I have Aquagenic Urticaria does any one else?!

[sonygirl256]

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

[amazingstace]

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?

[djermano]

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.

[Rien634]

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.

[anjie]

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 .

[neerou]

Hello
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..

[qtcloud]

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.

[Irenax]

Well, I have also been suffering from aquagenic urticaria since I was 12/13 yrs old. I am 25 now. I have struggled with it for several years (the unbearable itching and red spots and hives everywhere, every time I take a shower or go to the pool or work out). It started when I lived in Germany, and now I live in Louisville, KY. It has not changed when I moved to KY 10 years ago. I mentioned it to my allergies few years ago, and she prescribed zyrtec (antihistamine). It helps all my allergies, including the water allergy. If I take the zyrtec every day, I do not itch and there are not red spots or hives. Zyrtec does make you quiet a bit tired, but you can take it before you go to bed.

[takari151]

Actually I have the aquagenic urticaria also, And it doesn't just happen in the shower or the bath for me, it happens at lakes and pools, lotin, perfume and even when I sweat, I've had this for at least 2 years. I live in missouri and its usually really humid, And i itch almost all the time frome the little red skin bumps, they usually are from my neck to my lower torso.

[Dr_Aparna]

Hi,
Water urticaria, also known as aquagenic urticaria and aquagenous urticaria, is an extremely rare form of physical urticaria. It is sometimes described as an allergy. In affected persons, water on the skin causes hives to appear within 15 minutes and last for up to two hours.
Water contact can cause aquagenic urticaria, presumably due to chlorine or some other trace chemical in the water, although distilled water has been known to cause this reaction.
The reaction can usually be controlled with epinephrine, antihistamines, or cortisone-like drugs. Itching can be controlled with cold packs or commercial topical agents that contain menthol, camphor, eucalyptus oil, aloe, antihistamines, or cortisone preparations.
ref:http://www.myonlinewellness.com/topic/physicallergy

[alexa5207]

i think i have the same thing because every time i take a shower/bath i get these red itchy bumps scattered on my body (in no particular place), they itch like crazy but if i dont scratch them they go away within an hr or so...it also happens when it rains. i never knew there was a name for it though. years ago i used to getchronic hives all over and my lips and eyes would swell every single day. when i went to an allergist he said that i wasnt allergic to anything in particular but that i had a condition (dont remember the name) that most young people get for a couple of years and then it just goes away. i had to take benadryl, zyrtec and singulair everyday for about a yr...now that doesnt happen to me everyday, but the thing with the bath/shower does. i dont know if thats related...

[rubez]

I am 20 years old and have been suffering from Aquagenic Urticaria since around the age of 13. I break out in the rash whenever my chest or back come into contact with water from any source, at any temperature. I can take Fexotabs (an antihistamine) around an hour before contact with water to stop the break out, however only do this when in public or need to go out as soon as i've showered.
I read on another forum that a few people got piercings around the time of them developing the disorder. I got several piercings at that time and am interested to hear if anyone else did?
I wish someone would reseach this further and some day find a cure to this horrible debilitating illness.

[musicman123443]

I am 18 years old and first started showing signs of aquagentic uticaria 7 years ago. I break out in hives mostly around my torso every time I come into contact with any kind of water--In the sea, in the shower, even my own sweat.

I was wondering whether anyone else who has this allergy has fair skin. I do, and I was curious as to whether this was a common precedent. Please let me know if this is the case.

[Sacramento_girl]

WOW. i've never heard about this problem . i've heard and seen a person who is allergic  to sunlight. a lilttle girl about 8. so sad.  I hope with the new technology in this world that they will find something to help with your  problems.. i dont think i have any problems like that. i break out  with brown circles when i work out from the sweat but thats all. i dunno what it is but i've had them 4 about 2 years.
What about drinking water ? can you do that? Must fluids are basically water. what do you guys do?>

[thelovelylady]

Wow, sounds like this really is more common than the doctors think it is. I'm pretty certain I have this condition as well. For about 10 years now I've broken out in hives every time I shower. I also have them sometimes when I wake up in the morning, or sometimes after exercising. Mostly they are on my chest, stomach and back, but occasionally spread to my shoulders. They itch and burn like my skin has been burnt with an iron in spots.

I know it's not related to soap, fragrance, lotions etc b/c I've tried about every sensitive skin kind on the market. I went to the dermatologist and she just told me I have hyper reactive skin, and that I should avoid hot showers and take a daily antihistamine. And go to the hospital if I ever feel like I'm going to faint when I get them b/c it could be a severe reaction.

I've tried not taking hot showers and it doesn't help. I've tried the antihistamines and they are helpful, but I can't take them forever. My husband and I are TTC so I had to go off of them and of course the hives are getting worse. It's SO frustrating, I actually dread taking showers anymore. :(

[yankeybeans]

I too have a severe sensitivity to water - even going into anaphylatic shock.

This is my first post so I want to check out the process before writting more. If this post show up properly I will write more.

[yankeybeans]

First post worked, so here is more of my story.

After coming back from first Gulf War I started having severe itching after showers or swimming. It worsened over several years, until one day I went into shock and almost died.

Since then I have seen many doctors, and have found a regime of medications that keep me alive.
I am sensitive to many thinks that touch my skin, like cloths, furniture, paper products and many types of soft rubber or plastic materias. I'm also react when water dries on my skin. I can't go swimming or take a shower. Getting wet is not the problem, its afterward when it dries.

Even with all the meds  I still have to avoid water. Buying clothes is difficult, but I'm o.k. with some all-cotton products without wrinkle guards, stain guards, etc. I have covers to sit on so I don't touch furniture.

I have learned a lot about living with this problem. I use hair dryers a lot on my clothes and skin.

[nowaterplease]

I am a45 yr old man, I have had this alergic (allergic) reaction to water of any form (sweat, shower, swimming) all my life. I gave up on doctors years ago and just try to stay out of water and dry as much as possible. I shower quickly (less then 5 min) 1x a week and just wash with a washcloth daily in areas like armpits and croch. This has kept my suffering at manageable levels for years now. coton clothes are all i can wear to help with the hives and rashes. so you are not alone and doctors only recently have tried to understand this alergy (allergy)/disease that many of us have suffered with for years.

[margypops]

Me too, My broke out recently after Dental work, after several tears with out the hives, it is back with a vengance, I am on a antihistimine Hydroxy ,it seems to have stopped some of the itching but the big wealts from the Hives are still there,I didnt realise water could do this,I know when my body channges temperature its worse. I read these posts with interest and will try anything, PS The effects of the Anti histimies is awful I feel either Hyped and then worn out, darent Drive.

[margypops]

Forgot to say, sitting in front of the PC monitor starts me itching also, I assumed its the heat from it, I try to sit back.

[smileluvr]

I have urticaria and bad. It was discovered about 5 years ago, took a year off, and now will not go away. I pretty much cannot do anything without having to explain why my arm looks like somoene beat the **** out of me. I am on 4 times the amount of anti-histamine (sp). I have to take 2 zyrtec, 2 allegra, and one 1 claritin because I am allergic to benedryl. So, I truly understand everything some of you are going through.

[daisypie]

The more and more I read about this disorder I think I might have it.

Whenever I take a shower, swim in the pool, or sweat a lot, I get ichy spots on my chest, neck, and back.

They are very itchy but if I don't touch or scratch them, they usually go away in about 10 minutes.

I don't know if I should ask my doctor about this, or if there is something I could use without a prescription.

To the people that were diagnosed, do you know if what happens to me is Aquagenic Urticaria, or is my skin just really sensitive?

[pickles227]

Hi, I live in Somerset, UK. Just came back from doctors. I have been diagnosed with Aquagenic Urticaria. Had it for ages, though it was my skin getting older, and so dryer!!

I was told to read up on it on the net, for obvious reasons.
But it has been suggested that a remedy from the pharmacy may help: urtica urens 30c strength - such 1 x twice a day. Its a homeopathic remedy and perfectly safe I read, so I will give this ago, dont want the rest... I have spent hundreds and hundreds of pounds of shower stuff with cream in to keep the skin moist. What a waste of time.
Homeopathic remedies are supposedly good with this condition, but who knows anything about whether they are or not?

[pickles227]

Hi - me again from Somerset.

On reading up about this dreadful state, does anyone out there have Aquagenic Pruritus, which is just the same, but no hives, just big red patches?

I have tried to get some Weleda urtica this morning, and had no luck.
Anyone tried Aqueous cream to bath or shower with? Or even baby lotion all over before washing, or after?

from a fed-up Pickle.
WHY DOESNT SOMEONE KNOW THE ANSWER?

[pickles227]

Pickles, a minute further on

Forgot, I found something listed as good - but couldnt get it, it is GPCumin cream. Cumin is in Tumeric - which I take as a reducer of inflamation (inflammation). Any other ideas? May help someone, but I expect all does not suit all, and its try and try again. How much baking soada in the bath? My doc doesnt know.

still a fed-up pickle

[Tarns]

Hi. My name is Tania and I live in Brisbane, Australia. I am 31 years old and have been suffering from aquagenic urticaria since i was nine. Until today i had no idea there was a name for it and that there were other people with it. People have always looked at me like i was a freak when i tell them i am allergic to water.
I react to all water on my skin and sweat but i also cant use most creams, baby oil, massage oil, make up and deodorants.
The best way i have found to deal with it is to have really Quick showers and i do not ever go swimming.The article I found says that not much is known and even the experts seem vague but they all agree there's an association with elevated blood histamine levels. Now i just have to find out what that means? And if it can be fixed or if i have to live with it forever?


Over It

[gennie656]

I have the exact same symptoms that you do, in addition to extremely dry skin otherwise. I have been taking Borage Oil which you can find at health markets, etc and that has definitely helped in the shower, I have almost completely stopped breaking out after a shower. It doesn't seem to make a difference in the ocean, though. Benadryl or other AH seem to work in saltwater, but definitely make you tired/drowsy.  

[supercoolperson]

I'm not sure whether I have it or not. Strangely, I've lived with something that sounds similar to this for the past 3-4 years (I'm 17 now), and I've only tried to look up an explanation for these rashes tonight! Basically, I get itchy red blotches over my body (started on my chest but has progressed down my back and front) after any contact with water. The blotches are basically one lighter and raised pore surrounded by redness. Looks alot like the image you get when you type in aquagenic urticaria into google images from a distance. I'm not sure if this is the same condition however, because the rash is just slightly itchy, nothing i can't cope with unlike some of the comments already on here... They go after about 10 minutes...
This sounds alot like aquagenic urticaria actually... oh well...
If however someone would like to direct me to a better and closer image of the rash than is on google images so I can be sure, then I would be very thankfull...
From Rebecca... all the way from lovely England..

[supercoolperson]

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?

[thericanchula]

Hi my best friend has me researching this topic because he thinks me may also have  Aquagenic Urticaria. Ever since he was a child everytime water hits his face his cheeks turn bright red and itch alot. the skin on them eventually flakes off and his skin stays bright red for hours. He notices that this occurs with rain tap pool and sea water but not with distilled water. after going to the dermatologist he was told he just has sensitive skin which didnt help him at all .is it possible he has Aquagenic Urticaria?

[suzywoo]

my daughter has been diagnosed woth the condition and we are told its rare. she has had a barrage of blood tests which some had to be kept hot on the way to the lab for testing. She is on high antihistamines. tap,rainwater,bottled water, pool water,sea and river water all bring out a reaction. one eye swells if she cries so she looks like she has been hit, and when her eye watrs her skin under her eye feels like its burning. when she gets wet she has a rash and welts over her body which over the last 2 years has spread from her head downwards, its now further down one leg than the other. we have been told not to go swimming.
looking for more info it seems many people have the condition come on with puberty...... does anyone know if it bogs of with another hormonal change or is this going to continue till it covers everywhere? it seems also that some people progress to having problems with sweat after suffering for awhile with the effects after water. She cant use alot of the skin cleansers and reacts to tea tree now quite badly, her skin burns and becomes sore after using them. generally her skin is very good, not dry, dr said she expected dry areas etc but skin was good. the welts are large though when they pop out and the rash is very itchy and sore.
to all of you that have had it for sometime and not seen a doctor please see one. maybe if they become more aware of how many people are affected they will be able to do more research. we've been told theres only around 30 people with the condition worldwide
suzywoo

[horns1]

Hi there    i'm 34 and also have this condition and another form of urticaria that means i'm alergic (allergic) to just about everything that touches my skin, I was only diagnosed earlier this year (2008) though i have suffered in silence for many years! My biggest objective was being able to continue a normal life which for me includes working out at a gym several times a week and teaching kickboxing, needless to say this means having to shower sometimes 3 or 4 times daily! Prior to the onset of Aquagenic Urticaria i could never have imagined the pain and soreness never mind the look that having this condition could cause although i consider myself lucky as when the itching and pain dies down so does the rash and hives and i have never (yet) been left with these over a prolonged time although i am of course aware this could happen eventually! My coping stratagies include regular antihistimines namely ceterizine once daily and chlorphenamine four times daily at present although this will always be subject to change if resistance occurs and i have to be totally honest in saying these tablets have been an absolute god send for me even though i'm aware lot's of specialists dissagree of there usefulness they'd have a hell of a job denying how they have improved my life and i have an absolute cast iron diagnosis that it is definatly water and not some third party irritant that causes my worst reactions as my other alergies (allergies) present in a totally different reaction and my testing was done by medics who soley specialise in skin alergies (allergies) at a leading clinic (due to my being suseptable to anaphalactic shock)

I actually suppose the worst thing about this condition is people's lack of understanding and there smart comments, like, for example " how is it possible to be alergic (allergic) to water on the skin when our bodies are made up predominatly of water? "  Well it doesn't take a rocket scientist to know that the make up of our internal structure is completly different to the make up of our external skin and our external skin is exposed to far more irritants and general climate than our internal structure therefore making it more suseptable to alergies (allergies) forming!!     And i didn't learn that from some "consultant" as usual plain good old common sense prevailed!!!!! Rant over!!!!!!!!!!!
                                                                                    

[Guest75]

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'.  

[yankeybeans]

I am wondering how many people are allergic to water versus allergic to water drying on the skin.
Do the rest of you in this forum really itch when you get wet, or is it really only when you start to dry off?

My theory is that our skin is really a little like a dry river bed that cracks when the water drys up. And that the micro-mechanical cracking as our skin drys is what causes our mast cells to degranulate causing the itch.

Just wondering if this rings true with the rest of you.

[diane156]

This is the first time I have found out what my skin problem is called.I think Aquagenic Urticaria is more common than the experts think. I have suffered with this for 34 years and after beening told by numerous doctors you cant be allergic to water just got on with it.I think as with any condition there are different degress of severity. I have difficulty when my skin touches any water even my own sweat. However the older I am getting the better I am getting. I can now have a shower for upto 5 mins without any reaction. Swimming is still the main problem because of the lenght of time I am in contact with the water. Thought mine was hormonal but have heard it can be brought on by a traumatic event

[Bubbleboy]

My name is Jay and I've had Aquagenic Urticaria for about 13 years. I'm a 21 year old male living in Ontario Canada. My dermatoligist has attempted to give me several different medications including steriod creams and Apo-Hydroxazine which haven't done anything for me. In my case it's when I touch water whether it be lake water, tap water, or even my own sweat. My brother and I share Aquagenic Urticaria and up until two days ago I didn't know that other people had it (Although I had suspicions). Most of my symptoms are the same:Hives, redness, itchyness but I also get severe pain all around my body when I touch water. Not sure who else gets the pain but I know my brother and I do. It's quite the annoying disease... trying to swim/shower/exercise and after you're done you're in the most intense pain you've ever felt... burning, itchyness and you want to tear your skin off. The only thing I've seen that works is if I turn the heat up really high in the shower... the symptoms still show but I guess the pain from the hot water over-rides the pain from the water itself.

[justsomedude2010]

Bet it was eczema.
I have atopic eczema, and it itches, but noting too bad. ( I have a mild case. )
I also get red rashes all over my torso when I take a shower, I wonder what that is....
It can't be Aquagenic b/c the rashes don't really itch.

:/

[FurballsMom]

I don't have this condition, thankfully.  I have a condition that is just as controversial as Gulf War Syndrome, so I can certainly appreciate where yankeybeans is coming from.  

I wonder how much of this water allergy is related to the same issues that people with chemical sensitivities face because of the modern age we're living in?  I'm certain there are other factors in the environment besides what is in tap water that is contributing to this problem.  Especially, since it seems to be such a modern day allergy problem.  There are so many chemicals in tap water that it seems unreal.  But, that's not the only source of exposure to so many man made chemicals in our environment.  I'm not arguing about the reasons behind this or the intentions, because I get that, so I don't need any comments about how all the chemicals in tap water are made to be safe drinking water, etcetera.  I know about that.  But, I'm sure there is more to this water allergy than what meets the eye.

[LeanneMarie]

Not diagnosed, but I'm pretty sure I'm allergic to water, as well. My face gets so red/blotchy after showers, I get hives down my arms, itchy on my neck and chest. One time after a shower, my legs and feet were itching so bad from the knees down that I wanted to cry. Although I know it always happens when I get out of the shower, I've never thought I was allergic to water, lol. My manager at work actually mentioned it to me when I was talking about my neck being so red one day. She said she had a friend who was allergic to water. So 10 ten minutes ago when I got out of the shower, all red and itchy, I decided to look it up, and sure enough, there are others suffering the same thing!

I've also had pityriasis rosea twice in the past several years, and started wondering if there could be any connection. When I mentioned the water allergy to my dad, he said it could be from the Agent Orange that was sprayed when he was in Vietnam. When I had the pityriasis, I looked up information online to see if there was any link between the two, and I found one such case of a man explaining it to the VA.

Guess I'll just have to mention this to my doctor when I see him again!

[LeanneMarie]

I just read your comment with the question of, could it be that you only start itching when you dry off? I actually start breaking out into hives IN the shower, mostly noticeable on my forearms.

And in addition to the post I just made a few minutes ago, I just got off the phone with my mom, and she said she is the same way. She said it was more noticeable when she was my age (I am 28), but in time, it has subsided a bit. She said that maybe it's just the chlorine, etc that is added to the water when I take a shower, but I had to explain to her that I get the same way when I sweat from working out, or drying my hair (not so bad when I dry my hair now.. just chopped 12 inches in length from my hair, so it doesn't take as long to dry now, which means I'm not getting as overheated from all the time spent drying it! Yay!)

[oldandwise]

I have just read all your comments and I sympathize with all of you.I suffer much the same as you and have been for over 50 years ( I am now over 70 ) I started with an allergy, symptoms of which were swollen eyes,tongue, lips and face and anaphalaxis as well as hives.I saw many doctors and specialists and had scratch tests on my arm (12) but was allergic to all so they did a bigger test of 80 on my back. I was allergic to 60. So I went off all dairy products, red wine etc and quite by chance after 12 years found I was allergic to aspirin. After I stopped all aspirin I improved dramatically except I found I could no longer go swimming, salt water or fresh as I broke out in giant hives and you are right these rashes and hives do itch and make life miserable. I am OK if I bathe in tepid water.Cold water will make me swell up.I find that things I could not eat before I can now,( dairy etc )  but I become allergic to different foods and drugs.My research shows that one drug and one food together or two foods together can cause a reaction, so its not an easy road .I need to keep my skin cool and dry, I dont do any heavy exercise,I dont get stressed, I only eat fresh food ( no packets ) I dont eat nuts, I dont eat junk food and I limit alcohol to half a glass. As i'm allergic to aspirin I also stay away from Anti inflammatory drugs and RUBS and I dont go anywhere without my Epipen.I dont think any two cases are the same so see an Allergist but dont expect a 5 minute fix its very complicated    

[KayKay1989]

I am from Texas and i'm 19 years old and have been diagnosed with Aquagenic Urticaria since i was 10. I have taken many medicines and some work, but moslty they wear off after a while. I do have one question for everyone, is this disease hereditary? My mom and i have asked the doctor many times if this will be passed to my child, but noone is certain. Does anyone have any experience with this? Please help.

[Mindymoo]

Wow! I think i may have finally found out what is going on with my skin and at the same time, realised i am not going mad!!!
I have always had uber sensitive skin and have had eczema since i was a toddler. For a number of years now i have suffered in silence with the unbearable itching after taking a shower, bathing, getting caught out in the rain etc! Id always thought it was related so never took the matter further.
Like most, ive tried changing what i wash with to not using anything at all; i already use copious amounts of emollients for my dry skin and have also tried applying the emollient before i bathe to 'coat' the skin, but, to no avail!
Ive yet to try antihistamines, which may seem stupid of me, but i was concerned that i would become reliant on them and wasnt sure i could take them on a daily basis. I have now researched and will be visiting the chemist in the morning!
The only thing i havent seen anyone else mention, is that i only get the unbearable itching on my legs.....slight tingle everwhere else, but far from the discomfort i get on my legs?!?!?
This may not be what im suffering from at all, but i dont care whatever it is and what its called as long as i find something that will help. So, its a start!
Ill keep you posted xx

[Aquagenic]

I have had this since about 10 years of age and am now a 36 year old female.My hives are prevalent on torso.  I thought I had finally diagnosed my water allergy with aquagenic pruritus, but then I realized a rash or hives are not a symptom for them.  However, the persistent itching after water exposure is so I think that many of their ideas may be of help.  Yahoo has an extensive Group with that name.   Short, medical UVB treatment is high on their treatment recs, which with my pale skin the one time that my rash seemed to go away was when I lived in Bali for 5 weeks and I let my skin get tan.  I'm not quite willing to try it with the cancer risk.  All the information that is out there now has motivated me to at least explore trying to get rid or reduce this condition.  Another high rated, simple treatment they had was making the last minute of your shower very hot, although my water does not get too hot so I've not had success testing that one yet.  One thread I saw also suggested a link to food allergies, it seems so unlikely, but since I seem to have other food sensitivities I am scheduled to see an allergist next week.  I will be sure to post if I have any success.  I highly recommend searching the slightly more common aquagenic pruritus.

[JvEllul]

Hello,

I am the health editor of a magazine called Tell! I am looking for a case study of someone who suffers from a water allergy for a real-life feature. If you are interested in being this case study then please email me your story at ***@**** and cc in ***@****

Thanks

Joanne

[megan80]

My daughter (she'll be 9 in July) must have Aquagenic urticaria. I first noticed this when she was about 2. She would break out in red splotches all over her chest and back after she took a bath. Then, a few years ago, I noticed it was getting worse, however, unlike most of you mention, it is not only on her chest/back. It is also on her neck, shoulders, stomach, and VERY prevelant on her thighs. The spots on her thighs are a lot worse, though. They a very red, raised-up circles...looks almost like really bad ringworm. (if that makes sense) She possibly has cold urticaria also, because she is much much worse after being exposed to cold water. I have even tried letting her bathe at different places thinking that it was our water. (we have well water, my mom has city water, and aunt has county water) Didn't know if it would make a difference...obviously not.

[NikerNak]

I have it too! I live in the USA and in the state of Illinois. everyone thinks im lying lol

[jenimac]

I also get red, itchy splotches on my skin area after showering and swimming.  I'm 29 years old, and would estimate this has been going since I was approximately 12 or 13 years old.  The rashes are almost exclusively on my midriff/stomach area and sometimes will appear on my neck.  I DO NOT scratch, although it takes a lot of will power.  If I do not scratch, they disappear in 15-30 minutes.  I always thought I was allergic to chlorine because in a pool the rashes are more severe.  I have fair skin and it is generally sensitive to harsh soaps and detergents.  

I do not use any topical creams or oral medications.  I do use a WATER FILTER and it greatly helps, although it is not perfect.  However, when I go to the swimming pool I do use a topical cream, like Cortisone.  

I've never been to the doctor, and unless I get health care, I never will.  I feel like I have a good grasp on the condition/problem and my best bit of advice for everyone is to get a water filter.  I'm not sure if it would work for everyone, but it couldn't hurt.  Besides, it's probably better to keep all those chemicals off your skin, with or without Aquagenic urticaria.

Good luck to everyone.

[Micro666]

I'm a 36 year old male from the UK, and I've had Aquagenic Urticaria since I was 13 years old.

My mother had the same condition, which came on at puberty, but luckily for my mother, stopped when she reached the menopause. When I was growing up, my mother always had to take anti-histamines before going swimming to try and stop the hives. She didn't bother for baths.

Sometime when I was 13, I suddenly developed the same condition as my mother, but neither of us knew what it was called. I've never been to a doctor with the condition, as it doesn't really cause any problems, other than annoying hives all over my torso, which are incredibly itchy, and can last anywhere between 15 mins to an hour.

It doesn't matter what temperature the water is, or how long I am exposed to it for, for the hives to occur. The thing I find strange is that it only affects my torso, and never my legs, face, or lower arms.

I was only 2 or 3 years ago when i researched "water allergy" on the internet that I came to know what the condition was called.

Everything I read about Aquagenic Urticaria that described the symptons, exactly matched what I have experienced for the last 23 years...

I know there is no cure, but I live in hope, as my mother no longer suffers from this condition, and she put up with it for about 40 years.

[Welshlady82]

This is amazing!  I have lived with this problem my WHOLE life!  I thought I was weird, and was treated that way, for being allergic to water, of all things.  I break out on my face, neck, back and chest the minute I start to sweat, or swim, take a shower or even if it rains!  There is nothing worse than going out into public with big bug bite looking things on your face.  I always tried to ignore the itching but that is so hard, I found stabbing them with my nail took the itch away lol.  I have had this for as long as I remember, probably 20 plus years and never thought twice about it.  Today I was bored and just googled hives from water and came across this Aquagenic Urticaria.  It feels so good to know others out there that have this problem and I am not a freak!  Unfortunately I have never found anything to fix it... temp cures sure, by putting cold compress on the hives but that is all.  Anyway, I just wanted to thank everyone out there for sharing your stories, it has made me feel so much better... even though I feel itchy all over now :op

[KARLOS21]

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!

[Broad86]

Hi, I have recently found out that I too suffer from  Water urticaria, or aquagenic urticaria,I have this for about 2 years and always said I felt I was allergic to water and like other peoples stories they all used to laugh. From other stories ive read, it seems a rare condition or just a condition that hasnt been exposed!! I currently take antihistmines which do the trick You have to make sure they have the ingredient 'LORATADINE' in them......from years of suffering and never knowing im so glad to have found out what it is I suffer with. I also have a food intolerance so not sure if this is related. Does anyone else have allergies to food and also suffer from aquagenic urticaria???

[sinomen59]

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.

[abcde180]

I'm 34 and I've had Aguagenic pruritus since I was a child and was most recently diagnosed with aguagenic Urtcaria too. Most of the doctors I saw during my childhood thought my "allergy" was all in my head because there were no visible symptoms other then the welts from my scratching. They thought I was making myself sick because I believed in my "supposed allergy" so much. After years of suffering alone and in silence, a doctor finally gave my allergy a name when I was 16, aguagenic pruritus and recommend treatments including applying baby-oil after shower. Along the way, they've recommnended various lotions and treatments but those lose their effect couple months into it and some just don't work at all. So through trial and error, I learnt to deal with the AgP(Aguagenic Pruritus) my way. 5 years ago, I was diagnosed with Aguagenic Urticaria when after sweat and water exposure I not only feel the pain and itchiness as usual but i also get hives all over my torso, face, limps, and scalp,  and the inside of my nose starts iching and my eyelids swell up. I've learnt not to expose my skin to cold temperature right after workout, hot shower/bath and after I swim. I still break out from my sweat and water but cold temperature aggrevates and makes the hives and itch worse. If I'm already sweating I avoid cold areas. I take lukewarm showers after a workout or swims and adjust the water temp slowly toward cool. I try to avoid the rain when possible but since I live on kauai, the rainiest island in Hawaii, it is unavoidable. the beach is a weekend ritual for me and my kids but i break out after a swim so I have gallons of distilled water in my car at all times. It is the only water my body will not have a violent hive reaction to eventhough the burning and itching still presist. If I take hot showers, I make sure to avoid stepping out of the bathroom till my skin is completely dry and my hair is either completely wrapped in a towel or dried. I also apply baby oil right after a shower. My clothes are washed using Draft and I avoid fabric softner and dryer sheets. Soap is still a battle of the will, I find a soap I like and will myself to deal with the consiquences. lol, not practical but i've never been very practical. So there, my life with both Aquagenic Pruritus and Urticaria. Fun stuff!!

And if all that wasn't fun, Kauai's weather is humid all year round.

[batty_loz]

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!

[batty_loz]

p.s. I get laughed at when i tell people but I'm a very confident person and like being the centre of attention so shake it off but what I wanted to say is that when I explain it to people and they say, "even rain water?" and I say yes if it soaks through my clothes to my skin and my sweat triggers it too, I often say that I'm not 100% sure whether it's the water or the residue of chemicals on my skin from washing detergent that causes the reaction. It comes on almost as soon as my skin gets damp but the itching is similar to a flea bite so I can ignore it. What does everyone else think about the residual chemical theory?

[shizzell]

Iam 31 years old and have been breaking out in hives from water since I was 12 years old. Doctors could not beleive me when I told them. One doctor even said "I dont want to tortue you by sprinking water on you!" and laughed like it was a joke. I did come across one nice doctor that wrote me a prescription on Calirton and told me to take it once daily before bed and that seemed to help. I just did not want to be dependant on a drug for the rest of my life to relive the embarrassing red marks and itching. I break out anytime water comes in contact with me, including baths, showers, rain, and sweat. The hives appear on my face, neck, back, chest and stomache. For years I wandered what this was or if there was a cure. I found a little relief today knowing what this is actually is and feeling a better knowing that I am not the only one. But feel sorry for the rest of you that have to deal with this like me on a daily basis. One doctor told me that I might just grow out of it. Wishfull thinking, 19 years later and I still have it. Good luck to you all in finding some relief. I use Benedryl when I go to the pool and lots of concealer and cover up after showers!

[Kiki156]

Hello!
I am 19 years old, a college student in VA, and i have aquagenic uticaria too :) When i went to the doctor when i was about 13 or so, they could no figure out what was wrong with me and basically told me i had to deal with it. They gave my creams and such for my outbreaks but i also have chicken skin so the creams just caused more pain. I tried Claritin as well, but as it turns out im allergic to that too (ironic huh?) So, ive taken the doctors advice and just unfortunatly delt with it. Peoples reactions when they find out are quite unsetteling because they think its wierd or they just dont believe you. But, needless to say its nice to see im not alone with this. Im not sure what your #1 question is when they find out, but mine is allllllways "how do you shower?"...i tend to joke with them and say i bathe in dirt like a chinchilla before telling them i do it the exact same way they do; i just break out in hives when i do. The hives itch like hell (neck, face, back, chest, shoulders) but usually go away in about a 1/2 hour to 45 mins.
Keep staying strong you guys and thank you for sharing your stories!! :D

[Peanut8]

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

[NoAge1234]

I have aquagenic uticaria too.  It started when I was about 14 and I am 22 now.  My Mom also had aquagenic uticaria, but claimed that it just went away when she was in her late 20's or early 30's.  I was just reading a post on oddee.com about 10 people with Unbelievable Medical Conditions and one of them was about a girl from Melborne that could not take a shower without breaking out in rash.  I found it somewhat funny because as far a I can tell, this really is not that rare... just not that well documented.  I have never tried to take anything for it, I more just tolerate it.

[tgentilozzi]

I'm beginning to wonder if my 4 year old son has this. I've been struggling to find out why he has been breaking out in hives for the past 6 weeks -- it usually happens nearly every evening at bathtime, when he gets into the tub, and lasts for a while afteward. I have been giving him Zyrtec that's made especially for hives. The hives disappear overnight while he sleeps. He doesn't get them during the day while at preschool. At first I thought maybe he had a virus and that's what was causing the hives, but it has been 6 weeks or more now, and they still continue to pop up nearly every night. The hives are on his torso and thighs, and sometimes on his arms -- never on his face. The hives on his thighs are often very large (almost looks like ringworm) and he even gets huge ones on his buttocks. He says they itch a little bit, but he doesn't complain much. I have not changed laundry detergent, soap, or anything of that nature (he has always had "sensitive" skin anyway and has had respiratory issues in the past) and he isn't allergic to any foods (I've been paying close attention to what he eats). He actually underwent allergy testing when he was almost 3 because of his respiratory issues and because he used to itch his face and eyes all the time and get hives/welts, and I was told he has no allergies (which I don't believe). Also, we were at the beach in August and, when he got into the salt water, he got little red spots on him. He complained that the water "stung." However, he swam in the chlorinated pool without any problem. So I'm not sure what to make of this. Any ideas/comments? I don't know whether to call the pediatrician or not. What's the point, if not much can be done other than what I'm already doing (giving him Zyrtec).

[duth]

I am a 48 yrs old woman and I started experience this only since last summer. First I thought it was because of a wild plant sap as I started to clean a wild area. So I used Cortisone cream or an antihistamine to resolve it and it worked well. Then today i went outside and it's been getting cold only few days in this area, I suddenly started getting hives on my knees which reminded me last summer one day when i went to the pool i got similar kind of rash and I thought it was b'se of a caterpillar and I took an antihistamine and a cortisone and it went away quickly. So when I got this again I wanted check on the internet and I found this forum. Looks like it is very common than I thought. I never had this before and my mother said that she had i when she was young too.

[magwriter]

Hello all

I am a magazine writer in the UK researching Aquagenic Urticaria for a health article. I am interested in speaking with people who live with this condition and finding out how it affects their lives and what strategies they have to deal with it.

If you are interested in perhaps sharing your experiences for a health article then please message me back. I will be happy to provide you with my credentials and examples of my published work and answer any questions you might have. My personal email address is adam.c.***@****. The magazines i work for will also pay well for your stories and pictures.

I hope to hear from you.

Kindest Regards

Adam Shaw
Feature Writer
NUJ Press Number: 942778

[matiekarshall]

hi, im a 22 year old queensland girl. i too have suffered from this condition as long as i can remember. i used to get my mum to write notes so i didnt have to go to school swimming lessons when i was at school. i find it is worse from sea water and pool water than rain or shower water. its not so much painful, just extremely itchy, discomforting and drives me crazy.

for years doctors told me they didnt know what it was and i would just have to deal with it. today i saw the doc and was told it was cholinergic urticaria and i should take antihistamines. after doing some research i have now realised it is aquagenic urticaria and have read that antihistamines dont help.

i too however have suspicions about whether it is caused by being submerged in water or from air drying afterwards. i do get the rash while in the shower (not being submerged in water when showering) but when i swim at the beach or in a pool it seems to only affect my neck, chest and upper back while in the water (which is exposed to air while wet) , then spreads to my stomach and rest of my back when i get out (which was submerged the entire time). i have also found the qicker i shower and dry myself, the lesser the reaction. am wondering if you have experimented much with the factors too and what you may have found?

[dpthots]

How many of you have taken antibiotics for something, especially in the last couple years? Any treatment of Antibiotics prior to this problem? Anyone noted AB's making it worse? Or any other things prescribed? Anyone considered a Systemic Fungal infection? I noted one individual that had no trouble in chlorinated water, perhaps the high chlorine was a factor in that case.

I don't have your condition, but found out something a little weird about systemic fungal infections, that they are getting diagnosed and treated as Bacterial Infections, Allergies, etc., and the treatment is making it worse, because in a lot of cases, the treatment is part of the cause.  

(I do have a cousin who had some kind of problem similar to all of yours, and it was caused by fungal problems aggravated by Antibiotic use)

From what I have read, overuse of ABiotics are causing what's called "overgrowth" of fungus in our systems. Diagnosis is difficult, because we all normally have them. I could just be way out there, your problems could be caused by something else, but it sounds like it would be worth considering my alternative, your condition does not sound fun at all.

Try a search on Fungal Infections and natural remedies????