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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
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
Hello,
Unfortunately for me, I believe I can top most of your stories. You see I have had Aquagenic Pruritus for about 4 yrs now. I have had to quite cross country running and all sports. I am always tired and in pain. AP is just the water caused itching and pain. But I have only been getting worse through the yrs. I have taken about 20 something different meds now and also went through light therapy. Nothing has worked. Although xyzal 5mg everyday seems to help take the edge of the itching.
This past week I went to Duke med for an annual 2 month appointment and thats when everything started spinning for me. I am now one of the rarest of the rare. Usually a person has either AP or AU. I have been diagnosed with both. Something that is really never seen.
I am a 17 year old, a senior in High School, I have dreams of going to Winthrop and teaching art to high schoolers. But all of this is uncertain now. I am so sick I can barley get through my day now. My immune system is almost non existent at this point so I currently have mono, swollen tonsils, an enlarged spleen, severe bone pain,and much more going on, all on top of having Ap and AU.
I am on daily steroids to help get ride of all the infections in my body and then we are going to work on my immune system and then hopefully the AP and AU.
I was told that the doctors only concern is my quality of life. This quit honestly scares me alot. I cry still thinking about what my life may be in 2, 3, 5 years.
So now that you know a little of me story I hope that some of you may feel better about your situations.
~Heather
Unfortunately for me, I believe I can top most of your stories. You see I have had Aquagenic Pruritus for about 4 yrs now. I have had to quite cross country running and all sports. I am always tired and in pain. AP is just the water caused itching and pain. But I have only been getting worse through the yrs. I have taken about 20 something different meds now and also went through light therapy. Nothing has worked. Although xyzal 5mg everyday seems to help take the edge of the itching.
This past week I went to Duke med for an annual 2 month appointment and thats when everything started spinning for me. I am now one of the rarest of the rare. Usually a person has either AP or AU. I have been diagnosed with both. Something that is really never seen.
I am a 17 year old, a senior in High School, I have dreams of going to Winthrop and teaching art to high schoolers. But all of this is uncertain now. I am so sick I can barley get through my day now. My immune system is almost non existent at this point so I currently have mono, swollen tonsils, an enlarged spleen, severe bone pain,and much more going on, all on top of having Ap and AU.
I am on daily steroids to help get ride of all the infections in my body and then we are going to work on my immune system and then hopefully the AP and AU.
I was told that the doctors only concern is my quality of life. This quit honestly scares me alot. I cry still thinking about what my life may be in 2, 3, 5 years.
So now that you know a little of me story I hope that some of you may feel better about your situations.
~Heather
THE DOCTORS ARE WRONG there are alot more then 37 people with this I found a group of 64 on facebook and a group with well over 300 on yahoo!!!
Hello, my name is Anna and I am 22yrs old. I live in Montana, U.S.A.
I was diagnosed with Aquagenetic Urticaria about two months ago. I never thought anyone could be allergic to water. People ask me all the time, "how can you be allergic to something that makes up 75% of your body?"
I have come up with some clever come backs for the outside world that doesnt believe an individual could be allergic to water. I will pass them on to those who need a clever come back.
1) I mix my own hydrogen and oxygen
2) I am H20 intollerant- I took that from Nemo, the movie.
3) I drink powdered water
4) I can consume dehyrodrated water
5) I'm not sun burnt, I'm just allergic to water!
Although I have turned this into a big joke with all my friends, I recently realized I won't be able to snowboard which is the best thing to do in the winter when you live in Montana. I can't move to California or Florida because of the heat and humitity. Seattle....went there to visit for a weekend with no rain coat! Delivering Pizzas in the rain and being allergic to water *****!
I have been medicated, with a generic version of Zrytec and when I have a reaction I take another pill called Hyroxyzine. I didnt see that mentioned in the other posts but I did see a doctor rescently and he had another name for it. I went to this doctor because I felt a tighting of my throat while visiting Seattle, Washington. The doctor believed it had nothing to do with my allergy, which was a relief. Although my condition is external as of now, if I had not gone and gotten a second opinion when I initially went to find out what was making me break out, the condition could have lead to my throat swelling up. I do carry an Epi pen with me at all times. This adrenalin rush injection is supposed to save my life if the reaction becomes life threatening. the only problem I am deathly afraid of needles, and now I carry one wherever I go.
I first noticed my reation this last summer floating the Clark Fork river. I became red and shakey. Now that I think back on it I used to get a reaction when I got out of the shower in Middle school and High school. This reaction was occasional and usually only consumed my legs. This first apperance, although noticable, never lasted more than 10 minutes after a shower so I assumed it was the heat or water pressure. Only now, 6 years later, has the reaction is full blown. Every time I sweat, cry, brush my teeth, or get wet in any form, I have a reaction. The dermatologist that diagnosed me believes the symtoms will disapear within six months to a year. After reading the above comments I am not to sure. Most of you said you've had this allergy for 4-40 years! I am blown out of the water!
WE NEED TO START A CONVENTION!!!!!
I want to talk and meet people with this disorder. I am so glad I located this site to get started!!!!!
Everyone! Please keep this going, the more information we can bring together the better!
I was diagnosed with Aquagenetic Urticaria about two months ago. I never thought anyone could be allergic to water. People ask me all the time, "how can you be allergic to something that makes up 75% of your body?"
I have come up with some clever come backs for the outside world that doesnt believe an individual could be allergic to water. I will pass them on to those who need a clever come back.
1) I mix my own hydrogen and oxygen
2) I am H20 intollerant- I took that from Nemo, the movie.
3) I drink powdered water
4) I can consume dehyrodrated water
5) I'm not sun burnt, I'm just allergic to water!
Although I have turned this into a big joke with all my friends, I recently realized I won't be able to snowboard which is the best thing to do in the winter when you live in Montana. I can't move to California or Florida because of the heat and humitity. Seattle....went there to visit for a weekend with no rain coat! Delivering Pizzas in the rain and being allergic to water *****!
I have been medicated, with a generic version of Zrytec and when I have a reaction I take another pill called Hyroxyzine. I didnt see that mentioned in the other posts but I did see a doctor rescently and he had another name for it. I went to this doctor because I felt a tighting of my throat while visiting Seattle, Washington. The doctor believed it had nothing to do with my allergy, which was a relief. Although my condition is external as of now, if I had not gone and gotten a second opinion when I initially went to find out what was making me break out, the condition could have lead to my throat swelling up. I do carry an Epi pen with me at all times. This adrenalin rush injection is supposed to save my life if the reaction becomes life threatening. the only problem I am deathly afraid of needles, and now I carry one wherever I go.
I first noticed my reation this last summer floating the Clark Fork river. I became red and shakey. Now that I think back on it I used to get a reaction when I got out of the shower in Middle school and High school. This reaction was occasional and usually only consumed my legs. This first apperance, although noticable, never lasted more than 10 minutes after a shower so I assumed it was the heat or water pressure. Only now, 6 years later, has the reaction is full blown. Every time I sweat, cry, brush my teeth, or get wet in any form, I have a reaction. The dermatologist that diagnosed me believes the symtoms will disapear within six months to a year. After reading the above comments I am not to sure. Most of you said you've had this allergy for 4-40 years! I am blown out of the water!
WE NEED TO START A CONVENTION!!!!!
I want to talk and meet people with this disorder. I am so glad I located this site to get started!!!!!
Everyone! Please keep this going, the more information we can bring together the better!
Hey all...
I've been suffering with aquagenic uticaria since I can remember.. Probably since I was 12 or 13. (i'm 24 now) Only in the past year has it gotten worse. I was diagnosed with Cronic Ideopathic Uticaria which started out of the blue last year, and after taking antihistamines, even thought it keeps the chronic hive breakouts to a minimum, the aquagenic bit seems to gradually be getting worse?? Its started to spread to my for arms and scalp now.. And started to happen when I work out :/ Im on loratadine, neo clarytine, ranitadine and doxepin..
My doctor doesn't seem to acknowledge it though .. And most of my friends think Im bat sh*t crazy..
So yeah.. suppose its nice to know I'm not alone, although I wouldn't wish it on anyone. don't think its as rare as we think either, judging by the number of posts?? Perhaps most people put it down to sensitive skin like I did for about 10 years!
P.
uk x
I've been suffering with aquagenic uticaria since I can remember.. Probably since I was 12 or 13. (i'm 24 now) Only in the past year has it gotten worse. I was diagnosed with Cronic Ideopathic Uticaria which started out of the blue last year, and after taking antihistamines, even thought it keeps the chronic hive breakouts to a minimum, the aquagenic bit seems to gradually be getting worse?? Its started to spread to my for arms and scalp now.. And started to happen when I work out :/ Im on loratadine, neo clarytine, ranitadine and doxepin..
My doctor doesn't seem to acknowledge it though .. And most of my friends think Im bat sh*t crazy..
So yeah.. suppose its nice to know I'm not alone, although I wouldn't wish it on anyone. don't think its as rare as we think either, judging by the number of posts?? Perhaps most people put it down to sensitive skin like I did for about 10 years!
P.
uk x
I've had this since my mid-teens but compared to some people on here, it would appear that I have a mild form of this like Sinomen59 and am able to ignore the 'sploges' until they go away. I've never been to the doctor about this because I figured it was a 'water allergy' and I take anti-histimine before going swimming but it ever worked- now I know why! They also come up when I sweat but it's only mildly uncomfortable. I'm wondering about going to the doctors just to 'let them know' or maybe try and remeber to mention it next time I go as it seems it's not nearly as rare as they think! I only searched tonight because they mentioned the name aquagenic urticaria on TV and said how rare it is!
Anyway just wanted to let people know thy're not alone and it may go away as i used to get another form of urticaria which was big raised white lumps with red surround which i only came up in when I was ill and too hot- I had it for about 5 years and used it as an indicator of when i was getting sick as it was often the first symptom!
Anyway just wanted to let people know thy're not alone and it may go away as i used to get another form of urticaria which was big raised white lumps with red surround which i only came up in when I was ill and too hot- I had it for about 5 years and used it as an indicator of when i was getting sick as it was often the first symptom!
I am 35 years old, I also have Aquagenic urticaria. I have had them since I was little, I am 35 now, they look like mosquitos attacked me while I was getting wet. I have learned to ignore the itch and within an hour or so they go away. I swim and every thing I just am very itchy, i get them on my arms, neck, back and shoulders. i have never tried this but I found this on a website:Water urticaria is treated with a cream called capsaicin (Zostrix) that is applied to the irritated skin. This is the same treatment used for shingles. Antihistamines are of questionable benefit since histamine is not the causative factor in water urticaria.
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