Just joining chat group: I was diagnosed with... - MPN Voice

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follies
follies

I was diagnosed with Polycythemia Vera last week after lots and lots of blood tests and a CT scan. Fortunately, no enlarged spleen or problems with any of my internal organs. Am eager to learn more from those who have had this for a while and how it, or if it, has altered your quality of life. My husband and I like to travel and I'm not sure how often I need phlebotomies. Talked to my sister's friend who has had PV for a decade or more and he goes in around 4 times/year. I have my 1st one next week and found that some people have them as often as 1/week or 1/month. Ouch.

Thanks in advance for your guidance

9 Replies
oldestnewest

Hi! Welcome to the forum. :) Glad to hear you’re not experiencing any major organ funk.

It sounds like everyone’s experience with a phlebotomy frequency is dictated by their doctor’s beliefs and their response to any meds they may be on.

Mine, for instance, had me do them monthly when I visited because my HCT was above 45 and I was symptomatic (itching, blurred peripheral vision, headaches). I was high in RBCs, WBCs, and platelets. He thought I should start meds despite my age (32) because the symptoms were affecting my daily life.

Once Pegasys (90 mcg 1x/week) started showing results (48 -> 39.9 HCT) and those symptoms lifted, we stopped the phlebotomies. Now I just check in once a quarter. I hope it goes well for you too! I always felt awkward going to the blood bank and not actually being able to donate what they took. :\

follies
follies
in reply to lynxfluff

Thanks. Just the beginning of my journey. Helps to have direction and information.

Hi follies,

I was diagnosed with PV 13 years ago, I originally had phlebotomies every 12 weeks. 6 years ago at the age of 59 I started Hydroxy as my platelets were becoming quite high. I now only have a phlebotomy about once per year when my hct goes over .45. Quarterly checks with the heam. I worked full time until 2 years ago and then decided to take early retirement. I now help with childcare for my grandchildren. My life has slowed down although PV has not stopped me doing anything I want to. When the fatigue kicks in, I rest. I still have holidays but I’ve not done any long haul flights since diagnosis although many have. I have an enlarged spleen but it causes no problems.

Learn all you can through trusted sites like mpnvoice.org.uk . You will be fine.

Best wishes

Judy

follies
follies
in reply to piggie50

Thanks. It is encouraging to learn more from those having this rare condition. On the advise of a friend, I went to National Organization for Rare Diseases (NORD) and found some useful reports from Mayo Clinic and other high profile organizations.

Many of the potential side effects of Hydroxyurea impact the stomach/intestinal track - one of my weakness. Have you experienced any side effects of this drug?

piggie50
piggie50
in reply to follies

No, I’ve had no side effects from the drug at all.

Mazcd
MazcdAdministrator

Hi Follies, welcome to our forum, you are in the right place for help and advice. I woudl urge you to read as much as you can on our website mpnvoice.org.uk, I am sure it will help you. Kind regards, Maz

Thanks, nice to have friends with benefits around the country and around the globe!!

Hello. My husband was diagnosed with PV aged 46. He lived well, despite the itch, for 28 years only needing venesection. As others have said, venesection was given when HCT was over 45. At first he needed weekly venesection but eventually much less frequently-sometimes a few months interval but in latter days about every six weeks until he didn’t need them at all due to it progressing to Myelofibrosis. Four years ago he progressed to post PV Myelofibrosis and is doing quite well, although he now has anaemia and can feel quite fatigued. You learn how to manage fatigue and it’s less problematic if retired! He’s been on Ruxolitinib for about a year and a half. His PV had no negative impact on everyday life or holidays. (except for needing time off work to see consultant/have venesection) He managed the itch with cooler showers and getting dried & dressed quickly. Hope this information is helpful and encouraging. Best wishes.

follies
follies
in reply to Joe500

Thanks for your feedback. I am making a list of questions for my doctor next time I see her based upon the helpful suggestions and experiences shared.

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