life expectancy for polycythemia vera

Guest over a year ago

Could someone tell the connection between pcv and the propensity and risk of TIA's and blood clots?

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Guest over a year ago

My husband was diagnosed with PV two years ago at 55. His blood doctor that does the phlebotomys never told him what to eat or what not to take. His PCP said he is anemic from the phlebotomys and gave him iron pills. His iron levels were 5. He just had a phlebotomy and was told not to take iron. He is fatigued and gets out of breath easily.

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Guest over a year ago

In reply to gpat. What type of port do you have? My doctor wanted to put a port in and couldn't because it would clot off.

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tomcat over a year ago

Polycythemia Vera has conrolled my life until I took my life back.While docs give me little hope of this condition, I discovered that the disorder can came from from giving blood. That is when I started to think positive and dicovered that phlobotomy was not in my best intrest.Read that running helps due the red blood cells being smashed at feet which conroll blood cell count.Have not given blood in a year and yet my red blood cell count numbers are almost normal. Gaining weight and feeling better.REasearch and stay positive for the medical field still has a while to go with complicated illness.Say strong and never lose faith. Godspeed.

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Guest over a year ago

Hi Laura I was diagnosed with PV a few years ago and it appears that the worst symptom to deal with is systemic body itching. Have you had any experience in how to deal with it Docs have been no help

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Guest over a year ago

Thank you for posting this. I have had PV for 8 yrs and I'm 55 yrs old. I do phlebotomy every two months. Makes me feel better that there is some hope. Also Ice Tea (Black Tea) helps deplete the iron. And of course watching your iron intake. My blood work has been good as far as RBC, but the liver enzymes are high. Have any suggestions.

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Guest over a year ago

Is this page still active? My daughter may have PV and we are waiting to see hematologist and of course I'm worried. I have read it's extremely rare in children, but she has high hemoglobin/ferritin/hematocrit and it was stable above max limits for normal and recently started increasing and for over a year no Dr can figure out a possible cause. We keep her on low iron diet...if it's not PV I'm curious if anyone here would have any ideas why else her levels are high?

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Guest over a year ago

Hi. Not sure of any other reason why your daughter may have been diagnosed. It is true that usually elderly people are diagnosed with polycythemia Vera, but my husband was diagnosed with it at age of 26, he is now 28. It came as a shock to him and many doctors as well but he is being treated regularly and living a regular life. Best wishes.

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Guest over a year ago

Can you tell me the name of the drug that your loved one is using? I have had polycythemia vera for over 12 years. I take hydrea, 1000 milligrams and day. My head hurts a lot, feels FULL.

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zneufeld over a year ago

I'm 30 and I was diagnosed at 16 with PCV with the JAK2 mutation. Been doing phleb once every 2 or 3 months since then. Each of my doctors has said I can have a relatively normal life expectancy, barring any complications. So essentially I have a higher risk of early death, but it's not certain. Perhaps treatments will progress enough by the time I'm middle aged so that I can make it past 70! I don't know if anyone has lived with PCV for 40+ years. Most stats I've heard are 20-30 years past diagnosis, but I don't know if that includes people diagnosed at a very young age. It is exceptionally rare to be diagnosed as a teenager.

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Guest over a year ago

I´m 61 years old and diagnosed 2010 with Polycythemia Rubra Vera.
My Hematocrit was 69 and I had 16 flebothomies of 0,5 L in my first 8 weeks after diagnose.
I am now on Pegasys(Interferon) and can recomend that if you can stand and afford it.
Interferon might be a cure, it can get rid of the JAK2 mutation in some patients.

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Guest over a year ago

Hi all was diagnosed with pv about a week ago I'm 43 yrs old and know nothing about it so trying to find out all the ifo i can on it started doing the blood removal once a week so far

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Guest over a year ago

Yes Jim. I was diagnosed at 41. Have been on Hydrea for 16 years. I have the more serious one, polycythemia rubra Vera. I could not continue to work. I could not get long term disability from my job either because there is no termination date for a chronic cancer. I struggle on Social Assistance Disability. I know I am feeling a lot worse now than I was when first diagnosed, but refuse to give up. Will keep up with the Phlebotomies, aspirin regiments and chemotherapy as long as I have to.

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Guest over a year ago

Susan - could you comment on what he DOES eat? Does he get protein from dairy. Would you offer a typical daily meal plan?

Thank you!

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Guest over a year ago

My Grandfather was the third diagnosed case of polycythemia vera in the United States he was born August 18, 1870 died on his birthday August 18 1037 at the age of 67 I currently am 67 years old myself my family had one member with polycythemia vera diagnosed in 1960 it was my grandfathers fifth child we do not have any known members of our family currently with this disease very interested in this disease as I also am a registered nurse

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