I have PV and have recently been experiencing extremely itchy skin during the night. Normally it’s the palms of my hands but I’ve also had it on my legs and last night it was at the top of my back. The itch is so severe that it wakens me during the night and can last up to an hour before I can eventually get back to sleep. Sometimes I’m awoken again with the same problem. I’m currently on 45mcg Pegasys once a week and I’ve previously had itching after showering but nothing as severe as this. I don’t think I’ve had an undisturbed sleep in weeks.
Has anyone else experienced anything similar? Any tips on how to stop this would be greatly appreciated. I have my haematology appointment in 2 weeks so will mention it then.
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Spam1979
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Hi, keep really well hydrated, cool showers or bath. I find Aveeno or Olay moisturisers suit me the best and moisturise several times a day. I also take anti histamines- Loratadine in the morning and Phenergran at night but ask your medic to prescribe so it agrees with any other meds you are taking.
Wearing cotton, trying to keep cool also helps. Every sympathy. Aime xx😻😻
Thanks Aime. I use Aveeno and take an antihistamine before bed and feel fine. I just find it strange that I wake up during the night with this uncontrollable itching!
I have ET and the itch on my legs and hands esp at night can also be unbearable.
Ive asked for advice in the past from others and the best advice i every got was put your cream on your hands, legs etc and then wrap then in cling film.
I thought this was really strange advice but after trying everything else i decided i would give it a go. I worked brilliantly for me allowing me to have a undisturbed sleep.
I take photos to give everyone a good laugh of my clingfilmed legs and hands
HI Spam1979 i suffer ET jak2+ i am suffering the worst itch going i saw my consultant on Wednesday and told him about the itch so i he got the pharmacist cetrizine antihistamine tablet that i take at night and also got betnovate scalp application if the head is itchy apparently it is all part of having an Mpn hope you are cured soon
I've had a good think about this....my itching would start about 1pm in my arms, then creep up my body, down my back, thighs, then just before bed, to my legs, and centralise above my knees. I was exhausted from little sleep, and was scratching most of the night until I fell asleep exhausted and had about 4 hours if I was lucky.
I did go to my GP who prescribed Atarax, and as this is a sedative it works really well, but I didn't want to be knocked out every night like that.
Two thing I notice though...no itching whenever I go on holiday to a sunnier climate (I smother in factor 50, cover up and sit in the shade). Secondly, Saturday night is always curry night for us...so down to our local curry house and I usually have a madras, jalfreizi or a Ceylon (all on the hot side)...no itching at all!
I'm assuming 'heat' is the common denominator here, so I now take one tablet of Curcumin every morning, and this seems to be working.
I sympathise with everyone who suffers from the dreaded itching, its the worse side effect for me by far.
I have ETJAK2+, never suffered from itching so can't speak from any experience. Just wondering, could this itching be caused by heavy metal toxicity? This could be the reason why the itching gets bad when water gets on the skin, and of course water and metals conduct electricity and if there are metals under the skin possibly stored in fatty tissues, this would then cause the itching. Good news is that it is possible to detox from heavy metals. Any thoughts on that?
I would speak to your GP. All patients are different with what helps calm this reaction. Over 3 years I have tried many antihistamines. For me what works best is UVB prescription sun lamp (via dermatology) and Beta Alanine (an amino acid). I have found my body gets use to all medications, which eventually stop working. Therefore I rotate the medications. This is my experience not a recommendation. Good luck with finding help. Sending you support, I walked in your shoes.
I have severe itching on shoulders back of neck, upper arms for almost a year now. Have PV with a Jk & have been on Hydrea for 2 years since my diagnosis. I had little itch on my chest here & there, wore off but back with a vengeance now, like you up scratching, to bathroom during night another scratching session. Spots are bleeding from scratching. Tried Alovera lotion, helped a little, tried Aleo Baby oil, not much success. Showed it to Dr in Hametology, she took pics, brought them to dermatology, they brushed her off said couldn't really say from photos, told me to go to GP.! I didn't. Thought rash with PV only appeared after a shower. There has to be some treatment for skin rash or is it part of the PV the pv symptoms that we have to live with? I know exactly how you feel. A nurse mentioned to me to try Calamine lotion. Didn't yet!
I had dreadful itching in the summer. Antihistamines didn’t touch it, Cold water swimming helped for about 2 hours as did aveeno and calamine. Now weathers cooler I am fine again. MPL Et on peg. Was 45ug 3 weekly in the summer when it was problematic.
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