I have Aquagenic Urticaria :'(

[lilamboo]

I got diagnosed on Friday 08/12/11 by a speacialist. I researched my symptoms on my own the morning before my Doctor's appt and it came up the the same diagnosis. When he said that I have Aquagenic Urticaria I couldn't believe that he confirmed my research. It is so frightening to live your life afraid of bathing, swimming, and washing your hands and being in constant pain no matter what. I knew I had sensitivities to irritants and infections (mainly bug bites, tinea versicolor, vitamin B 12 deficiency, peritonsillar abscesses that caused me to have my tonsils taken out, just developed seasonal allergies 2 years ago)...and now this.  Great and we live in the hottest place in the world (The Devil's Buttcrack) and how am I supposed to cope?I always thought I was just itchy from taking long hot showers and my skin and hair are always to dry and brittle. So I moisturize, and take Benadryl and Zytrec and the pain and the hives still appear. I mean come on! I have to bathe and I can't go days here without swimming to cool off when it's over 100 degrees outside. Has anyone else just had the hives on their arms, face and legs? It is unbearable and I am embarrassed to constanly scratch myself at home, work and out in public. The itch is insatiable and I am left with bigger welts and scars. I take meds for it and they don't help.

[Topcat555]

Hi, I am a 47yr old female and have had aquagentic urticaria since I was 19 although it wasn't diagnosied until I was in my late 30's. It is horrific and until you have it I don't think anyone would understand the pain you have from the itch. I only have it on my arms and legs but when I am under stress it can spread to my stomach as well. I have taken to my legs with forks as the itch is so stressful and painful. I have tried many many prescription antihistamines and nothing has worked. I researched it myself and asked my doc to give me cortisone shots. This has helped immensely. As does ice packing my arms and legs after a shower. I have to have the shots every 6mths but it has been a life safer. Hope this helps someone else..

[Kammiee]

Hi im 14 and I also have aquagenic uticaria. I got diagnosed about 6 months ago but have had it for a year . I just recently found something for me that allows me to do just about anything now including swimming. It is called "xyzal". It takes 2 weeks to start working but I have used it for a month now and I went swimming for 2 hours and got no rash or anything. I was on the swim team and had to quit due to the uticaria but this upcoming season I can start back up again. They had originally prescribed me atarax but that only worked for about 20 minutes. Just enough to take a shower. I really Hope the medicine I found helps you guys!

[Angeleyes4you]

My 17 yr old daughter and I just got back from the specialist and she was diagnosed with this.  She too says it's EXTREMELY painful.  She is CONSTANTLY scratching NONstop until it bleeds.  I can't even imagine the pain you all go through.  Immediately upon her being diagnosed he told us it is so rare that we have to go on the web and research it because there's no information on it.  We left there with 2 prescriptions in hand and are PRAYING that these help her with the symptoms.  Although, it was made CLEAR there is NO cure nor exact cause of Aquagenic Urticaria.  :( :(

[aingealblue]

I too am the same, i would not reccomend you change your diet, as from the current study (although there isnt much), aquagenic urticaria is from a hypersensitive reaction of your histamines to water. although it is not clear there is no evidence to prove its relation to food. please dont change your diet unless your specialist tells you.
lilamboo: i am assuming you are not from australia (just by the way you wrote the date) so i dont know how relevant this information is, but talk to your specalist or doctor about phenergan, they may note that it is a very old school drug, but it has been found effective here in aus.
Maya_33: i am glad i am not the only one who cant cry or sweat. it hasnt stopped my physical activity, but, although i feel sorry that you cant sweat or cry, im glad there is someone out there similar :) i hope they find a preventiive for us :)

[Paderla Anitha, DNB]

Hello and hope you are doing well.

Understand your predicament. You seem to be in a difficult situation, if water is causing the rash. To prevent the allergic reaction, the allergen needs to be avoided. Environmental triggers or seasonal or diurnal variations triggers may be difficult to avoid. More so, if it is something like water. But you could see if temperature variations in water are triggering the attacks, also see if you can change the water source and see if the reactions persist. Sometimes the pipes may contain the allergen.  Alternatively an allergy specialist may try to identify the offending allergen and try to desensitize you.

Hope this helped and do keep us posted.

[Maya_33]

Hi, I have the same has you since last year and tried all those diet without gluten and no dairy products it didnt work for me, and I can't sweat, cry, go in the rain or snow, its very hard to live with it, but now Im on a treatment and its working right now but the doc wants to stop and Im on all kind of meds with that :(  And its very rare and unknow to many doctors, on 30 cases are reported in the world....

[Caryopteris]

Stop eating sugar and cut back on refined flour.  Eat more leafy green vegetables.  This will reduce inflammation.  Stop dairy and see if that helps.  If it doesn't, also stop soy.  Get tested for Celiac disease, which would be an allergy to gluten.  I think our health is all about our diet.