aquagenic urticaria

Posted by aalmaraz @aalmaraz, Nov 19, 2020

i got diagnosed with aquagenic urticaria about two months ago. i have experienced symptoms for the past year. they prescribed me with two separate antihistamines and i got relief from neither. they had me take them during separate time periods and then they had me take them at the same time. nothing worked. now they have me on one antihistamine and taking beta alanine twice a day. i feel like my hives are getting worse. is there anyone with aquagenic urticaria or a condition that is similar that has experienced something similar? what is something that 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?

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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.

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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.

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