Aquagenic Pruritus

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?

For anyone following this thread: Come to the Facebook Aquagenic Pruritis Support Group! Also do some research on an amino acid called beta Alanine. It's used by body builders and others pre workout to improve endurance. Well it just so happens that one of our members was taking it before exercising and accidentally discovered that it stops her itch! Many of us have had success with it since. Of course, talk to your doctor before trying anything. And a heads-up - Beta Alanine can cause your skin to tingle (ironic, I know). You should start with a very small amount (like a pinch) or you may end up as itchy as you would from an Aquagenic Pruritis attack, but for a shorter time. Then you work your way up to an effective dose without too much tingle.

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!

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

Im a swimmer and for a long time practiced in a very warm, very chlorinated pool so the itching didn't seem un-normal when it started about 3 yrs ago. I quit that pool while still swimming. Starting about 2 years ago the AP ramped up to horrible; about a year ago to horrendous, when my wife found this site and I started taking Beta Alanine. It generally works really well, especially when I also chase it with a Gin & tonic. Some days are fine by comparison to others. I have noticed as few strange details about the AP.

If I swim, get out shower, towel dry and leave; its straight to Itch City.
If I swim, get out, air dry, I can them go about my business without discomfort or itchiness.
If I'm in the swim lane waiting for a set to start and someone rubs against my leg; In 5-10 min I'll be unable to concentrate on the Master workout, it itches that much.
If my wife wraps her legs around me; My legs itch for an hour afterward.
During a bad episode; The itching manifests itself more on the spots of skin damage (Actinic Keratosis) turning them very red, the itching isn't limited to those spots and on "normal" bouts there is no skin redness anywhere.
Type of soap doesn't matter
Hot showers are worse but it's incremental and a cold shower still causes the itchiness.(See above about toweling off)
Spa tub doesn't seem to bother me
Sauna doesn't seem to bother me.
Beta Alanine taken daily seems to help more and reduce the overall itchiness when it does happen, it requires another tablet.
Beta Alanine in tablets seems better than the powder form
Both forms take from 20-40 minutes to start feeling the tingling behind the ears which signals relief is eminent. It always seems to work top down, the legs are the last to stop itching.

My take away is there is definetly a pressure component to this, that i believe the simple act of toweling off is the proximate cause of. If i go for a run and then sit down on a chair: my legs will itch and If I lean back in that chair my back will itch, exactly the same as coming out of the shower. If i stood around until the sweat dried, I could sit down and not itch.

I am going to try Duplixent; and I'll let you know how it works out.

Im a swimmer and for a long time practiced in a very warm, very chlorinated pool so the itching didn't seem un-normal when it started about 3 yrs ago. I quit that pool while still swimming. Starting about 2 years ago the AP ramped up to horrible; about a year ago to horrendous, when my wife found this site and I started taking Beta Alanine. It generally works really well, especially when I also chase it with a Gin & tonic. Some days are fine by comparison to others. I have noticed as few strange details about the AP.

If I swim, get out shower, towel dry and leave; its straight to Itch City.
If I swim, get out, air dry, I can them go about my business without discomfort or itchiness.
If I'm in the swim lane waiting for a set to start and someone rubs against my leg; In 5-10 min I'll be unable to concentrate on the Master workout, it itches that much.
If my wife wraps her legs around me; My legs itch for an hour afterward.
During a bad episode; The itching manifests itself more on the spots of skin damage (Actinic Keratosis) turning them very red, the itching isn't limited to those spots and on "normal" bouts there is no skin redness anywhere.
Type of soap doesn't matter
Hot showers are worse but it's incremental and a cold shower still causes the itchiness.(See above about toweling off)
Spa tub doesn't seem to bother me
Sauna doesn't seem to bother me.
Beta Alanine taken daily seems to help more and reduce the overall itchiness when it does happen, it requires another tablet.
Beta Alanine in tablets seems better than the powder form
Both forms take from 20-40 minutes to start feeling the tingling behind the ears which signals relief is eminent. It always seems to work top down, the legs are the last to stop itching.

My take away is there is definetly a pressure component to this, that i believe the simple act of toweling off is the proximate cause of. If i go for a run and then sit down on a chair: my legs will itch and If I lean back in that chair my back will itch, exactly the same as coming out of the shower. If i stood around until the sweat dried, I could sit down and not itch.

I am going to try Duplixent; and I'll let you know how it works out.