mofetil, which has a similar method of action to Cyclosporine (an immunosuppresant that dampens down T-Cell/mast mell activity), but less severe side effects. It takes a good few weeks or months to work but  I'm optimistic that will be helpful and have less side effects.

    You have to stay out of strong sunshine with that one though (and Cyclosporine), as it slightly incresases the risk of skin cancer with long-term use.

    If I were you, I would research who is the best Urticaria specialist within reasonable travel distance and go to see them. If you've already tried high-dose next generation anti-histamines (e.g. Fexofenadine 4 times daily), and it doesn't work, talk to them about Xolair, Mycophenolate, Cyclosporine etc... But potentially, they will be wary of using some of those, (especially the latter), when you are so young because of the risk of potentially severe side-effects. Especially when you are female and 14, because for some unluckly people it can effect your gums and cause unwanted hair to grow. There's also Methotrexate and a few other things that can be tried, that are more harmless, if probably less effective.

    Xolair is very promising for some people, but it pretty expensive and probably impossible to get prescribed for Cold Urticaria in the UK, where it's funding is very limited to Severe Asthma and I think certain types of severe spontaneous Urticarias. Also, here, they would limit treatment to maybe 6-months, and then you would be back to square one since it won't fix the problem long-term. But if you are in the USA and your health insurance covers it, that is worth looking into. 

    Aside from prescription drugs, I found Periactin (Cryoheptadine) helpful, though it made makes me drowsy (and hungry). Also, fexofenadine is somewhat useful. And topical methol gel (2-3%) gives good temporary l relief from the itching.

    Although not directly caused by the cold urticaria, I also have some unexplained itching that comes on at night about once a week and lasts for 3 nights, causing me to loose a lot of sleep. I have fairly severe Asthma since I was about 4 years-old, hay-fever and real allergies to cats, dogs, dust mites, tree pollen, grass pollen, some molds and hazelnuts.

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  • Posted

    Hey. I know you posted this several months ago, but I wanted to let you know that I have both heat and cold urticaria and I participated in color guard within the marching band for three years. There was plenty of itching and hives, and sometimes the hives hurt, but it is possible. I take Ranitidine and either Claritin or Zyrtec, alternating every few months, twice daily to help, but I still broke out at almost every practice and competition. However, in my opinion, it was completely worth it; marching band was an amazing experience (I actually just finished my last season about two months ago and I'm currently in the winter season).

    If you do end up joining, though, I would recommend asking your doctor for an EpiPen prescription just in case, as heat/cold urticaria can cause anaphylaxis. In my experience, the marching band is very understanding. We had one girl who passed out and had to be carried off after every performance, several of us have asthma and needed inhalers on hand for right after, one girl was diabetic and would sometimes pass out and would always be given sugar before/after, we had a few who had seizures with exercise, one girl was allergic to the sun, one got severe migraines triggered by exercise and had medicine on hand for after performances, several of us had EpiPens ready, and two of us had urticaria; all of these were conditions made worse by marching band, but we really love marching band, and the band directors/coaches/parents were very understanding and helped with medication and carrying people off the field if needed.

    Basically, you don't have to let your health conditions stop you from doing things you love, especially if you can find supportive adults around you to help out. However, you should also talk to your doctor and parents before making any decisions.

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