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Avatar universal

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
I read an article about this on BBC, they said that 1 in 230 millions or 32 people in the world have this illness, I think I can say that its more people than 32 in this thread that has it, so its clear to say they don`t know to much about this illness. I have had this myself for four years from 2002 till 2006, it was the closest to hell I have ever been. I was scratching my body 24/7 like I always had 1 million mosquito bites all over my body. When I came in contact with water being shower, rain, sweat or whatever it was like having acid poured over your body. I went to 10-15 different doctors and everybody had a new diagnosis for me and how to treat it, and most of them was not even close to what it was, so I understood with time that they did not have a clue of what they were doing. In 2006 I met a teacher that had a husband who have had the same hell I was going through and she gave me some advice since he had been healed from the medicine he was given. I was ready to try anything, as Im sure you all are as well, so she told me to go see a homeopath. I did and she gave me the diagnosis urticaria, I have recently learned that it was Aquagenic Urticaria I had, and that urticaria in it self is a whole lot of different illnesses. Anyway she gave me some medicine that really worked very well, in 6 month after I started the treatment I was healed and it has not come back in the 10 years since. I wanted to share this with all of you so that you can try this as well if you like to, it really helped me and it also helped the husband of this teacher I had, he had also had it for 20 years before starting the treatment. Hope this helps since this is something none of us should live with.
Helpful - 2
2 Comments
Can you please tell us what was the medicine you used to cure youself.
Please tell us the name of the medicine the homeopath prescribed to you.
Avatar universal
I'm 20 and I've been braking out now for about 6 years. Doctors never really bothered to completely diagnose me for almost 5 years, I was just put on antihistamines and each time I would complain they had stopped working they would just up my dose. I have always know what it was and it wasn't until the start of this year that my doctor sent me to the hospital.
Although my experience to being diagnose was very nice as often doctors had never heard or it or just didn't understand and therefore some of them presumed I was over reacting and they where then ofter rude to me; in the end I had to take  pictures of what was happening and show them in order for something to be done.
My most recent doctor really helped, he explained all about the h1,h2 and h3 receptors and after he had gone through it I was able to google those terms and look it up a bit more in order for me to understand. I now take 360mg a day of fexofenadine hydrochloride for when my skin comes in to contact with water and also 300mg a day of Ranitidine as I was complaining of stomach problems and the doctor said this was to do with too much acid being built up in my stomach because of this allergy, and so far so good as both these dose's have been working for me for almost 8 months now; longer then any other medication every has :).
I know this is long but I hope this has helped, please don't be afraid to write back :)!

Katie :)
Helpful - 1
Avatar universal
I'm a 20-year-old female from Belgium and I've had aquagenic urticaria since I was 12. It just appeared out of the blue one day. It started on my back (the upper part), then slowly spread (day by day) to other parts as well. Now everything is "affected" after contact with water, except for my feet, legs and hands. I used to shower daily at that time - for the last two years I've been trying to shower only 3 to 4 times a week, only for a few minutes (except when I have to wash my hair).
I get these itchy(!) hives when I take a bath, when I shower, when I go swimming in a swimming pool or in the ocean, when I shower, etc. Even my own sweat triggers a reaction. Whether the water is cold or hot makes no difference. They usually appear after about 5 to 10 minutes, and it takes about one or two hours for them to disappear again.

I went to the dermatologist and she gave me an ointment with cortisone which I had to use on the hives when they would appear. The ointment made the hives disappear faster, but it did not prevent them. The dermatologist then submitted me to some allergy tests but nothing came out (except for an allergy to cobalt and nickel). So she concluded that it must be aquagenic urticaria, and told me that nothing could be done about it. She mentioned that it was possible to take other, more advanced, tests, but that these were very expensive and that they rarely produced results.
She gave me a prescription for antihistaminica (Zyrtec / Ceterizine), which prevents the hives when taken daily. This works for me, but I only use it when I go swimming in public or something like that - I don't like taking too much pills, and certainly not if I feel tired after taking them.

As for my skin in general: it's always rather dry and sensitive. Some moisturizing creams even give me allergic reactions (other than the aquagenic urticaria). But whether my skin is hydrated by a moisturizing cream or not, doesn't matter: the hives always appear.

I also seem to have some kind of allergic rhinitis, which causes symptoms related to those of having a cold. I recently went to an allergy specialist, had some ***** tests on my arms, but I wasn't allergic to any of the allergenes I was tested for. Still, the symptoms of allergic rhinitis remain...

Recently, I had to take a cure of 10 capsules of Diflucan, one capsule a week, because of recurrent vaginal yeast infections. (The active ingredient of Diflucan is "fluconazole".) This had an impact on my aquagenic urticaria. After one capsule the number of hives severely diminished, and after the second capsule, they were completely GONE. No hives, no itching, nothing. This lasted for about 10 weeks, but as soon as I stopped taking the Diflucan, the hives gradually came back. A few weeks later, the doctor prescribed me a second cure of Diflucan, and the same thing happened: after the second capsule, my symptoms of aquagenic urticaria completely disappeared. I went to see an allergy/immunology specialist, but he simply said that he didn't know where that reaction came from - and refused to think deeper about it.
(If there is anyone who has similar problems, or has a similar reaction to Diflucan, please let me know.)

Hope this was detailed enough :)




Helpful - 1
Avatar universal
My friend had this and was treated with UVB lighting 3 times a week for 9 months at a skin and cancer clinic and that worked for her.  Good luck
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Avatar universal
I have been diagnosed with aquagenic urtica and have been under a skin Consultant with the NHS in England.  It took 3 months to diagnose the problem.  My skin burns in contact with anything warmer than warm water,  Occasionally, my legs react with small skin bleeds and itch like mad.  Around my waist i get raised lumps that are similar to what you get when stung by a stinging nettle.  I have been advised not to go into power showers, or use jacuzzis, or swim against water jets in swimming pools.  I haven't done so.

I was treated with UV light, Ranitidine ( a beta blocker that has a side effect that blocks messages going from the stomach to the skin) and Xyzal ( a strong antihistamine) that deals with the messages (what feels like bee stings) if they get to the skin.

In the early stages I also washed with Oilatum gel to keep the skin moist.

Since this treatment I have managed to keep my skin under control but now and again it itches or in a shower occasionally feels literally as if razor blades are being cut into my skin.

I hope this experience might help some out there especially the use of the |UV light and the medication.

Good luck
Helpful - 1
Avatar universal
Hi All
I had Aquagenic Pruritus for several years, and found that high doses of antihistamines worked very well before a shower.
However the thing that CURED it was going to the local hospital and receiving special UVB light treatment from the TLO1 spectrum. After many sessions the problem has completely gone.
Ask for a referral to a Dermatologist and ask for TLO1
Helpful - 1
1457692 tn?1285547270
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
Helpful - 1
Avatar universal
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!!!
Helpful - 1
Avatar universal
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!
Helpful - 1
Avatar universal
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
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Avatar universal
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!
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Avatar universal
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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974335 tn?1248024628
I am 44 years old and suffered from this on and off over the years, some times it's really bad other times nothing. One thing I have noticed is water temp' - if luke warm or cooler it makes the itching worse. If I go out of Birmingham (UK) -usually Somerset, I get minimal or no symptoms here or elsewhere, there must be something in the water - I know there's Fluoride in the Birmingham water along with Chlorine so maybe this is factor. I also surf regularly and sea water has minimal effect. Swimming at the the local baths can make me itch but far less than home showering, so maybe the fact that excercise can calm it - by the way, I only itch after I have dried myself - usually about 5-10 min's after doing so when ever or where ever affected. Antihistamine can help an hour BEFORE showering or massaging the area rather than scratching - I get it all over my body. Try tricking your itching by getting in and out of the shower for different periods and / or different temperatures. May be there's a food link depending on what's been eaten before showering, or state of mind /stress, who knows, so may variables??? Good luck to you all!
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Avatar universal
I have aquagenic urticaria but it's almost completely controlled by a daily antihistamine tablet.  I have had it for around 23 years, since I was 10 or 11, and I think it's fairly mild, although if I don't take an antihistamine for a day or two I know all about it!  Even with the daily antihistamine I still get itchy after a shower but other than that it doesn't bother me at all.  

I have generally changed antihistamine every 4 or 5 years as they become less effective as your body gets used to it; also new and more effective drugs are brought out every so often.  I currently take Misolastine (or Mizollen) once a day.  I'm not sure if makes me drowsy as I take it before I go to bed.  I have also found Clarityn (Loratidine) and Zirtek (Cetrizine) work quite well.  It's important to take the antihistamine daily as it needs to build up in your system in order to get (relatively) continual 'protection'.  
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Avatar universal
From supercoolperson 3 mins later....

Another thing I want to mention which is weird ( and adds to my doubt that I have this condition at all) is that there are three patches where the hives/rash used to appear frequently which are now perminently light brown. Almost like these areas of the rash have died and don't flare up anymore. They've been there for a few years and I can't remember what i did, if anything, to make them go this way. These patches, strangely, seem to always have tiny flakes of dead skin on them, like this skin is growing and dying faster than the skin around it. I don't mind them, as long as they don't all go like this or else I'll be covered in light brown patches... anyone else had this?
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1 Comments
I having the same problem and brown/yllow pigment is getting bigger.And I only have water allergy to this part of body.I must say I getting pretty scared.I`ve been to doctor,and some creme,but even thou they know anybody who have allergy to water,just to give life to dry skin.
I will go in near future to specialists to try to remove that brown pigment if it is possible.
Avatar universal
I am 14 years old and have Aquagenic urticaria, I get small hives, they go away after an hour or so, and stay on my belly and chest, but I get them after going in any kind of water, I have the worst reaction after I shower, salt water is almost as bad, but not quite, lakes and rivers I only get a rash and is not quite as bad as the other reactions. I&#39;m scared its going to get worse, have your reactions gotten worse as you have gotten older? none of my friends think I'm telling the truth because they think it isn't possible, I sent them a picture once, but they thought it was makeup because I am always doing stuff like that on myself, any advice to get them to believe me?
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Avatar universal
No, however I recently did get some awful and itchy rash briefly. It itches so bad I thought I'd loose my mind. I found Gold Bond anti itch/rash cream with cortisone, so it kinda numbs the area itching and u don't feel it! Brilliant idea and it worked wonders so I keep 2 bottles at all times on my shelf. When I was out early on and neede, I used orajel (it numbs the same way right). Yes it was wonderful and worked a charm! Try it!
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Avatar universal
Hey i also have this. For 1st year or to i was given creams to rub on skin but couple yeara later only found out it internal so creams dont help. A chemical in your body is released when u come in contact with water or either if its too cold or too warm in temp. Im on 3 different types of antu histamines which sort of help. Sometimes my skin itches for hours its that bad. Had it from i was 17 and im now 28. It has eased abit over the years so im hoping a few more down the line il acc be able to enjoy taking a shower lol havent been in a swimming pool or the sea in years and it *****.
Eddie
Helpful - 0
Avatar universal
Hi, I am just now realizing that I probably have aquagenic urticaria as well. my doctor said it was just allergies, but i have the same symptoms described here. Everytime I shower, i get itchy hives on my torso. if its a longer shower, they spread more. I can get them no matter what water temperature, but i feel like heat activates them or something. Does anyone else notice this? Like if i am laying out at the pool, i am fine until i go in the water and when i come back out and lay in the sun i get them all over my body, including my face. I notice when i go inside away from the heat, they slowly stop itching and go away. Has anyone else noticed this as well? Do you think it is a part of aquagenic urticaria?
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15545184 tn?1441268917
Start eating haridrakhand an ayurvedic mixture..!!
Zyrtec leaves withdrawal symptoms which is addictive life long! Leave zyrtec!
I was taking zyrtec since 8 years..now I switched to an antihistamine which does not have hydrochloride and started Haridrakhand too. Hope to get off these demonic Hives.
Helpful - 0
15492024 tn?1440932375
I have suffered with symptoms very similar to most of you for the past 18 years. I'm now 28. I do suffer with eczema but when I go swimming or take a shower or even when I get wet from the rain my skin dries very quickly and gets really itchy all over and I break out in a few hives mainly on my back and my arms , Every day after I wash or after a shower I have to moisturise all over, I was prescribed Aqueous cream years ago which I found made my skin too oily and still didn't take away the itch and the Oilatum in the bath use to burn, I have tried a few different moisturisers and I now use a Vaseline moisturiser which I have found works well for me and if at times I feel very itchy I do take an anti-histamine but my skin has improved so much now, its very difficult having to live with this condition at times, for me it feels like it will always be part of me but I feel I've learnt to keep it under control , I hope it gets easier for the rest of you , good luck everyone.
Helpful - 0
Avatar universal
I take Allegra, Not Allegra D, just Allegra, you can get it in 12 or 24 hour pill. It doesn't make me tired... I was so relieved to find this. Give it a try. Not expensive... Good Luck
Helpful - 0
Avatar universal
I wonder if it's water on the skin that's the source or just the vector since people have reported that it can occur when they sweat. It appears to be predominantly on the back and torso. I wonder if it could be something in the clothing that resides on the skin and enters the skin when the skin become wet. I would think that one way to test this idea may be to wash a small area with rubbing alcohol before taking a shower and seeing if that area still breaks out afterward. The water may be just opening the pores and letting in an allergin that sits harmlessly on the skin otherwise. Materials added to clothing that resist multiple washings may stick as nicely to skin as it does fabric. Eliminating certain clothing types seems to have helped many of the sufferers reporting here as well.
Helpful - 0
Avatar universal
I wonder if it's water on the skin that's the source or just the vector since people have reported that it can occur when they sweat. It appears to be predominantly on the back and torso. I wonder if it could be something in the clothing that resides on the skin and enters the skin when the skin become wet. I would think that one way to test this idea may be to wash a small area with rubbing alcohol before taking a shower and seeing if that area still breaks out afterward. The water may be just opening the pores and letting in an allergin that sits harmlessly on the skin otherwise. Materials added to clothing that resist multiple washings may stick as nicely to skin as it does fabric. Eliminating certain clothing types seems to have helped many of the sufferers reporting here as well.
Helpful - 0
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