I have polycythemia Vera and have very very dry skin, it doesn’t matter what cream I use it’s still very dry, I wondered if taking something like olive oil tablets would help
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Hi @whitestacks welcome and I am so glad that you have found us.
I wonder if you have spoken to your specialist nurse, consultant or GP as they know you and your whole medical history.
I would always consult them before considering any lotions or supplements etc…
I copy the link from the Blood Cancer UK website
Itching | Blood Cancer UK
I hope others can share their experiences.
Please do let us know how you get on and really look after yourself
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Hello there @whitestacks, welcome to the forum. I’m sorry to read of your diagnosis with Polycythaemia vera (PV) and that itchy, dry skin. Unfortunately I can empathise as I also have Polycythaemia vera (PV) and until recently very dry skin. You’re not alone with those symptoms, but aren’t they literally irritating?!
After some trial and error with moisturisers and my new haematologist teaching me how to moisturise properly, the dryness has thankfully reduced. If it’s of any interest, I try to drink as much water during the day as I can (up to half a gallon on the day before phlebotomy) which definitely plumps up my skin and veins—nurses often comment on how easy it tends to be to draw my blood, for example.
As for moisturising, after washing in the morning I apply liberal amounts of moisturiser with high SPF to areas of skin that will see daylight and then add another thin moisturiser on top. If I go out in the sun to hike, socialise or do chores I’ll add an SPF 50 sun lotion on top of my morning routine.
Not going to lie, it’s a bit annoying doing this every day, but my skin is so much less dry than before. I was getting cracked knuckles and all sorts that can obviously increase the risk of skin infection, which we don’t want with Polycythaemia vera (PV) due to weakened immunities.
But at the very least, drinking loads of lovely fresh water does do wonders. Hope this helps! Hope you’re otherwise getting on well with Polycythaemia vera (PV).
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Hi @whitestacks
Welcome to the forum and thanks for posting.
I too have Polycythaemia vera (PV) and like many others if not all have had excruciating issues with itching.
Unfortunately one shoe doesn’t fit all and it’s a case of trying lots of things til you find your solution and posting here hopefully we can give you some good for thought.
My itching was worse during my early years and though I have an antihistamine everyday regardless I would say I get itchy episodes when my iron is low. Yep the same low iron that keeps my hct at bay. A common side effect to have Polycythaemia vera (PV) is becoming anaemic which has the very common symptom of itching.
When my levels are stable and I get itchy my haematologist books me in for a small iron transfusion as I can’t tolerate tablets and/or changing diet doesn’t do anything for me. It’s an instant relief for me.
I definitely would not take any iron supplements without consulting your medical team as this is counter productive to any Polycythaemia vera (PV) meds you’re taking but if it’s affecting your quality of life then it is an option.
I wouldn’t be surprised if your med team dismiss the itching as in the grand scheme of things it’s not a major thing but it can be for us sufferers.
I’ve heard aloe vera creams have worked for people as well as soothing unscented creams have helped others. I’ve heard someone say wet bandages help too.
I know warm water when bathing and showering can make the itching more intense so maybe try flannel washes if that’s an issue.
I hope you find something that works for you soon and keep us updated.
It’s definitely worth discussing with your med team as it may also be your treatment that’s causing the itching if your taking anything for your Polycythaemia vera (PV).
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Thank you so much everyone for your advice I’ll definitely give them a try x
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You’re most welcome @whitestacks, I’m just sorry you’re going through this at all.
So @Rammie18, does that mean you’re still getting those low-iron side effects? Apologies if I was a bit blasé about the itching as I know it can be truly aggravating.
I second @Rammie18 suggesting the cooler showers/baths and using unscented skincare products and especially aloe vera as they’re proven ways to minimise the itching that so many folks with MPNs can experience.
Patting dry with soft towels rather than vigorously drying off is meant to help too. Good point about not taking additional iron—remember when I tried that to offset my fatigue, @Rammie18, what was I doing?!
And sadly, yes, some specialists dismiss the side effects we often have to deal with, like the itching and fatigue, but make sure to tell them any symptoms you experience so they learn to pay attention to those too. After all, we have to live in our bodies tolerating these blood disorders and their quirks!
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Hi @Duncan
I was extremely anaemic before diagnosis which kept my Polycythaemia vera (PV) from being discovered.
Another way of looking at it is that my low iron was keeping me alive but it’s not a way to live in all honesty.
I can’t remember the last time I had an issue with itching and showering is fine too so I’m definitely counting my chickens and feeling best as I know too well how uncomfortable and unsettling it is.
Honestly think the meds for the Polycythaemia vera (PV) is helping too even though itching is a symptom.
It’s crazy how it says the headache meds may cause headaches?!!! Is it a disclaimer so you can’t sue them if the meds don’t work?
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I remember you describing your anaemia so well that it taught me yet another thing to look out for (that my first haematologist certainly didn’t warn me of), although mine seems to be tolerable or I accidentally keep my iron levels in some kind of Goldilocks state! I think being vegan helps keep my iron levels lower as I eat relatively little of it in my diet 
Thank goodness your itching has stopped bothering you @Rammie18, I’m really pleased you’ve got at least one less annoyance. It’s these quality of life irritants that I’m finding are the worst part of living with Polycythaemia vera (PV). I’m so glad your medicine is working for you too, it’s about bloody time after your travails!
My fatigue is still coming and going a bit which I find super annoying when planning ahead. I can arrange to do stuff in advance and then the day comes and I’ll have to check how my energy is right up to the moment of activity, and still sometimes have to cancel or reschedule 
Better than not being here at all of course, so I’m mindful of my good fortune every day, but the random quality of life differences are a major aspect of learning to live with a chronic illness like Polycythaemia vera (PV).
Ha and yes don’t our medicines have ridiculous warnings?! Becoming a “human carcinogen” from taking hydroxyurea is my favourite/weirdest one. Pity—I could have donated at least 12 pints of blood by now!
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The crazy thing was after losing my sister to cancer I regularly donated blood as soon as I can so was getting venesections every 3 months before being diagnosed. Another thing that kept my diagnosis a secret and maybe me alive… crazy how things are on reflection
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Wow so those frequent blood donations likely helped offset your Polycythaemia vera (PV) symptoms, as well as the anaemia?! Funny how we can sometimes do good for ourselves quite instinctually, only to find out later it was more wise than we knew. Bet your sister would have loved that you donated blood.
I’d never had blood drawn or donated prior to all my diagnostic stuff due to queer men not being allowed It’s been quite a shock to suddenly have blood drawn multiple times per month, but thankfully I’ve had good experiences so far from all the needlework. Hope you do too!
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Antihistamines might reduce itching and you can get them either as pills or a cream for the skin most of them seem to be either shop bought or the type you have to ask a pharmacist for.Generally the pills can be bought in supermarkets but the creams are pharmacy only plus i’d guess there must be stronger prescription only ones.Otherwise try the same treatments that people with Eczema and Psoriasis use which involved putting an emollient cream on your skin after a bath/shower which stops the moisture escaping.
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