I have just been diagnosed with Polycythaemia vera ('PV') and positive JAK2.
I have had chronic pruritus for 6 years and it has driven me crazy. It is only lately that my Dr did blood tests which gave her concern and did further tests. I cannot understand why this was not discovered before. She is waiting for advice from a haematologist but if necessary I will go private. I have found the forum very informative but must admit to being terrified but at least I may be able to cure the wretched itching so I can wear the clothes in my wardrobe.
Firstly thank you for posting and welcome to the forum.
Though not many have heard of Polycythaemia vera ('PV'), there are a huge variety of people whom have the condition here so never feel you’re alone with the condition.
Itching is crazy and I can totally empathise with you. I’ve been diagnosed for almost 6 years now and have to say that I am and my medical team are managing the condition well with no major impact to quality of life. It takes time but it’s certainly achievable.
there are many posts relating to Polycythaemia vera ('PV') with a lot of active members happy to answer questions and support you along with the amazing nurses and support line here.
Hello there @slinkett, welcome to the forum from one Polycythaemia vera ('PV') survivor to another. I’m so sorry to read of your diagnosis and those years of pruitus, that must have been so literally irritating.
I’d say it’s great that you figured out what the itching was caused by but I totally understand your terror at being diagnosed with Polycythaemia vera ('PV'). It is really scary but for me has become less so as I’ve come to understand more about what I live with. I’ll just share the Blood Cancer UK information about Polycythaemia vera ('PV') here in case you haven’t read it: Polycythaemia vera (PV) | Blood Cancer UK
Like dear @Rammie18 says, Polycythaemia vera ('PV') seems not to be well-known and even our doctors might not know about it. It’s a pretty rare condition like other Myeloproliferative neoplasms ('MPN') and I’ve found since my diagnosis with it in 2023 that no one I know has ever heard of it! It can feel pretty lonely but knowing others around the forum who live with Myeloproliferative neoplasms ('MPN') make it easier.
I don’t want to bombard you at this stressful time but perhaps something my lovely haematologist tells me might be of some comfort. I’m told that we are more likely to live into old age with Polycythaemia vera ('PV') than to die from it. My experience so far is that I can live an almost normal life with this blood cancer, so I’m giving that a good go!
Do please keep us posted about how you get on @slinkett. I imagine you’ve got further testing coming up, and may I suggest keeping note of symptoms and any changes you notice. There are apps available and downloadable ways to keep note, called Myeloproliferative neoplasms ('MPN')10 I believe, just let us know if that’s of interest and we can share links to those.
Thinking of you at this difficult time, I’m glad you found the forum.
Welcome to our community and thank you for your post.
We are sorry to hear that you are going through an understandably frustrating and worrying time.
We hope that you hear back from your doctor soon with some advice from the haematologist.
I can see that others have shared their experience with you and given some great advice.
Itching can be really challenging to overcome or manage. If you have not done so already, we would advise informing your GP about your itching as they may be able to provide medications or topical lotions.
In case it is useful, we do have a webpage on Itching | Blood Cancer UK which includes ways to help soothing an itch and common triggers as well as information to help understand itching in more detail.
As well as this, our colleagues at Myeloproliferative neoplasms ('MPN') Voice have some general information around itchy skin, as well as some tips which have helped others with this symptom - Itchy skin – MPN Voice.
If you would like to talk through any of this with one of our nurses, please get in touch on 0808 2080 888 or email us at support@bloodcancer.org.uk
Do take care & keep us updated on how you are doing.