Hi the itching associated with pv is driving me mad at the moment. Been on different anti histamines, avoid hot water, etc. Night sweats make it worse. Someone spoke already about UVB treatment and I just wondered if anyone else had tried it and what kind was the best and was this done through your haematologist?
Aime x
Hi, there is lots of info on the MPD Voice website and also an article in the latest issue of MPD Life with lots of tips supplied by 2 PV patients, one of whom did use UV treatment very effectively. Hope you find something that helps
My itching has got worse since weather has got colder. I think mine is made worse by bigger differences in temp such as warm shower to cold bedroom. In the summer it wasn't as bad.
I have been dealing with the itch for some 7 years now, you are exactly right with regard to temperature, all of the research indicates that any temperature changes will effect your veins, which houses the PRV. Not just the temperature but also any vibration on the veins, it is referred to as the itch on the skin, however research has shown conclusively that it is the stimulation or pressure on the veins that causes the burning/itch.... Try and be gentle, soft and controlled anne bathing, dressing, etc.. Try and keep the same warm body temperature at all times, and please advise if you feel any difference. I am one of the very fortunate ones to receive the new trilal for JAKAFI, and I cannot express to you the difference it is making to my what feels like tortuous existence, I am eternally grateful, I have an incredible Oncologist who specializes in MPN I am very happy to share all of his knowledge, just ask, happy to assist, blessings and feelings of wellbeing to you all, Jo
Hi it might sound a bit strange but I get really itchy as well and and am allergic to most creams etc.. that would normally soothe it. My boyfriend is a climber and he has a little bar of what I call miracle cream (climb on) its supposed to be used for climbers but trust me when I say it is amazing! it is the only thing that soothes my itching.
this is what you should be looking for its 100% natural and you can buy it from most climbing shops. Give it a go and let me know how you get on.
Thank you Jennie. Will try it. Aime x
no worries, let me know how you get on 
My doc recently sent me to a dermatologist who gave me a med to take internally, which, he says, will not eliminate the itch altogether, but will ameliorate it. I've started taking it and it does seem to help. I'd be interested in the climbon cream and will look it up. Tnx, Jennie. I'm in Canada and wonder if it is available here.
Larry
Time for anothe appointment/blood test perhaps? I recently began to have a mild problem at night on going to bed (itching, restless legs etc). My regular quarterly appointment with the haemotologoist was a bit overdue. Anyway, I had the usual blood test and doctor sent me for a venesection and slightly increased my medication and that resolved the problem, at least, until the next time.....
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