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

[JasonBeau]

I have always had an allergic reaction to water, whether its from showering, swimming pools, lakes, ocean water, rain or sweat. I get red splotchy itches mostly on my stomach, chest, and neck. but it is not sever and usually goes away fairly quickly once i dry off. I am 31 years old and have been this way as long as I can remember. I have never really researched this or the cause. I just tell people I'm allergic to water. I guess that my situation is not as severe as others I have recently read about, but maybe its a milder form of the disease?

[KymChurch]

AT LAST!!! I developed 'eczema' and asthma when I was around 11 years old with the onset of puberty. I have always thought there was more to my so called eczema than what the doctors said. I have gone through years of varying symptoms and have just learnt to live with it. As above, showers, swimming and worst of all exercise brings on symptoms. I also believe I am allergic to dust and mould. While pregnant with my second child the above all went into overdrive and I did not sleep for many months as just lying in bed formed so much heat that the itch would keep me awake and tossing and turning all night. Although there is no cure it is so nice to possibly know that I have a disease with an actual name and not just thrown into the category of eczema.

[Anon12_34]

I take fexofenadine hydrochloride (180mg) and it reduces the big hives to small dots that are much less noticeable (good for when out in public to spare embarrassment).

I have had this condition for 4 years, and I believe it was triggered by the contraceptive pill (which I continue to take; I'd rather have hives than a baby).

It doesn't have to ruin your life if you don't let it, I live normally and just take it as it comes (although I unseratand many endure much harsher symptoms than I). Keep your head up.

To the student who posted above me, I would be happy to answer any questions you may have, let me know how I can contact you.

And to anyone recently diagnosed, welcome to the family.

[Rosebud995]

Good morning everyone. I am a student currently enrolled in a rare diseases course and wondered if anyone here would be willing to talk to me about your personal experience with Aquagenic Urticaria: how you were diagnosed, your symptoms, and how you felt after receiving the diagnosis. I recently gave a presentation on this disease, but I was curious to hear from those who have it since I know AU can vary from person to person. Thanks ahead of time and have a great day.

[zonk113]

I forgot to mention that with solution (1) (which is the safest solution because you don't have to know anything much to try it), you need a very pure omega-3.  Pharmaceutical grade.  Because otherwise there will be algae fats in the omega-3 and they will irritate your stomach at that high dose.  This is all spelled out in the book by Barry Sears (who also is the author of the Zone Diet books, also based on biochemistry).

[zonk113]

I do not have this, but I have other allergies (including hives, but they never last more than an hour and I have no idea what brings them on as they are rare).  However I have 2 ideas for y'all.

(1) (You can read about this in the OmegaRX Zone, by Dr. Baryy Sears, PhD Lipid science).  Inflammatory cytokines are made in the process of metabolizing non-omega-3 fats (maybe omega-6, not sure).  The enzymes used to metabolise these fats are the same ones that metabolise omega-3 fats.  If you take a high dose of omega-3 (7-9g/day) it uses up the enzymes so you cannot make inflammatory cytokines.  (So obviously this won't help you if they are already made, but will prevent more being made - so like other allergy drugs like Flonase, start it the day before you need it).  It uncrabs my head and I have the worst hayfever my allergist has ever seen.  Also, I have seen studies showing high dose omega-3 can actually cure (not just treat) psoriasis.  So I think this strategy might be particularly useful with skin allrgies.

(2) Someone said their problem arose after a trip to the dentist.  Dentists used to give laughing gas, which destroys vitamin B12.  I belonged to a forum of people with methylation problems, and they found that some of their allergies improved when they improved their methylation.  Well, I also improved my methylation and the only thing that improved was allergy to bug bites (a skin allergy).  So maybe it would help your skin allergy.  You improve methylation by taking active B vitamins and TMG (betaine).  As an example, an active B supplement is made by Thorne, I think Pure Encapsulations also makes one (not sure, I use Thorne).  These include methylcobalamine and adenosylcobalamine (active B12s), methylfolate (active folate), and P5P (active B6).  I purchase the TMG separately from Soloray in 1g dose.  Others on the forum found that increasing methylation increases the need for potassium, 500mg or more (we take as powder in a drink).  You cannot do this if you have any sort of kidney problem as then you cannot excrete potassium.  I am not a doctor.  But electrolyte problems are serious.  What happens is that many people have a malfunctioning methyl cycle (that's a biochemical cycle) due to either genetics or poor diet (junk food, overprocessed food).  The methyl cycle enzymes use B vitamins and betaine as cofactors.  Some people genetically have enzymes that cannot hang on to these cofactors, others are just not getting the vitamin cofactors in their diet.  The methyl cycle makes methyl groups (carried by SAMe, the universal methyl donor, throughout the body) and methyls are used to turn on/off chemical reactions.  So w/o enough methyls many reactions that should be ON are left OFF.  When you allow them to be turned ON, you open up additional biochemical pathways which also need different vitamin cofactors (that's why they are called VITAMINS, they are required for life!).  So you really should take a good multi vitamin.  But the most serious need will be for more potassium...at least that is what we have found.  But we take many, many other supplements as well as once your biochemical pathways are working ALL vitamins are needed!  You are on your own if you try this.  I suggest researching the methyl biochemical cycle.  Here are a few sites that might help to get you started: http://www.enzymestuff.com/methylation.htm
http://www.heartfixer.com/AMRI-Nutrigenomics.htm