It’s a bit controversial as I was anaemic before my Polycythaemia vera (PV) diagnosis and often people are diagnosed with anaemia after diagnosis.
If you look up the symptoms of low iron they include itching and craving of non food substances. Many people crave paper/card/ice and even dust (which is a bit eww) but thankfully mine is fennel seeds.
I now don’t itch all the time but I know when I do it’s due to having low iron.
My iron level and ferratin level is in low single digits when it should be triple digits. The issue with increasing your iron is that it boosts your hct level which is the one that often determines whether you have a venesection. Equally, when you have a venesection it lowers/removes iron from your body so you can see how counterproductive it is.
You can check your iron by doing a blood test, sometimes it’s automatically done when you have a full blood count but you can request this and it’s easily done.
If it is low iron it’s best to discuss this along with the itching with your med team or your gp. Tablets don’t work for me hence the infusion and you need to be incredibly low in iron to get a transfusion else it can be done via tablets.
It sounds gross but I’ve had to stop showering everyday and have flannel washes inbetween. Which has helped I think. And so far (touchwood) no complaints of smell :s
Another forum poster also had extreme itching which was massively effecting her quality of life and mental health. What helped her massively was taking ruxolitinib.
This was only available in Scotland and wales and only just been approved in England but only when Hydroxycarbamide doesn’t work (you need to be on it for a few months)
Again, totally empathise with you and the itching I know too well how awful it is.
The iron was what it was for me and though you can buy iron supplements I would definitely recommend discussing this with your med team first!
If you haven’t got a haematology appointment soon give your gp a call and get them to pass on a blood form with your iron levels checked.
As a Polycythaemia vera (PV) patient you should also have the capability of walking in for your blood test without going through swiftqueue or you can get them to label your blood test as urgent so you don’t have to wait days/weeks like most people are experiencing.
Hope this is the fix you need