AQAUGENIC URTICARIA!!

[miacarlawilliams1994]

Hellooo people i have aquagenic urticaria which is a water allergy and i'm just wondering if there is anyone else that has this allergy as i need to speak with someone just because i'm sick of people saying they know how i feel when in fact they havee no idea what so ever.

[gloves-r-us]

I had urticarial that was aggravated by having a shower...it was very uncomfortable. I was using diprobase cream to shower in and this also started to make it more uncomfortable. I have now got more relief by doing two things:

1) Started to use Aquamax Wash which has no SLS (basically salt) in the ingredients.

2) We had a water softener that was using block salt to soften the water and so we stopped adding the salt and my skin was much better.

Hope this helps?

[Shell567]

Hi miacarlawilliams1994,

There is a Facebook group called 'Aquagenic Urticaria - Water Allergy'. It currently has 132 members.

Request to join the group @ facebook.com/groups/3829517...

[miacarlawilliams1994]

Thankkku guyyy but i don't really want it on my facebook as even some doctors are calling me a 'liar' as they don't think its possible i get alot of rubbish from telling people.. one question did you have UVL treatment as i have an appointment on the 10 too see if i can get it but they say its only every worked on one person.. and it's not just showering it's wet washing, rain, my own tears.. i'm kinda scared if im honest i don't know if i'll be able too cope with this.. it's really getting too me atm I don't feel like people will stare as I don't care what people think in that respect but i feel like im trapped in my house.. ALSO has your mouth ever become swollen from drinking water as mine dose quitee alot and my tablets are starting not too stop it.. sorry about all the question i've just never spoke with someone that's had it beforeee Thankkyou soo much for all you help it means soooo much

[Shell567]

Hi miacarlawilliams1994,

The Facebook group is a closed group, which means that those outside of the group won't be able to read your posts. You can also use your FB privacy settings to make sure that others can't see which groups you've joined.

Unfortunately, I can't answer your question about a swollen mouth as I don't have aquagenic urticaria. I have the rare inflammatory skin condition Sweet's syndrome. Perhaps gloves-r-us can answer your query.

Click on the following link for some information on treatment options: md-health.com/Aquagenic-Urt...

Miacarlawilliams, I really hope you're able to find a treatment that works for you.

All the best,

Shell. x

[miacarlawilliams1994]

Thank you so much for that i think i might have a look at the group x

[Alex97]

I have cold urticaria. So similar. I react to anything that is cold, so that includes cold water, which could be rain, the sea, cold water from the tap etc and if it's too cold my mouth and tongue will swell. I also react to cold wind, walking through freezer aisles in supermarket or touching something that is cold. I had this for about a year now, obviously summer months are easier, although I did have a nasty reaction going into the sea on holidays a couple of weeks ago, my own fault as temperatures were in the late 30 s and I thought I would be OK! . Luckily I am seeing an excellent dermatologist and I have been prescribed an epi pen because of the concern of tongue swelling. Hope you get some relief soon.

[LadyPenelope]

UNBELIEVABLE!!!! I found another person with this insane allergic reaction. It’s been 7 years of progressive madness. It started with my arms; I would be up all night scratching 😞😣😖. Then in the second half of 2018, it suddenly happened. I was sitting and having a shower when I felt rather itchy and as I scratched I realised there was a rough patch on my chest. I got up and looked in the mirror. (I’m not a white Caucasian, just a light skinned and mixed mongrel with roots in Brazil, UK & Africa) My chest was bright red/pink with 100000s of tiny fluid filled dots. As I scratched, the tiny bubbles burst but did nothing to help.

Now if my skin comes into contact with water; if I get under the shower within a minute my whole body starts to itch and burn. I itch so intensely that at a point I lose it and start screaming and screaming and shouting. I pass out unconscious and start having a seizure. Just talking about it makes my skin crawl. Sadly I’m one of the those who don’t have weals, red streaks and very visible in symptoms. The last time it happened was last week. The paramedics asked me if I had any psychiatric illness. They said I wasn’t red, didn’t have any weals or red splotches to show that I had any allergy. I had to ask them to leave. I sat and cried and cried. The only thing that has helped me so far is Chlorphenamine Maleate — (Piriton) or Promethazine (Phenergan) INJECTION. It takes about 30 minutes to calm down the itching. A lovely and helpful Senior GP gives me a box of 5 every month. I thought my life couldn’t get any worse; it has. PLEASE LET ME KNOW IF ANYTHING HAS WORKED FOR YOU. I’M SLOWLY LOSING MY MIND AND THE WILL TO LIVE. THANK YOU 😫😩🥺😢😭

[Nicole90]

Omg!! I’m so happy to hear that other people are also suffering with this!! It drives me crazy!! Have tried so many things and absolutely nothing works! It keeps me up at night, nothing stops the itching!! I’m really interested to see if anything works for anyone?