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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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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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Hello fellow suffers,
My name is Celia Burton and I have aquagenic urticaria.  I've had it for 10 years and I'm still suffering. I get the little stingy, itch bumps around my waist, sides, chest, thighs and back.  Sometimes it''s in one or two places and not the other and sometimes I get a free pass and don't get them after showers, why I don't know but I'm so grateful when that happens and I thank God in tears. I was staring to get them in the morning which happened for about a week, but they stopped.  Who knows why they came or why they stopped but I did start a new med. which I stopped taking.   I found that while my skin is still wet I start rubbing alot of Aloe gel which cools helps the itching alot. I'm reading alot about drinking Aloe so I will probably try that soon.  I hate taking showers but I like everyone must. I do limit my showers to 2 to 3 times a week and avoid doing anything that will make me sweat which irritates my condition.. I understand that natural herbs take at least 2 weeks to take affect.  The anti-histamine use to work benadrly ,ranidine, zyertex combinations don't work anymore. My immune system is so overactive that they aren't  effective anymore. Three days ago I started taking Bio-tumeric. Tumeric is a spice used in cooking mostly by eastern cultures, but studies have shown it has anti-inflammation properties and balances the immune system. What we have is an overactive immune system and our mast cells send out too many anti-histamines, over reacting to any irritant which means that our condition is an autoimmune disease it's akin to lupus and shingles. I'm grateful it's not one of those, because these hives are hell enough. Also funnel and camomile are other herbs said to help.
I find my life so restricted by this problem. No swimming or jacuzzi,limited exersize no fun.
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Hello all. My name is Delonie. I have finally found out that I have this. I have had this for about 9 years now. & it's a constant battle. I was told I could be allergic to chlorine, but even when swimming in a lake or simply sweating I get extremely itchy so the chlorine allergy just never made sense to me. It seemed chlorine did some how make it worse, though. I finally after all these years have broke down & researched my symptoms & figured out this was what I most likely had! & today my doctor told me she was 99.9% positive that I was right. I am being give a cream to try before taking showers & bathing & hopefuly it will help. I NEVER in my wildest dreams would have believed someone could be allergic to WATER or yet their own sweat! :/ I do have a few medical problems so this being added is not what I wanted! This all started around the time I had my 4th or 5th brain surgery & it seems over the years it has just gotten progressively worse. I break out into light red (slightly purple/blue tinted) rashes. I love taking showers & baths, but this condition has ruined it for me. :( I like work out & exercise, but yet I know what I'm done I'm extremely itchy from the sweat on my body. Rain makes me itchy as well! I can't enjoy any water!
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I have it too- since I was in jr. high 20 years ago.
Mine has gone through stages of not being so terrible and other times when it flares quite a bit.  I recently started a food challenge diet to try to identitfy food allergies and now my skin is acting up almost around the clock instead of only when I'm showering or swimming.  I am scared it is from me drinking the water!  I keep getting a coughing/choking feeling!  My husband just drove to the store to pick up some distilled water to see if that helps.
Does anyone's condition improve with a low-stress lifestyle?  It almost seems like it must be hormone-related because so many of us started experiencing it in puberty.  I also am allergic to dust mites and various molds.  Is that a common trait with this condition?
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I thought this allergic was rare, but so many people have it. I just read here.
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2106313 tn?1333912994
hey i've been living with the same thing for three years now, after i had my first child. my doctor told me i was his first case he's ever seen. but i think there are more people out there like this than our doctors think. there is no treatment and no cure but there arent for alot of things. and it hurts me that i won't be able to do alot of things with my children that most parents can do. but i keep doing my reseach and keep urgeing my doctor for help and maybe one day someone will come up with something. and now that i know i'm not alone in this battle helps me along the way!
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Aquagenic Urticaria. is a paralysis in the skin nerves. The wind energy can not move inside as it lacks mineral the Calcium. This calcium can be sent through the skin by lighting holy lamp with ghee and few combination of herbals. If you need more information please mail me.This disease forms in the womb itself or the calcium in the skin nerve is absorbed by the sudden development of Phosphorus and iron in blood that passes through the skin nerve. I wish to offer few suggestions. Please contact me.
iyerindianr(at)gmail(dot)com
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I also have aquagenic uticaria. I was diagonoced several years ago. Have any of your doctors mentioned xolair shots. It has really helped with the hives. Before taking the shots I had tried all the antihistamines which would show only small improvments for short periods of time. If anyone has questions feel free to email me at ***@****. I am more then willing to talk to anyone that has concerns with having this. I know it can be more then frusterating.
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I do not have this, but I have other allergies (including hives, but they never last more than an hour and I have no idea what brings them on as they are rare).  However I have 2 ideas for y'all.

(1) (You can read about this in the OmegaRX Zone, by Dr. Baryy Sears, PhD Lipid science).  Inflammatory cytokines are made in the process of metabolizing non-omega-3 fats (maybe omega-6, not sure).  The enzymes used to metabolise these fats are the same ones that metabolise omega-3 fats.  If you take a high dose of omega-3 (7-9g/day) it uses up the enzymes so you cannot make inflammatory cytokines.  (So obviously this won't help you if they are already made, but will prevent more being made - so like other allergy drugs like Flonase, start it the day before you need it).  It uncrabs my head and I have the worst hayfever my allergist has ever seen.  Also, I have seen studies showing high dose omega-3 can actually cure (not just treat) psoriasis.  So I think this strategy might be particularly useful with skin allrgies.

(2) Someone said their problem arose after a trip to the dentist.  Dentists used to give laughing gas, which destroys vitamin B12.  I belonged to a forum of people with methylation problems, and they found that some of their allergies improved when they improved their methylation.  Well, I also improved my methylation and the only thing that improved was allergy to bug bites (a skin allergy).  So maybe it would help your skin allergy.  You improve methylation by taking active B vitamins and TMG (betaine).  As an example, an active B supplement is made by Thorne, I think Pure Encapsulations also makes one (not sure, I use Thorne).  These include methylcobalamine and adenosylcobalamine (active B12s), methylfolate (active folate), and P5P (active B6).  I purchase the TMG separately from Soloray in 1g dose.  Others on the forum found that increasing methylation increases the need for potassium, 500mg or more (we take as powder in a drink).  You cannot do this if you have any sort of kidney problem as then you cannot excrete potassium.  I am not a doctor.  But electrolyte problems are serious.  What happens is that many people have a malfunctioning methyl cycle (that's a biochemical cycle) due to either genetics or poor diet (junk food, overprocessed food).  The methyl cycle enzymes use B vitamins and betaine as cofactors.  Some people genetically have enzymes that cannot hang on to these cofactors, others are just not getting the vitamin cofactors in their diet.  The methyl cycle makes methyl groups (carried by SAMe, the universal methyl donor, throughout the body) and methyls are used to turn on/off chemical reactions.  So w/o enough methyls many reactions that should be ON are left OFF.  When you allow them to be turned ON, you open up additional biochemical pathways which also need different vitamin cofactors (that's why they are called VITAMINS, they are required for life!).  So you really should take a good multi vitamin.  But the most serious need will be for more potassium...at least that is what we have found.  But we take many, many other supplements as well as once your biochemical pathways are working ALL vitamins are needed!  You are on your own if you try this.  I suggest researching the methyl biochemical cycle.  Here are a few sites that might help to get you started: http://www.enzymestuff.com/methylation.htm
http://www.heartfixer.com/AMRI-Nutrigenomics.htm
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I forgot to mention that with solution (1) (which is the safest solution because you don't have to know anything much to try it), you need a very pure omega-3.  Pharmaceutical grade.  Because otherwise there will be algae fats in the omega-3 and they will irritate your stomach at that high dose.  This is all spelled out in the book by Barry Sears (who also is the author of the Zone Diet books, also based on biochemistry).
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2127744 tn?1335371348
Good morning everyone. I am a student currently enrolled in a rare diseases course and wondered if anyone here would be willing to talk to me about your personal experience with Aquagenic Urticaria: how you were diagnosed, your symptoms, and how you felt after receiving the diagnosis. I recently gave a presentation on this disease, but I was curious to hear from those who have it since I know AU can vary from person to person. Thanks ahead of time and have a great day.
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I take fexofenadine hydrochloride (180mg) and it reduces the big hives to small dots that are much less noticeable (good for when out in public to spare embarrassment).

I have had this condition for 4 years, and I believe it was triggered by the contraceptive pill (which I continue to take; I'd rather have hives than a baby).

It doesn't have to ruin your life if you don't let it, I live normally and just take it as it comes (although I unseratand many endure much harsher symptoms than I). Keep your head up.

To the student who posted above me, I would be happy to answer any questions you may have, let me know how I can contact you.

And to anyone recently diagnosed, welcome to the family.
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AT LAST!!! I developed 'eczema' and asthma when I was around 11 years old with the onset of puberty. I have always thought there was more to my so called eczema than what the doctors said. I have gone through years of varying symptoms and have just learnt to live with it. As above, showers, swimming and worst of all exercise brings on symptoms. I also believe I am allergic to dust and mould. While pregnant with my second child the above all went into overdrive and I did not sleep for many months as just lying in bed formed so much heat that the itch would keep me awake and tossing and turning all night. Although there is no cure it is so nice to possibly know that I have a disease with an actual name and not just thrown into the category of eczema.
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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 :)




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I have always had an allergic reaction to water, whether its from showering, swimming pools, lakes, ocean water, rain or sweat. I get red splotchy itches mostly on my stomach, chest, and neck. but it is not sever and usually goes away fairly quickly once i dry off. I am 31 years old and have been this way as long as I can remember. I have never really researched this or the cause. I just tell people I'm allergic to water. I guess that my situation is not as severe as others I have recently read about, but maybe its a milder form of the disease?
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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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How many of you that have Aquagena Uticaria are also allergic to Sulfa based drugs?
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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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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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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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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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I was diagnosed with Aquagenic Urticaria in 2009, although it has been an issue for as long as I can remember. I was diagnosed when I went to see a dermatologist for an unrelated case of pityriasis rosea. I asked him if the pityriasis rosea had anything to do with the hives I get when I take a shower or sweat he said no that is a completely different condition. He then asked me a few more questions and the informed me that I have aquagenic urticaria. This is something I have had since I was a child so I am very used to living with it. It is just a normal but very miserable part of who I am. I try to take quick showers and dry off as quickly as possible. I live on the gulf of mexico and I love the water. I also love to swim, so I have to take an allergy medicine daily if I want to swim without to much misery. I stay indoors most of the day and try to find shade when I do have to be outside. The itching and burning are so intense that I often feel like I will go insane if I can't scratch it. My family doesn't understand how frustrating it is just to take a shower. I have a sister who can somewhat relate because she has the same symptoms and even the hives when her skin is exposed to cold air.
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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 :)
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Hello

I too suffer from Aquagenic Urticaria.  I have never been fully diagnosed, but my systems are that of the same.  After any exposure to water whether it is from a shower, pool, lake or bath it is all the same (well actually the hotter the water the worse it is!), 10 mins after my legs and arms itch and prickly burn so bad I feel like I would rather rip off my skin for some relief and this feeling last just over an hour.  Some times there are very slight red bumps (hives) but most of the time there is no physical evidence.

The worst part about this is that I LOVE to swim!! I am currently pregnant and even before I was pg, I was over weight, so swimming was and still is my favourite way of working out because it reduces the strain on my joints.  

Now because of this reaction to water, I have been almost scared to even step foot in a pool (at least salt water is better than chlorinated).  A few weeks ago now I was up at our cottage, relaxing on the dock, and I totally forgot to put sunscreen on.  Oops, but here’s the thing! Yes I got a sun burn, not bad enough that I was blistering, one of those burns that last for about 2 days and turn to a tan…. The following day I decided to tough it out and cool off in the lake as I was cooking.  I jumped in quickly and climbed out again, bracing for the itch, it didn’t end up coming….. so I went back in and spent a little longer in….again no itch.  I was soooooooooooo excited to have discovered this!  I had a little bit of itching in locations that I didn’t have a sun burn, but it was nothing in compared to what it normally is like.  YEAH!!!

Now I warn you, the burn only lasts for a few days and for me the no itching only lasted for about 2-3 days after the burn faded away.  I’m not saying go get a sunburn, but it helped me…..

It is now the end of the summer and my burn is totally gone and I had an extreme episode this morning….. I would be heading to a tanning bed, but being 8 months pregnant I can’t do that.  I hope my discovery helps somebody have relief for a few days at least
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I have it also it is so embarrasing i take allergy medicine with lortadine in it and it seemed to work for a little while but it no longer helps me. Whenever i sweat, go in any types of water, or sitting at the beach makes me have the reaction.. The dermatologist also told me that aquagenic urticaria is rare and that there is no cure yet because it is so rare:( i get itchy small bumps (they dont burn) just itch on my back neck and torso area but no where else. I really am getting sick of this because its becoming a huge problem in my life. This all happened when i was 13 after i had an allergic reaction to penacillin. Immediately after i began getting these symptoms. :(
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I am 63 years old and have had aquagenic uticaria since I was 14.  I still have it today.   Everyone has my sympathy who has this condition. I use atarax just before showering or swimming (fortunately a mild dose of a 25 mg) is all I need to help with the itching.  I have used this since I was 19 years old and have had no side affects from it.  It may make you slightly sleepy.  (It does not stop the itching just helps reduce the time of it and the severity of it)I also find now that I am older that using as hot water as you can stand and then hitting with straight cold for a very very short time after down showering can reduce the itching.  I also use the new microfiber towels and only PAT do not rub dry and that helps reduce the itching.  this is a hereditary problem and as someone above said it is not a true allergery to water.   I was told over and over that it is a physical reaction that when water hits your body something comes to the surface of your skin and when water hits that that is what causes the hives.

My mom took me to 5 doctors who all told her the same thing in the early 1960's.  that i had aquagenic uticaria.  They told me to never swim alone because you never know how severe a reaction you may have at any time and the way you react could change.

I was told also that it is hereditary and both of our sons have some form of this condition (fortunately neither is as severe as I was when younger).

I found out an aunt has a form of it.

I have had problems with my own sweat and rain causing me to itch and have hives.  When hospitalized the sheets are thin and no padding to protect you from the vinyal cover on the mattress, so your sweat will break you out in hives.  therefore after this happening several times in the hospital they now tell me to bring my own bedding which includes a mattress pad.

As I face getting older and not seeing this condition going away just the severity of the reaction changing (I still itch all the time  just how severe is the change)  of course my mind thinks how in the world if I land in a nursing home is this condition going to be handled?  
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3364958 tn?1347224651
I am 23, from Australia and sadly suffer and have been diagnosed by a specialist with aquagenic urticaria since the age of 14, i become rashy, short of breath, huge arse whelts (yah not hives), and sometimes go into anapylaxis.

I reccomend that anyone who thinks they are suffering from this condition to see a specialist about it. purely because it is a very very very rare condition. this is not to say that you dont have it but.......
a. people commonly mistake their reaction for either cholenergic urticaria (quite common condition reasonably easily treatable) or they have the shower too hot, or they are allergic to something in the water like cholrine or a mineral rather than a reaction just from the H the 2 and the O hitting the skin (mistakingly reported, but aquagenic urticaria is the reaction to pure water rather than specific components like chlorine).
b. if you people who think you have it but havent been diagnosed, actually have it, then go find out because the more people who have it the more likely a proper research will happen and we may find answers :) at the moment research papers (as in information published in medical journals and not on the internet) havent actually proven that this is a histamine thing, which is explains (kinda sorta) why sometimes antihistamines dont work on all people with this condition (like me sometimes).

i have a question though. i break out in welts, and my face cracks, and bleeds. im ok and i deal with that. but i am curious to know if this happens to other people with this condition and how they deal with the constant "OMG WHAT THE HELL HAPPENED TO YOU" response.

one thing for those who are down. i struggle (as im sure many of you guys do) with convincing people that you actually have this condition as a standard response is often "how can you be allergic to water, you need it to live." the best comeback is "what do people with asthma struggle with??"

p.s i know this is bad grammar, yes english is my first language and i went to a decent school but my brain isnt working today sorry :(
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I live in the UK and have just returned from a hospital appointment with a dermatologist who my GP reffered me as soon as I explained my symptoms. She told me I have Aquagenic Urticaria and sent me for blood tests to see if there is another underlying problem as apparantly it can just be a symptom of something else. In my case she suspects it is related to my underactive thyroid  but did mention hodgekins lymphoma, did anyone else have this water reaction as a symptom of anything else? The dermatolgist prescribed me some anti histamines to take 20 mins before I have a bath/shower which she said should relieve most of the itching and hives but if not she also gave me some menthol in aqueous cream which apparantly cools and moisturises. Hopefully these will help as my symptoms have been progressivly getting worse for 8 years now!
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Hi,
Just recently I have discovered that I have Aquagenic Urticaria and have had it for 3 years. The doctors I've been to have been unable to tell me the problem until just two days ago when I had gone to an allergist. I, being only 14 and in highschool, have been in shock due to this rare allergy being unheard of to me. I have no clue what I can do, besides what I've been told to. They gave me Zyrtec, in which I have to take daily, as well as two inhalers and a set of EpiPens. I feel so alone :(
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I have had uticaria for over 10 years now, I have verious prescribed antihistamines that I take daily. It keeps me up on a night, and effects my daily routine. I get the hives all over my body, sometimes I scratch until I bleed. All I can suggest is to see a dermo
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Hi all. I´m 45 and I have had it now for 39 years.
Male, live in Gothenburg, Sweden
Something that does work for my skin;
Neem oil from India or Pakistan
Alright, Happy New Skin Year to all.
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I also live in Missouri and have the same problem. It started when I was about 10-12 years old I am now 26 and it still happens. Rain water lake water pool sweat anything that gets on my skin. Mine is only on my upper arms my torso that's as far as it goes, but it terrible and I am not taking anything for it. I am sorry to everyone that has to deal with this!!!
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Hello, i just read your post and saw that you have the most recent one. Though I don't have the disorder, I am doing a paper on it and I'm wondering if you would be willing to answer a few questions about it from your own experience?
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Chronic urticaria is usually associated with some sort of manifestation of an autoimmune disease. I have a rare disease that has a vast array of symptoms and did not experience urticaria until 2008. My urticaria is caused by various things - water, temperature change (hot to cold, cold to hot), clothes touching skin, sun, etc. I lost tons of sleep because of this tortuous symptom. Then, thanks to my wonderful doctors, they put me on Doxepin. The dosage is 60 mg at night. I'm able to drift into a deep, restful sleep, and the urticaria is not active. I know this works because I've experimented by going without the Doxepin for a few days, and the urticaria comes back. Doxepin was used mainly as an anti-depressant for many years, but it was also discovered to suppress an overactive immune system especially regarding urticaria. If any of the other listed advice doesn't work, then please try Doxepin. It will bring you rest, relief, and peace of mind. Good luck!
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I am 47, I have had this since 14. One of my sons has it as well (he is 24 and started about same age as for myself) - so it IS hereditary.
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Update (4 years later) No changes.
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I am in Australia and I have aquagenic urticaria. I itch after being in any type of salt water and my face burns. I also itch after showering. Would love to know if any types of shower filters have helped anyone?
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I do have the same condition with water, sweat, sea and few more, and also I have fair skin...
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I have had this my entire life and it is getting worse with age. I know what yo are going thru. Hot water will set you off worse in the shower or bath. Luke warm almost cold is show to make less hives when bathing.
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this is the same thing I have. Like when i take a shower, it rains, i go in the pool/beach, or even if I sweat, i get these little red bumps that itch a lot, and i seemed to notice that they go away right when im completely dry. I've never went to the doctor for it since its not severe, but Im just curious about what its called, and whats causing it,.
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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.
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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.
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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
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15492024 tn?1440935975
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.
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15545184 tn?1441272517
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.
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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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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
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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.
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Can you please tell us what was the medicine you used to cure youself.
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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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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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