I have had PV for ten years and am a 66 year old male. Phlebotomies & aspirin worked well for that time. Aquagenic priurits (itchiness on contact with water) had become unbearable by June 2022.
I went onto 500mg per day HU (Hydroxyurea).The itchiness started to decrease and now after 6 months has almost gone away.
I have come to the conclusion , for my body at least, that the White Blood Cell account (which had increased to around 18.0 (4.5-11 normal range) was the main driver of this painful side effect. I could not shower for 9 months.
WBC counts continue to drop to a more normal level.
I mention this as HU gets a lot of complaints on this site. For me it nothing short of a miracle. I feel fantastic.Do not dismiss this classic and effective treatment before trying it out.
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Congratulations, you found something that works, itchiness has bothered me for years. I have pv and my whites have stayed high end of normal for years and even with small dose of hydroxy I still have a mild itch.
it’s fantastic that HU has reduced your itch, HU can do that occasionally, I doubt that itch is related to WBC levels,perhaps more correlation as opposed to causation
Oh yes. The usual high Hematocrit but that seems easier to control. I am not obsessed with blood counts. I feel great...and PV really motivates you to live life whilst health is still there
That’s good to hear. Interesting on your thoughts of wbc. I caught a cold before Xmas and the itching after bath nearly disappeared. 2 weeks on and feeling well again itching come back with avengeance. I am sure it’s connected with the wbc but not sure how. Glad hu working for you. Quality of life so important
The fact is that when the body has an infection the WBC shoots up as a natural defence.This is for everyone .Seems your situation may be the converse of mine. Most experience shows Hot water to aggravate the itchiness. I must take very short cold showers ,that is far easier on the itchiness.Good luck ...whatever works....
Really interesting to hear about solutions to itch. I began to get maddening itch after sea swims in winter last year and it seemed to be linked to skin warming up again after cooling down drastically. It doesn't happen in Summer, presumably because I don't cool down as much in the water. Wearing neoprene on my core when swimming helps, as skin doesn't cool as much where protected by a neoprene layer - now I only get itch on exposed arms and legs. Not ready to give up on the sea swims yet so it's really good to know that there are other solutions if itch increases. At the moment it fades after about 20mins (of mad scratching!)
Thanks for post. I gave up on swimming 10 years ago after an agonising (post) swim in a stream.Sad, but you get over it. Do other stuff.Itching lasts 20-30 mins. You do not mention your age.
Glad you've managed to get your pruritus under control x
I don't think it's that people on here don't like HU as such....it's partly that treatment is not a one size fits all kind of thing.....what's great for one person can cause problems for another x
I agree with you. I suppose that those that are unhappy post the most. I just feel that I should add balance. Side effects always exist.We are blessed to live in these times of moderen medicine. I would probably have died had I got PV decades ago before understanding of the disease.
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