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

[14_t_e_c]

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?

[PinyanB1]

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!

[Xandrius]

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.

[studiostriver]

Can you please tell us what was the medicine you used to cure youself.

[irisabadjian]

Please tell us the name of the medicine the homeopath prescribed to you.

[Edskins5]

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

[lookingforanswers567]

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?

[Daanish74]

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.

[Experienced_It]

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.

[drule]

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

[carllarrabee]

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.

[carllarrabee]

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.

[Hailey77]

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,.

[JME_B]

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.

[catoorloo]

I do have the same condition with water, sweat, sea and few more, and also I have fair skin...

[Alex71112]

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?

[CzarinaOz]

Update (4 years later) No changes.

[CzarinaOz]

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.

[bechetinms]

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!

[TanishaMOA]

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?

[MeshaB]

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!!!

[Nabbelabbe]

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.

[deliveryman79]

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

[ShadowGurl]

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 :(

[bedfordjen]

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!

[fairdinkumangel]

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 :(