severe itch when contact with water

[miin]

hi, does anyone else suffer with severe itch when in contact with water this happens when sweating, im on hydroxycarbamide and wonder if this is the cause. this is my first post as new here

[Paul_1971]

Hey,

Welcome to the site.

Itching is quite common for people with MPN's, its not down to the medication as such, really something unfortunately that affects people regardless of their meds.

I have been lucky myself and not really suffered but my sister who also has an MPN suffers a lot with itching.

Some people have had success with different approaches, anti-histamines is one, some have said a tea spoon of baking powder in bath water can work.

What can cause i believe after a bath or shower is the contrast in temperatures as you get out the shower/bath going from hot to cold and have seen some people have success in reducing the itching but wrapping in a very warm towel, or a warm bath robe to prevent the contrast in temperatures.

Hopefully you can find something that works for you, am sure there will be lots of suggestions.

Good luck

Paul

[hunter5582]

While hydroxycarbamide can cause a number of skin issues, what you are describing sounds more like aquagenic pruritis. It is something that many with with MPNs face. Here is one link to information that may help. mpnvoice.org.uk/living-with....

[Bield]

I itch a lot and bleed a lot when I scratch. I also feel the water in the shower like sharp needles. Very uncomfortable

[Wyebird in reply to Bield]

I have ET, is it PV patients who get this? X

[Murdoch01 in reply to Wyebird]

Hi Wyebird I have ET and itch but not to the extent that I can’t bath or shower. It seems to get worse when I am hot, using ice packs on my arms when it gets bad it is the only thing that helps me.

[Wyebird in reply to Murdoch01]

It sounds really awful I do hope I don’t start with it.

[Fizzydog]

Hi welcome to the group. I used to have terrible itchy skin at night as soon as I lay down in bed it would start & not stop. As soon as I was put on Pegasys it completely stopped plus the other symptoms I was experiencing all went. Pegasys to me is my wonder drug keeps me feeling normal & able to lead a normal life again. We are all different in how everything affects us. It’s best to keep trying all you can until you find something that helps you individually. I hope you find something soon as I know how debilitating and annoying the itching is.

[Tilly_Rose]

I had the itch after showers and didn’t know what it was it appeared that it was one of the signs that made my Gp refer me to Haematology as well as flashing in my eyes and red painful rash under my foot. They then diagnosed ETJAK2 so it could not have been Hydroxy that caused the itching, hope this is helpful

[Innessant]

If you have an MPN then you are likely suffering from a condition called aquagenic pruritis. This a side effect and can be really bad in some cases.I had to give up showers a year ago due to excruciating itchiness 5 mins after contact with water. I have PV and otherwise asymptomatic. Many people have ways to minimise effects but for me I have not found a good way.

[EPguy]

Hunter's link has the info you need. Here is another older report with some numbers.

<<A high percentage of patients with polycythemia vera have aquagenic pruritus...A large cohort of PV patients was surveyed. Of 441 patients, 301 had AP>>

Do you have Dx of PV?