I was initially diagnosed with Essential thrombocythemia (ET). They now seem to think it is Polycythaemia vera (PV). Can anyone suggest what to try for itchiness?
Great to hear from you again @berylsmart
I attach a couple of links for you.
Recently diagnosed - Recent diagnosis - Blood Cancer UK Online Community Forum
Itchy back and arms - Living with and after blood cancer - Blood Cancer UK Online Community Forum
I will copy the blood cancer nurses in case they can add anything although I see they have answered one of the links I have given you. @BloodCancerUK_Nurses
I hope this helps and please do also ask your medical team, possibly your nurse contact if you have one
Please do keep us updated and really loo after yourself.
Hey there @berylsmart, really sorry to hear about that itchiness. I’ve also got Polycythaemia vera (PV) and am keeping a note of what helps with the dreaded itchy skin that we are prone to. Thank you @Erica for that link, there’s some great tips in there from others’ experiences. I’m attending a blood cancer conference on Saturday and will look out for any info regarding the Myeloproliferative neoplasms (MPN) itch.
Thanks Duncan very much.
So very to hear that you are suffering with itchiness. May I ask whether your Haematology team have suggested any treatment for this symptom you are experiencing?
We have some information on our webpages Looking after yourself with PV | Blood Cancer UK where there is a section on managing itching:
Itching is a common effect of Polycythaemia vera (PV). The medical name for this is pruritis.
Itching with Polycythaemia vera (PV) can come and go, and can range from mild to very severe, although there’s usually nothing visible on the skin. Many people report that it’s worse after a shower or a bath. Talk to your hospital team as they can prescribe medicines and skin creams that may help.
You can also try some self-help tips, suggested by other people with Polycythaemia vera (PV):
- Lower the temperature of your shower so it’s warm, not hot.
- Follow your hot shower with a cold shower.
- Pat yourself dry gently rather than rubbing.
- If the itching flares up, switch to a sponge wash for a while.
Our colleagues at Myeloproliferative neoplasms (MPN) Voice have some information here that may be useful Itchy skin – MPN Voice
If you would like to talk things through, please don’t hesitate to call.
@berylsmart our health information team are currently updating our information on itching so if you would to please contribute or have a read here: Can you help us with our information about itching?
Though it’s extremely counter productive, I get itchy when my iron levels are low.
Worth getting it checked and discussing with your medical team.
I got really itchy in my early days but with treatment for Polycythaemia vera (PV) it’s definitely settled…
People have all given sound advice and definitely worth a try one by one
@berylsmart after years looking for insect bites thinking they were the cause of the itching, I found antihistamines by a certain German supermarket with a “little” middle aisle worked.
Also talc powder and skin lotions that were honey based seemed to ease it.
Some swear by tapping their fingers as a distraction mechanism as well.
Given it tends to be a reaction to moisture in the air and on the skin, I wonder if it is down to our restricted blood flow meeting a high of oxygen being absorbed by our skin (H2O) at the nerve endings?
Looking forward to reading the Blood Cancer UK new advice sheet, was a great interview by the team.
Sorry to be a downer but talc can be a carcinogen depending on where it’s produced and by whom due to it being made with asbestos, of all substances.
@Duncan which is why our grandparents and parents doused us from head to toe with it as babies, never did us any harm As the Victorians would say, “With all that stuff in it, it tastes foul, so must be doing you good!”
Today most of the talc is based on corn starch, so basically you are covering yourself with raw Wotsits lol
Ha ha ha “raw Wotsits” how grim!
berylsmart What helped me when itching was at its worst was taking an antihistamine and instead of showering washing with a basin of water one limb , then drying that limb before washing the next. I also kept a tube of some organic aloa vera in the fridge which I would apply. Since my hydoxycarbamide has been increased the itchiness is minimal.
Thank you Liz, very much. My itchiness has reduced since the Hydroxycarbamide has been increased. But thanks for the other tips. I will look into those.