life expectancy for polycythemia vera

doctor thinks i may have this all my blood work comes back in the normal range expect for the hemoglobin

May God continue to Bless your Health.

Im scared just got dignoised got to go with more blood work.

What is it called. I have had P.V. for over 20 years, maintained well, had a kidney transplant and am now presenting with a lot more P.V. symptoms.

How are you doing now in 2018?

Still okay in 2018?

Hi , I also had the most awful itching , when I went onto Hydroxyurea the itching stopped - what a relief, have now been on Hydrea for 7 years, and doing extremely well on it, I dont go for any phlebotomies, I found them to be awkward and painful, some nurses are not the best with those big needles!

I am 73 yo and have had polycythemia for nearly 20 years I see the specialist 6 times a year. I take hydroxycarbamide and have an occasional phlebotomy once a year. I feel great and no longer worry about my longevity. Please do the same !

Thank you fpr writing that. I just learned my dads been diagnosed and i couldn't believe it. Somewhat relief hearing it from someone experiencing it

I have just been diagnosed with PV and i want to speak to someone about it who also has it...im a bag of nerves...

Whose your doctor?

i was diagnose with Polysythemia when i was 40 i must have had it way before that i had High Blood pressure, was taken the highest doses of blood meds , had to find the right Dr, not all no a lot about it often is treated has High blood pressure or Hepatitis c like my son was told after i told the Dr he was seeing to check him for it, he did not sure enough i brought him to my Dr's he was diagnose with it treated immediately had high blood pressure an his spleen an liver counts were up, after 1 phlebotomy, everything went back to normal same with mine, i know have normal blood pressure my liver counts have been great, i take a baby aspirin every day in the afternoon , have had this for over 20 years yes they keep your iron low but you do need to replenish it by foods not iron pills, i am 61 years old the only other complication i have had from this, it can cause panic attacks,when your body starts to feel it is time you will know your blood pressure will start to rise, i take a Xanax, helps so great along with baby aspirin, has long has it is treated right you will live a full normal life, i no people who have had it for over 40 years i had it at least 25 years that i no about,an going strong, they are coming very close to a cure, has Long as You are being treated you should live a normal life, probably so many people that have high blood pressure that do not realize they may have this, just recently my neighbor asked me what it was i had cause a 19 year old had the same symptoms when i told her she informed the mom an sure enough he had it, most likely saved his life,your Hemorcrat is over 47 especially 50 you need blood out , i eat beans especially Lentils to replenish my iron, my numbers have been so good last few times i rely did not need a phlebotomy, i asked them to take 1 or 2 litters witch is less then half of a half pint very little blood, good luck ev1 an enjoy your life if under control you will live longer then most people, at least you no what caused you to have high blood pressure an high liver counts most people do not know an under proper treatment you should no longer have any of liver or blood pressure issues or spleen, infections can be seen very easy also cause they gather your white blood cells

All-

I've seen a lot of posts about being diagnosed young and the fear that comes along with that. My dad was diagnosed in 1985 and has the JAK2 mutation. He got a few phlebotomies after diagnosis in 1985, but then stopped treatment (he can't remember why he didn't go back and just remembered last month that he might have been diagnosed in 1985 lol). He lived with the high levels, and due to luck or genetics, never had a stroke or heart attack. He was re-diagnosed in 2011, and has been doing phlebotomies every 3 months and taking baby aspirin since then. He's now 64 and feels great (minus the itching that keeps him up at night once or twice a week). He's been living a normal life with this disease for 33 years (and I'm hoping to get at least 15 years more out of him). Everybody is different and in his case, he just isn't a big clotter (as the doctor at Mayo recently told us).

I was diagnosed with PV vera 8 years ago. After giving 26 pints of blood, taking hydroxyurea, my numbers climbed. My Doctor suggested to try Jakafi and in the last three years my numbers have been perfect, and I haven't had to give any blood. I feel great and have had no problems taking the medication. Jakafi is expensive, but so is life in general.

I am 74 and had PV for 32 years so I think I am lucky