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I have Aquagenic Urticaria does any one else?!

I've had aquagenic urticaria for 2 yrs now and where I live the doctor told me I am the only one that has this in the city.

I was told to do my research on this disease online because my doctor did not have much information about it because its occurance is so rare.

All the medication that was prescribed didnt work. Even using boxes of baking soda  in the bathtub doesnt work and thats what my dermatologist told me would get rid of the hives in the first place.

I'm sick of just dealing with the growing amount of itchy hives. My doctor told me with aquagenic the hives stay on the torso and rarely go anywhere else. After 2 yrs they have spread and go anywhere depending on the amount of time I'm showering/working out/ or even just standing in the sun or wearing my winter coat, and lately i just always have them.


I've dealt with this all alone long enough and I was wondering if there was anyone else who has it? Are there any other tricks of the trade to deal with this awful disease!!??

thanks alot!! <3 lauren
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Avatar universal
hi,im liplop im sitting here had a very quick bath, look like a lobster, stinging like hell, my skin is soooooooo painful, i'm 11 and I also love swimming (will i ever be able to swim again?) cant use any creams on my skin,i'm dreading the summer in case i sweat, if you get caught out in the rain do you turn red and spotty? Only been diagnosed a couple of months ago, had it well over a year now, on friday i have been prescribed with fexfenadine and cetirizine together, hope to see some improvements, what tablets do you take? do they help and do you have any tips?
liplop and mum x  
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Avatar universal
I was born with aquagenic urcticara and I am 15. Anything that has water in it makes me break out in hives for several hours. I recently found out that I am also allergic to olive oil. I really don't know what to do about any of it besides deal with it and take medicine around the clock. It lessens the pain but doesn't stop it completely. I love swimming af being in the rain but my swimming suits and clothes stitck to my skin and makes it worse. I just deal with it and try to act like nothing is wrong when someone asks about it. I would really like someone to talk to about this but there is no one around me that quite understands what is happening to me everyday.
~Crystal
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Avatar universal
hi i am from india
i have also aquagenic urticaria it pains very much please tell me is there any cure of this disease or something to get pain from this hives please tell me my email id is ***@****......
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Avatar universal
hi, just come back from norwich hospital i have been diagnosed with Aquagenic urticaria i thought i was going mad, but now i know whats wrong with me i can't cry, sweat, bath/shower, go out in the rain, swim, paddle in the sea, i also can not use any creams/lotions, deodorant, if i go in the rain i look like a red dalmatian dog, can any one give me any advise? had this for about a year now, i'm 11years old, from kitkat and mum  xx
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Avatar universal
How many of you that have Aquagena Uticaria are also allergic to Sulfa based drugs?
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Avatar universal
I just found this!  

I had it for a while, but now I just get mild hives/eczema to varying degrees.

I am fairly pale, so after a bath my red patches were very prominent.

I don't think it is the additives in the water because I went from good water in the UK to even better mountain water in Greece and still got them.  I tried hot, warm and cold water and still the same.  I even tried a 15 second bath at room temperature.  No difference.

I really don't think there is a magic pill out there, but I have really tried to identify what I am allergic to and avoid it.  I am getting better all the time.

The Doctors seem to hate this approach.  "Don't you want to go out with your mates for a pizza?" asked my doctor when I told him I wanted to avoid all possible allergens.

So there it is.  Avoid your allergens.  Mine was my cat.  I had to give him away.  I only eat non-preserved stuff.  Meat, fruit, veg, proper bread, milk etc.  In other words I avoid anything with man-made stuff in it.  The worst one for me is sulphur dioxide, and that seems to be in everything from frozen chips (French fries) to fresh prawns.  Give me some long-life pate and I can show you firework display on my skin.

I shouldn't go onto your Doctor about this too much though, especially if you live in the UK or US because they rather you eat what you like and they just want to try to treat the symptoms.  Plus, if everyone avoided sulfites that were allergic to them, it would really damage our economies.

Hope this helps.
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