Aquagenic Pruritis—Severe Itching from water

[Parekklesia2020]

I was diagnosed with polycythemia vera in 2020. So far treating with phlebotomies (not medication). This year have developed aquagenic pruritis. Severe, stinging itching lasts about 20-30 minutes after exposure to water (and sometimes from perspiration). Taking Claritin 3 times per day and sometimes Beta-Alonone. But doesn’t always work. Anyone else have this problem and any suggestions to alleviate it?

[Sprat19]

suffered from the itch really badly in the summer. The only remedy I found useful was Aveeno . The one for very dry skin. Also bizarrely swimming in the River Thames. “ regular / bath or shower agrevated but cold water riverswim helped for a few hours.

[Parekklesia2020 in reply to Sprat19]

Thanks. I’ll try Aveeno. Similarly, my itch doesn’t seem to be so bad after an ocean swim. Fingers crossed that remains the case.

[RoundTheWorld]

If you search for itch under the MPN Voice posts there is a lot of useful info. Sorry, as I know how distressing it can be.

[ainslie]

sorry to hear you are suffering from the dreaded itch, I used UVB photography daily for about 10 years, it worked really well when I was venisecting only, I am now on Rux which has miraculously stopt the itch completely, I was a Olympian itcher.

Pre Rux I also found that fairly vigorous puffing type exercise, jog, speed walk, cycle for 30 mins pre sower helped.

[Parekklesia2020 in reply to ainslie]

Thanks for your helpful reply. Did you use a home UVB phototherapy device? If so, how did you choose one? They seem to be fairly expensive so I would want to choose carefully.

[ainslie in reply to Parekklesia2020]

Yes I used a home professional one, I am in UK and the best one was a Waldman at the time , made in Germany, it’s about the size of a normal room door folded and folds out to be about the size of two doors, I think in the US they also have Daavlin, the Waldman was about £3500 when I bought it around 12 years ago, it’s been 100% reliable, they are expensive but depends how bad the itch is, mine was impossible and Rux wasn’t around and Peg made it dramatically worse for me but can help others.

I also have a small Walkman for travelling in Europe and a small Daavlin for using in US.

The benefit of having a home one is you can adjust the dose yourself, I used to do the minimum dose daily to keep the itch at bay ie don’t over do it. I did daily low dose for about 10 years and no skin damage to date. UVB phototherapy is 320 NM which is allegedly the safest and possibly a safe wavelength.

However looking back I wished I could have got on Rux right away, it usually eliminates itch, for me it normalised all labs except lymphocytes a touch low , my BMB is better and excellent since going on Rux and my AB is now allegedly 1.08%, I don’t have any side effects , it’s my 7th year on Rux and 14 since diag.

Feel free to ask more if it helps.

You will have read many different things have tried on here for itch, the only things that worked for me as an Olympic itcher was UVB, exercise before shower and Rux. Beta alanine came in recently but I havnt had much experience with it but some report good results, whether it works for serious itch I don’t know.

[william-Indo]

Just try Zyrtex.It work very well and safe for long term use.

[Luthorville in reply to william-Indo]

2nd vote for Zyrtec

[rcan_sMF]

Sounds really difficult to bear. Suggest that, if possible, you look into a water softener, if medication is not an option for you. Keep in mind that you need to try and pin down how much is the water and how much the is the underlying issue, if at all.

Know that sounds hard to do so suggest, if possible, taking a shower or two at a besties’ house, the gym, etc. -outside of your local neighborhood. Anywhere that you’re comfortable-vary the temperature of the water and bring a towel not washed at home. Was recommended to a friend of mine with similar pruritis issues and, in her case, it was the water. Good luck.

[chopinesque]

hi /

in hopes that I could be of some help I had pruritis but it ceased after I stopped using scented soap - completely stopped. If you are using scented soap along with your baths or showers, perhaps that is creating this issue-very best Evan.

[Cityreach in reply to chopinesque]

Hi I find using an iced gel roller over the itching till it subsides helps or ice packs , the roller is easier as you can just roll, keep in freezer use as needed, try dermacol menthol moisturiser too

[Parekklesia2020 in reply to Cityreach]

That sounds interesting. I’ve tried ice packs but sometimes they are wet which exacerbates the problem. Where do you find the gel rollers?

[Cityreach in reply to Parekklesia2020]

On amazon, they are actually a face roller google gel face roller they about £10 sometimes less just keep roller in freezer till needed then attach to handle to use

[Amethist]

I am fortunate enough to have only 1 very small area that itches on my right shin. The skin is always dryer there too. I’ve tried various solutions but the one I’ve found most efficient with long lasting effects is rubbing a little CBD oil on the area. Works a treat. It’s a very good moisturiser and no itching.

[SUFCbaldy]

I have the same problem and found that bathing in cool water using Aqueous Cream helps. Also pat dry rather than rub dry with a towel. I also take anti Histamine daily, Cetirizine. I still itch after bathing but it has reduced. Hope this helps.

[Brook04]

My husband has polycythemia he also gets the itching specially after a shower , normally he put a t shirt on straight away or goes for a run. It normally helps.

[Innessant]

I had the same for almost 2 years. I had to avoid showers. Just minimal sponge bath. After two years it appears to be much improved. I did not take any medication. It was really awful. There is hope. Good luck, Nigel.

[RoundTheWorld]

from my earlier reply to someone else, in case any of it is helpful. (Also some people also use beta alanine but I haven’t tried it).

I stick to a few washing products that are mild and work for me (in my case Surcare washing liquid for clothes, Child’s Farm for my skin and I dress in mainly natural fibres. Dry and dress quickly after bathing (patting better than rubbing) and I use hydromol ointment on my arms (hydromol intensive with urea helped a lot but I can’t get hold of it in uk these days). . When things were really bad I used to apply ice packs to my skin (through a thin layer of material to avoid cold ‘burns’) - this calmed things. Try not to scratch but gently rub or hold the skin and it eventually calms down. I also used Jojoba oil for a bit and that also helped a little.

[Pogm]

I tried everything to alleviate the itching but the only pathway for me was, and is, a small dose of Jakafi. I take 5mg, 2x daily. The itching is 90% gone! My MPN specialist was very helpful in getting 100% coverage for the drug from the academic institution she is affiliated with. See if that is a possibility!

[MaggieSylvie]

I moved to a different part of the country, so I firmly believe it is to do with where the local water comes from. I never got a diagnosis but I used to come up in itchy bumps all over any soft part of my skin after a bath. It used to disappear after a while.

[Tipsy2023]

good afternoon this may seem a frivolous answer to what has been an irritation for me too over past few years . I cover myself in Huile de douche shower oil with almond oil from LOccitane and it has really helped I do it before getting into the shower so it has a chance to be more effective.. regular use seems to improve efficacy … I do not have shares in the company so hope this recommendation is ok . Seasons greetings one and all . L

[GardNerd]

The itching is one of the most annoying symptoms of PV, for sure. I'm sorry you're having to deal with that.

I'd suggest talking to your doctor about getting on a medication, like an interferon or Jakafi. For me, the itching decreased and then completely disappeared after being on Besremi for about a year. Of course, I didn't get on Besremi to help with the itching. Instead, I had learned that my PV had progressed over all the years I was doing phlebotomy-only. I started Besremi in an effort to modify/slow disease progression. Having the itching stop was an unexpected bonus for me.

You don't mention your age, and I'd definitely suggest considering a medication (rather than phlebotomy only) if you have a lot of years ahead of you. The disease progresses without treatment - slowly but surely.

Here's my experience on Besremi:

healthunlocked.com/mpnvoice...

Best of luck to you!

[Parekklesia2020 in reply to GardNerd]

Thank you so much. I was diagnosed with PV while living in Cyprus and my hematologist-oncologist did not do a bone marrow biopsy as my tests showed the presence of the defect on thr Jak2 gene and the procedure there is still done in-office and so is more invasive and since she didn’t need it to confirm the disease, it wasn’t done. I have been reluctant to start drug therapy, thinking the more natural approach is best, but since moving back to the US, my new hematologist promptly sent me for a bone marrow biopsy, and explained that drug therapy, unlike phlebotomy alone, tackles more than just red blood cell count. Your story with your Besremi experience affirms what my doctor has said. I’m awaiting the results of the biopsy and will strongly consider going on drug therapy at this point, even if (fingers crossed) the disease has not yet progressed. Thanks for sharing your story.