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Avatar universal

I have Aquagenic Urticaria does any one else?!

I've had aquagenic urticaria for 2 yrs now and where I live the doctor told me I am the only one that has this in the city.

I was told to do my research on this disease online because my doctor did not have much information about it because its occurance is so rare.

All the medication that was prescribed didnt work. Even using boxes of baking soda  in the bathtub doesnt work and thats what my dermatologist told me would get rid of the hives in the first place.

I'm sick of just dealing with the growing amount of itchy hives. My doctor told me with aquagenic the hives stay on the torso and rarely go anywhere else. After 2 yrs they have spread and go anywhere depending on the amount of time I'm showering/working out/ or even just standing in the sun or wearing my winter coat, and lately i just always have them.


I've dealt with this all alone long enough and I was wondering if there was anyone else who has it? Are there any other tricks of the trade to deal with this awful disease!!??

thanks alot!! <3 lauren
163 Responses
Avatar universal
I am so sorry. I completely understand what you are going through, or atleast in a sense. I have had hives for 4 months now and nothing is making them go away or even get better. its so frustrating because this is the most crucial time in my life as I am a single mom trying to make a life for my 1 year old and I. I am just graduating college and interviewing for all these big jobs and its humiliating waking up with hives. I dont know whats causing them. ofcourse the doctor says stress. I have tried a lot of things but nothing has worked.. has your doctor prescribed anything?
Avatar universal
Have you tried Calendula, or Marigold Flower and Chickweed. You can make a paste from the stems & flower tops. Also you can try Burdock root, and dandelion root made into a tincture. Just boil, cool, and drink.
Avatar universal
I have aquagenic urticaria too!
I live in the Netherlands and I was told that there are only a few people with aquenic urticaria in the world.
I take anti-histamine (128mg) every day, and it prevents most of it. I would really like to have other medication since this one makes me tired and I have problems concentrating.

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

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

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



526508 tn?1221789272
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...
Avatar universal
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.
Avatar universal
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.
539106 tn?1213776786
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?>
Avatar universal
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. :(
Avatar universal
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.
Avatar universal
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.
Avatar universal
I am a45 yr old man, I have had this alergic 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/disease that many of us have suffered with for years.
535822 tn?1443980380
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.
535822 tn?1443980380
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.
552853 tn?1278409503
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.
Avatar universal
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?
Avatar universal
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?
Avatar universal
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?
Avatar universal
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. 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
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