I am a 65 year old male.PV since 2012.Phlebotomies and aspirin only but since last week I commenced on HU.Healthy and fit otherwise.Mainly because WBC count is now 21.1 (after years of relative stability).Post shower Itching was getting intolerable (I stopped showering...for 9months).
Has anyone any experience of HU treatment helping with the itching?
You will hear from some with PV that the HU did help with the itching, so it is worth a try. However, Jakafi is generally regarded as being more effective for aquagenic pruritis. Unfortunately, in some systems you have to fail on HU before you can access jakafi due to its cost. If you do not find HU effective you do have the option of Jakafi. Note that some people also find Besremi or Pegasys more effective than HU.
Thanks Hunter. Yes I am keeping my fingers crossed but will follow your advice about assertive patients.
Yes. HU made a big impact on all my symptoms. I occasionally get skin pricking after a shower - more often when i’m / the weather is really hot and my skin is damp - but generally not such an issue. Wishing you all the best.
So far the HU has proved very helpful for me with hardly any adverse effects. I have been on 500 mg per day for 15 months. My WBC count is now in the normal range (it was out of range for about a year , very gradually increasing to 17) and I rarely have a phlebotomy , maybe every six months. Platelets were never a problem. Pre-HU I suffered from mild itching after showering , opting for cool water and not showering every day, but now it never happens, I can withstand warmer water (although I am now used to cooler).
I am also sleeping a lot better. This came about gradually, after being on HU for a few months and I cannot think of any other factor that may have played a part .
One negative is that I am finding jogging harder, which is not fun as it is part of my routine.
Good luck with your new treatment!
This a very encouraging reply, thank you!
Generally speaking HU is perhaps not known for stopping itch but for some it can, I hope it does for you. Rux is the main one for itching but maybe harder to get because of cost depending on where you are. Pegasys can help/stop itch for some although unfortunately for some can make it worse, maybe worth a try though because for some Peg can have some disease modifying properties maybe. Also Peg or Rux are not chemo.
Hi, I was diagnosed a year ago and went on HU. I'd had really bad itching for months (which I'd been trying to find the cause of, before being diagnosed with PV/JAK2). The HU did nothing for my itching (but brought the blood counts down), so my hematologist changed my prescription to Jakafi, and within a couple of days the itching was completely gone! It was a miracle! Not sure where you are based, but Hunter is correct: my doctor had to say that we'd tried HU so that my insurance would pay for Jakafi. Fingers crossed that HU works for your itching, or that you're able to access Jakafi. I know how debilitating this is...
Thanks so much for this reply which is line with Hunter (the PV Oracle...). I will see how it goes and then may move back to the UK where Jakafi is free of charge when on the NHS. Opinions and experiences differ on HU and itching.
Hi, I have PV as well but only on aspirin twice a day. I found that curcumin really helped with the itching. I take 750mg from Curamed.......Brand: Terry Naturally. I've noticed when I don't take this curcumin I itch more. Kerry
Thanks for advice. I shall consider Turmeric if HU does not work which is a possibility...it is often cited these days ( in the west) for many afflictions.
Hi, I have PV and am currently on PEG (And HU is in the process of reducing it). I always itch after showering and burning skin during the day. I try to shower with as cold water as possible and use PH neutral shampoo and lotion after (I use Eucerin). When I notice that the itching increases, I take an antihistamine pill that the hematologist prescribes for itching. It can be taken all the time, but I stop taking it when I notice that it is better. And it has a lot to do with what you eat, with protein. So you can at least try not eating red meat, no dairy, and no eggs, and then see if that helps. What I've learned it comes and goes in periods, so now I know what to do to make it easier.
Thanks cvita. Interesting comments, thank you..Antihistamines are an avenue I will explore if HU does not lower the itching.The eating options would be too extreme for me as I enjoy a varied diet here in Thailand .I know that others see this differently.I just aim to get back to short cold showers from time to time.Swimming remains a dream...
You are very welcome, I know when I'm low with iron (after the venesections) and tend to eat a lot of meat, that itching is worse. As for the antihistamines, it takes some time to take them until it starts to woork. Enjoy being in Thailnad😀hope the itching is going to ease a little😀
Age 78, female, PV since 2014, on HU. The Itching has been with me all the time, so I don't shower more than 4 times a week because hot water starts it off, so in-between, cold wet wipes and a long handle back scratcher does the trick. Which is bliss and I can fall asleep with 10 minutes.
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