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Aquagenic Pruritus
For years, after showering, I have suffered with a horrible, unbearable itch usually all over my arms, legs and thighs. In the past I assumed it was dry skin, and would maybe last about 15 minutes. Recently these attacks on my skin are longer, usually 30 to 90 minutes long. I use heat (a blow dryer) on the skin hoping that will help, or sometimes I stand in front of a fan blowing cold air. I usually find some relief in that, but not recently. I googled the symptoms and it sounds like a rare skin disorder called Aquagenic Pruritus. If anyone has this condition, Id like some information on symptoms and on treatment. Thank you!
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Yes, I did!! Just got some - it does work. Thanks so much!!
BA worked for me ; Dupixent did not, I was allergic to it; with BA the flares are quieted within. The skin reacts even with corticoid creams and otc lotions. I'm trying Cervae this week. No help with tree tree oil; cetaphil; lubiderm; Kiels moisturizing; hydroxzine got me looking like a dark skinned Palomino horse. I take my BA after shower so I know it works. The stinging is unbearabe to tears. I just take a benadryl at night. One small back to basics pink pill. try to keep it simple or the meds get incoporated into the disease like taking chlorbetasol; itches worse. My skin dont like it. Trial and error 2 years. BA and Benadryl currently.
Witch hazel calms my itching. I have a few spray bottles around the house I use night and day.
I too have been suffering with Aquagenic Pruritus (PA). I have no medical science or formal diagnosis that this is PA, but everything I have read about PA sure matches my symptoms. Itchy skin after showering is the onset of symptoms but within minutes I am in emotional distress, shallow breathing, restlessness, like I have lost my mind. It is a scary experience for me and my wife who observes me in the reactive state. It is a perfect form of torture. This goes on for an hour or more. I become extremely exhausted and have to lie down for some time until I catch my breath and feel somewhat normal again. As said in other posts, there is no apparent skin irritation or rash.
I have discussed this with my family doctor who previously had not heard of it. I recently had reason to see a hematologist who has some knowledge of it but would only say this is not a skin allergy, more likely a blood or nerve disorder. The medical profession apparently knows little about it at this time.
My research on line and postings here led me to try Beta-Alanine (BA) as a possible treatment. I use 3-4 grams of BA 1-2 hours before I shower and I can report that it does help. My symptoms may still be present but not as extreme. My hope is that medical science will figure this thing out. We need help.
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2 ReactionsGlad you found the information on Beta Alanine! I find that showering in the late afternoon/evening works far better...Lots of BA users that have AP report the same. Also, a I take 1500mg 30 minutes before showering and use Itch Relief Cream by CeraVue, not the lotion...I buy it on Amazon. For anyone else who is reading this, the BA I use is the NOW brand, also on Amazon. In case you have not find the Aquagenic Pruritus Support Group Facebook page, you may want to check it out...there is a lot of goo advice there. It is very important to get regular test done. AP can be a symptom of other illnesses/disorders. when there are other breakthroughs, they are reported there.
Long time poster on this thread; and for the last 60 days, I have been ITCH-FREE!!! Even without taking Beta Alanine (BA).
Unfortunately, I've done three things that might have affected the outcome and from my personal feelings of least effective to most effective, they are:
1. I severely cut back on alcohol. Mentioning it only because it was happening at the same time. I really dont think this was a cause of loosing the itch and after this weekend of concerts and entertaining, still don't believe it to be a primary cause.
2. I treated the Actin Keratosis AKs on my arms and legs with a combination of Trenointin & Florouracil at the same time. The trenointin really roughs up the skin on arms and legs to allow the florouracil to penetrate and work as needed. **(I will caution you to not treat your upper and lower arms at the same time and always put on a sun sleeve or bandage below the elbow to keep the skin from sticking to itself while you are sleeping. )
3. What I think did the most good.
I started on 10mg / day dose of Paroxetine.
Paroxetine is a anti depressant but at this dose not strong enough to notice any changes in behavior or thinking. I noticed the reduction in the Aquagenic Puritius itching after 4-5 days and after 10 days, I could take a hot shower, then towel dry immediately afterward; something I haven't done in years. Also used a hot tub for the first time in years.
So I continue to travel with BA on me at all times, but haven't needed it since starting on the Paroxetine. I have stopped treating the AKs, and will update this post in 2 weeks, once the arms and legs have fully healed.
The list of Meds I have tried to date:
Paroxetine - Jury is in deliberation on this one but I think this is it
Beta Alanine - Proven to work, you need to take it 20 minutes prior to needing it
Gabapentin - didn't work for me, and the brain fog was something horrible
Dupixent -didn't work for me but I was on it for only 6 months and apparently it can take 12 months
? some salt based med, that gave me a headache worse than the Korean Soju hangover I had in 1994
Best of luck to everyone
I'll update in 2 weeks
Good news! Please keep us updated on your progress…
Question…did your doctor prescribe the Paroxetine specifically for AP or itch? Or was this a lucky side effect?
My doctor is “by the book” and wants to see evidence, especially medical papers demonstrating evidence…is there anything out there on Paroxetine and itch?
I’ve been popping Beta Alanine a few time a day for over 5 years…I also have change in temperature itch flares…it works but I would like to find a better solution…
In brief; a pleasurable & lucky side effect. I also have temperature change and change in humidity flare ups.
Paroxetine was prescribed for prolonging sex. Previously very erection felt like there was a fat man in a little suit about to rip the skin apart at the seams. Paroxetine stops that feeling, without affecting other aspects. That is the reason I think Paroxetine is the proximate cause, it changes the sensation on the skin without affecting anything else that is noticeable to me.
As for your doctor, wanting to keep everything by the book, if their daughter had this condition; they would try everything on and off label. Tell your GP to issue it or tell them your AP has you depressed but you want to try the smallest dose of Paroxetine possible 10mg/day. Should be covered by insurance as well for depression; so go with that and reply back here. One person's observations are at most an interesting data point; 2 can become a trend.
Have you tried taking the BA before YOUR SHOWER?
I want to start by thanking this forum as your comments and advise have had a major impact on improving my condition. I am 55 years old and I’ve been struggling with itching after showering for the past 5 years. Like many of you, I invested thousands of dollars and hundreds of hours with a rheumatologist, neurologist, dermatologist and alternative medicine doctors that had no idea and understanding of what I was going through. Recently, a friend of mine emailed me a link to a Cleveland Clinic page about Aquagenic Pruritus https://my.clevelandclinic.org/health/diseases/22516-aquagenic-pruritus and it was the first time I had ever heard or read about this condition. I immediately realized it described precisely what I felt and continued reading and searching which brought me to this group.
6 weeks ago I purchased Beta-Alanine capsules (750mg from NOW SPORTS Brand). I am taking 2 capsules a day (one capsule 1-2 hours before showering in the morning and one in the evening). I can honestly say this product is amazing and it worked for me. The itchiness has almost disappeared and I feel as close to normal as one can be.
Again, I want to thank all of you for sharing your experiences as your comments and advise have changed my life!