Aquagenic Pruritus

Gabapentin did not work for me =/ My allergist put me on it for about 2 months and never had any relief. On to the next medication...

Hey all! I've suffered with AP since I was about 13 (currently 27) and in the last 6 year it has increasingly gotten more severe and more frequent. I have tried EVERYTING! Diet changes, lotions, creams, oils, change in body wash, razors, shaving cream, etc. Finally started seeing a doctor for it because I am going crazy! I've called my mom after a shower many times in the last few years in full on tears and explaining how crazy I feel! So far my doctor has tried me on individual and combinations of meds including Zyrtec, Cyproheptadine, Amitriptyline, and Gabapentin. Now about to start naltrexone with the Xolair shots as the next option if the naltrexone fails. I am happy to have finally found a doctor that listened to me and is working with me every step of the way. She is literally running down the list of medications that follow separate physiological pathways that can result in severe itching. My doctor also linked my cold uticaria to my AP; apparently most AP sufferers have an allergic reaction when their body heats up; but mine does it when it gets to cold too fast. Unfortunately my AP is triggered by humidity as well and I live in Florida where it rains and is super humid constantly. And moving to a cooler dry climate is supposed to help but my allergy to the cold restricts me from doing so..

I have seen that some people get relief from beta-alanine supplementation. I know beta-alanine is most commonly found in pre-workouts and I can't recall ever having relief from itching while I was taking pre-workout. Recent heart issues prevent me from taking pre-workout any longer. So I am thinking of trying the beta alanine on its own if the naltrexone doesn't work; prior to starting the Xolair shots (which have me a little nervous). I was just curious if anyone had any evidence based text about beta alanine in the treatment of AP; the healthcare professional in me is curious how it works physiologically/pathologically to stop the itch..

And I am so sorry that everyone here suffers from AP; I would never wish this condition on anyone!

My 14 year old daughter has been recently diagnosed with this as well. She has been prescribed 20mg of reactine twice per day which has seemed to help so far with the awful itch.

Hi, I also have this godawful condition and can further attest to the effectiveness of Beta-Alanine (BA). I found out about it from the same Facebook Support Group that @crunchymommy mentioned above. I mostly have my "attacks" after showering (or if I've sweated a lot, thank God I live in Sweden). As far as the showers/bathing goes - If I take 1 scoop (~1g) mixed with water 15-20 minutes prior to showering I don't feel any itching at all. My current supply is in crystal/powder-form, but I've heard that pills are also available (I just bought the first one I could find).

The only side-effect I have experienced thus far is a very slight sense of heat and tingling on my face and upper torso that only lasts a short while some few minutes after taking the BA. Compared to a full-blown attack it is like a mosquito bite in comparison.

Judging by the testimonies above I'm guessing that we don't necessarily all suffer from the exact same disorder (if that's the correct term?) since some of you describe getting relief by using wildly different medications, but rather that the symptoms are very similar. My point being that I don't think BA will help everyone - but going by the experiences people have shared in the Facebook Group BA seems to help at least 70-80% if not more of the people there. The required dose and whether the symptoms disappear altogether varies from person to person, but everyone making a post after having tried it that I can recall in recent memory praised BA as the only thing that's given them a noticeable proper relief from symptoms.

I wish some research could be made on this substance with this use in mind since it could result in a specifically engineered drug instead of this supplement. Being able to get this on prescription at a pharmacy would be really nice here in Sweden since our medicine is fully subsidized if you reach a certain amount in expenses over a 12 month period (I have others for unrelated reasons). Further research could hopefully also investigate whether this is safe to take while pregnant - something that hasn't been done at this time to my knowledge. Not an issue for me personally, as a man, but I bet pregnancy is hard enough without having to deal with something like this too.

That ran a bit longer than I intended.

IN SHORT
I also recommend Beta-Alanine, it seems to work for a lot of us

I need help! I burn, itch, stinging, biting and crawling skin after a shower. It started about a year.a go and now is worse. It last 2-3 DAYS. I have been tested for PV (bone marrow test negative), allergies both skin and blood, I have no allergies. Tried all antihistamine,perscription and H2 inhibitors ones too. No change or relief.
Already on gabapentin for a spinal cord issue. Test to see if I have started menapause to see if that is it, no hormone change. Primary and allergist said it was idiopathic. I NEED help. I have taken out gluten. Been to my neurologist said make sure take medicine on time, which I do. Who do I see, what do I do, I cry myself to sleep some nights. As long as I don’t take a shower this does not happen. I am afraid to take a shower!

Where do I buy the BA from and how long does it take to work?

Beta Alanine is the only thing that has helped me so far, tablets seem to do better than the powder.

Has anyone tried Duplixant? It's of label for this condition but my Dermatologist is going through the paperwork process now. Any one else tried this?

Hi @davef and welcome to Mayo Clinic Connect. I'm tagging @gardeningjunkie and @walisky who have had experience with DUPIXENT® (dupilumab), albeit not for aquagenic pruritus.

Dave, how long have you been dealing aquagenic pruritus?

My husband does not have aquagenic pruritus but he has been taking Dupixent. A dermatologist recommended it for my husband's itching and his breathing problems. It cleared up his skin and he no longer struggles to breathe. A nurse came to the house to show him how to inject himself every other week. It's very simple. A specialty pharmacy delivers it to our house. It has to be stored cold and then allowed to warm to room temperature for 45 minutes before injecting. The used needle goes into a provided Sharps container which has a prepaid postage box to use when full. I looked up the condition you have and I hope that this is the answer to what sounds like a difficult to live with problem.