A Conversation with an MPN Specialist: Polycythemia Vera

[@glnbrook1286]

I was diagnosed year 2023,and doctor prescribed me Hydroxyurea blood count sometimes good ,sometimes bad just recently i have blood test and my platelet count 453. Any foods recommend to me to lower red blood?

[@barbarabrits8280]

Thank you for answer. Continue taking heart etc meds and Hydrea. I find i get virtigo quite often. Causing falls alot. Why?

[@glnbrook1286]

I have experience very severe headache, bed sweat at night, feel itchy after shower,my gums if i tooth brush easy to blood,blurred vision sometines,sometime having red eye,swollen feet if i eat fork ,beef,back pain .Sometimes in a year i feel pain in my abdomen swollen spleen. When i go to the Doctor hematology, The doctor recommend me to have a bonemarrow test and Im very scared of bone marrow test .I heard it was very very painful. Then I go to another Dr. And have second opinion for blood test and found out that i have Jack2 .And diagnosed of polycythemia vera (PV) and prescribed me of ,aspirin Hydroxyurea . For my hypertension Losartan,amlodophin Now since i have diagnosed more the 1 year now and still surviving.

[@mcgraw90]

Yes itching 2014 before “diagnosis” in 2016. Led me to self- diagnose. Awful. JAKAFI stopped the itching within hours! Now, I have started to itch if I am late with the medication.

[@mcgraw90]

Taking rux since 2019. Allele % 68%. On 03 08 24 allele % now 74.9%. Rux did not help with the population of mutant stem cells. Or am I losing relatively more normal stem cells, during the loss of stem cells that may occur during normal aging?