Hi all, I am 73 and have just been diagnosed with Polycythemia vera. The journey started before last Christmas. I was having terrible itching after having a shower, as I felt it was a skin problem and knowing how “difficult” it is to get a doctors appointment I went to a private Dermatologist. He suggested that I have several blood tests to see if there was an underlying cause. The GP ordered a slew of blood tests which resulted in a high red blood cell count after a repeat test the following month a referral was made to Hematology.
After further blood tests and a DNA test a JAK2 variation was found, so far only venesection has been given but I see the Hematologist next month.
My biggest problem is the constant itching, antihistamines help but only reduces it slightly. Any suggestions would help.
like you I too have Polycythaemia vera (PV) and so totally empathise with the itching problem.
Itching is a very common symptom with Polycythaemia vera (PV) but most find it worse at the start of the journey of managing the condition.
My itching was worse after showering and at night when in bed or being idle.. unbearable at times. I found showering less and doing warm flannel washing helped in between taking showers helped as too being on treatment (interferon, hydroxy, ruxolitinib)
Also most Polycythaemia vera (PV) patients are/become anaemic and most of my itching was when my iron levels were crazy low.. now taking iron is often a big no no as this can elevate your hct level but once that settles it’s worth getting your iron levels checked and if low maybe speak to your haematologist and see if you can get a small iron transfusion (nothing to be scared about - like a reverse venesection) and see if your itching symptom eases.
definitely worth speaking to your haematologist and or clinical nurse as if it’s effecting your quality of life then it needs addressing.
Thank you for your post and welcome to our community.
We are so sorry to hear about your diagnosis of Polycythaemia vera (PV). We can imagine this must have been a shock for you and can be an overwhelming time.
We are sorry to hear that you are having problems with itching. Itching can be frustrating and uncomfortable, if you have not done so already we would advise informing your clinical nurse specialist or haematology/ treating team about any itching so that they are kept up to date and could potentially prescribe additional medications if needed such as an emollients, different antihistamines or other medications that can help reduce itching.
I can see that @Rammie18 has given you some excellent advice, in addition to this, you may find our page Itching | Blood Cancer UK helpful to read through as this contains useful information on common triggers for itching, itching as a side effect or symptom, home remedies for itching such as using cool water for showers and covering skin with a damp cloth during a flare up as well as other useful hints and tips.
Thank you Emma for your post. The brilliant leaflets and information on the website where my first port of call and explained things easily.Feeling cold and the constant itching are the problems I need to solve. I see my heamatologist early in December to learn how things will be going forward. I went for my recent venesection on the 19/11 only to be told after a bloodtest I didn’t need one!
I also have been diagnosed with Polycythaemia vera (PV) a couple of weeks ago.
I had the itching after a shower for so many years that I stopped taking showers regularly, instead I will have very hot bath and it seems to work for me. If I experience a really nasty itching (especially in summer trying to sleep when it’s hot and humid) my solution is to soak myself for a long time and it will go away. Recently I also started taking antihistamines when I cannot have a bath, ie at work. I also thought it was a skin issue and I’m not sure if it can only be Polycythaemia vera (PV) causing it because I suffer for the itching for more than 20 years. Unless I had Polycythaemia vera (PV) for such a long time without knowing.
I read for some people is the opposite, they need to finish with a very cold shower to avoid the itching. I guess everyone is different.
Hi there @MartinF . It’s good to see you are getting lots of advice and support from the forum.
I was diagnosed with Polycythaemia vera (PV) back in 2018 and have been on hydroxycarbamide ever since which keeps my blood levels in order. Like you, I suffer from the itching after showering problem. what is beneficial for me (and everyone is different fo course) is to shower under water that is as hot as I can take it and then switch to really cold water before towelling off. Worth a try.
You might also want to look at an organisation called MPN Voice that is focussed specifically on blood disorders such as Polycythaemia vera (PV). The editor won’t let me post a link, but just search under that name.
Best wishes,