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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
163 Responses
Avatar universal
I am so sorry. I completely understand what you are going through, or atleast in a sense. I have had hives for 4 months now and nothing is making them go away or even get better. its so frustrating because this is the most crucial time in my life as I am a single mom trying to make a life for my 1 year old and I. I am just graduating college and interviewing for all these big jobs and its humiliating waking up with hives. I dont know whats causing them. ofcourse the doctor says stress. I have tried a lot of things but nothing has worked.. has your doctor prescribed anything?
Avatar universal
Have you tried Calendula, or Marigold Flower and Chickweed. You can make a paste from the stems & flower tops. Also you can try Burdock root, and dandelion root made into a tincture. Just boil, cool, and drink.
Avatar universal
I have aquagenic urticaria too!
I live in the Netherlands and I was told that there are only a few people with aquenic urticaria in the world.
I take anti-histamine (128mg) every day, and it prevents most of it. I would really like to have other medication since this one makes me tired and I have problems concentrating.

When I take a swim in an outdoor swimming pool filled with tapwater I get hives which stay there for about 3 months, its terrible!

I hope this post helps you, since you posted your message already a while ago I hope you read it.
Avatar universal
my doctor (kaiser) told me I have urticaris vasculitis and the doctors in OSHU told me it's Granuloma annulare whom should I belive, I got better just few months ago and just left with scares all over my arm,legs,back and now it stated again I can understand what you are going threw. It is really terrible especally when I have to dress up and i love to wear sleeve less but I can't no more.I don't know if this is from cold weather sense I moved from CA to WA state.
If anyone can help me .
Avatar universal
I am 23 years old girl living in Mauritius. I have been suffering from aquagenic urticaria since 8 years now. i have tried many things but noting worked out well. it would be nice if somebody could help..
Avatar universal
for the last bout of urticaria, my allergist (MD) prescribed a course of steroids, followed by the antihistamine Avarax, a new fast acting AH that seemed to do the trick.  

if you've tried everything and nothing works, you can look into Chinese medicine, herbs or even acupuncture, which my neighbor (had full body hives for weeks) tried.  It took one week using herbs and acupunture for hers to completely disappear.  Hang in there, it's not forever.
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