Aquagenic urticaria: What gives you relief?

Hi @aalmaraz, a warm welcome to Mayo Clinic Connect. I am so sorry about your diagnosis of aquagenic urticaria. I want to invite @kimass1 and @brendabirkman to the conversation.
I thought you might be interested in this article about your diagnoses. Aquagenic urticaria: https://rarediseases.info.nih.gov/diseases/10901/aquagenic-urticaria
Have you considered phototherapy, @aalmaraz?

I don't have experience with aquagenic urticaria, however I have suffered with Grover's disease and chronic hives for two years. Dermatologists typically do not know how best to treat these rare skin disorders. They typically throw steroids at you. They only mask the problem and the side effects can be brutal. Relief with oral steroids is only temporary. If you can get to the cause, that would be best. If no known cause then you'll have to research and find the best treatment. If I were you I would set out to be your own best advocate and google the hell out of your condition and look for support groups on facebook or other formats. You may find something that works. For me I found a "cure" for my grover's disease at a website called earthclinic.com. There were unconventional/natural therapies that I tried. I found that consuming large quantities of cilantro daily got rid of it. For you you may have to use the trial and error method like I did. I hope you find relief. There is nothing more uncomfortable and irritating than chronic and/or painful itching. I'm here for support if you need me.

I've tried almost everything including Dupixent. Only Beta alanine seems to work. I take the pill form and get it online. I'll take one in the morning and then one again about 20 minutes prior to taking a shower, after which I usually take a shot of whiskey and that gets me through it. I've noticed that Pressure seems to be the trigger. I can get out of a pool and drip dry for 10 minutes and be fine, but if i towel off - its straight to itch city. Same with being in the pool, during a masters practice, I have to make sure no one brushes my legs, otherwise the itching will be horrible enough for me to have to stop practice. I dont have to be in the water for pressure to make me itch, sex will make me itch where ever my wife touches my legs (esp the legs).
Dupixent, I think i stopped the course before it had worked and am trying to get ahold of the mfg to see when it is possible to restart the course. Apparently Dupixent doesn't work until until one day it does. I had 5 doses but heard after the fact that sometimes it takes more than that. This isnt a recommendation for Dupixent, just that it didnt work for me in the first 5 doses but that I'm going to try it again.
So far the only thing that truly works is Beta-Alanine followed by a shot of Whiskey. Whiskey seems to work better than gin, but I am irish.

One last thing, for you and what ever researcher eventually happens upon this thread. A hefty percentage of the itching occurs on or around the Actinic keratosis spots on my body. Not limited to those areas at all but those areas almost always will itch when it gets bad. My face and feet are the only parts of the body that wont itch. Best of luck dealing with this.

I beleive I have the exact same condition however have not been properly diagnosed yet. I have suffered for 5 or 6 years now and was treated for eczema. None of the topicals worked. I have seen allergy specialists and have tried every antihistamine out there. None helped. Then I seen a dermatologist who diagnosed it as atopic dermatitis( eczema) and put me on methotrexate. This worked and I have stayed on it for a year almost all symptoms completely gone. However my last check up he wanted to switch me to dupixent. So we did that and I am about 6 weeks in and my hives and rash is back full on.
The thing is I only really break out when I am in water, cold, hot, at any place in any water. It comes on within about 15 min of exposure and I break out in full hives, legs, arms, chest, back. They stay for about 2 hours then the rash disappears but skin stills burns and is tingling. Like being washed in gas. Then the places where spots were turn to dry flaky spots.
From everything I'm reading it sounds like aquagenic urticaria. I am hoping the dupixent will work eventually but so far no luck. The methotrexate worked but it is chemo and I'd rather not take it forever if there were other options.

I’m lucky, I don’t get the hives…but water contact causes intense itch…Beta Alanine works wonders…I take 1500 mg 30 minutes before showering…for some odd reason, it works great in the late afternoon/evening…mornings, not so much…I buy the NOW brand on Amazon.

I’ve tried antihistamines, different ones and standard to 4 times standard doses, per my allergist, with no impact on symptoms…

Thanks so much for the info. I have been reading about beta alinine. I will pick some up today. Do you only take it before water contact then, or daily? And is it OK to take every day?

I don’t take it unless I’m itchy or know I’ll be showering…it lasts about fours hours…

I also itch with change in air temperature, especially during seasonal weather changes…I take 750 mg when I anticipate an itch coming on…

BA can cause tingling of the skin if you take too much, so start slow…I find the dose that is recommended when using BA as a pre workout supplement is too high and causes tingling (which only lasts about 30 mins…).
I hope it works for you…

After 6 years of suffering with hives and several doctors and prescriptions, currently on dupixent which is not helped as of yet, 8 weeks in, I have tried beta alanine. The one I bought never came with a scoop Soni guesstimated. That turned out to be a bad move. I definitely got the tingling, it was very annoying and uncomfortable, thank God it lasted only a hour or so. But.... omg for the first time in years I went in water and did not experience hives. I swam for 30 minutes and the sat in a hot tub. Normally I would be fully broke out. I only had a couple very faint spots on my legs. I am so grateful. I wish my dermatologist would have been able to diagnose this more carefully. I will contact him again to discuss. I will try this again today but at a more closely monitored dose. Definitely dont want that tingling effect again.

Wonderful news…u may want to dig deep into the BA bottle to find the scoop…I buy the 750 mg capsules. So much easier to deal with! I’m happy for you…BA changes my life…

One thing I noticed…some doctors are not interested in over the counter medication…maybe they don’t believe it has been tested like prescription drugs are…think of how many of us suffer because Dermatologists and Allergists refuse to accept something simple as Beta Alanine…

Did you get a biopsy to see if it’s Grover’s disease?