Hi just been diagnosed yesterday with PV/ET and I am very scared and hoping for any advice and wisdom from you. I am a 41yr old female and diagnosed following a routine NHS 40+ health check, I am symptom free at present just a bit of tingly hands.
I have been having some ongoing investigations for a few months now and my recent blood test confirmed I was JAK-2 positive and have very high platelets and raised RBC and WBC. I have been started on hydroxyurea and Alloprinolol for prevention of gout for the 1st month. My haematology consultant has decided against venesection as my platelets are too raised and this would rise them further.
The scary thing is I have never heard of these conditions and words like blood cancer and chemotherapy drugs are frightening me. I am not used to taking medication so I am struggling a bit. I am sure this is normal. The difficulty I have is I am the fittest I have ever been losing weight and started running to keep fit. So just a bit of a kick in the teeth.
On positive days I am thankful that my condition has been diagnosed so it can be managed, as undiagnosed could have caused something so much worse. Any advice would be welcome on your experiences of this disease, medication and more importantly when and how to tell my family, I was going to leave it until after Christmas as I know they will worry.
Sorry for the long post but obviously a very anxious time for me. Look forward to hearing from you.