Recently diagnosed with Polycythemia Vera

I have had PV about 5yrs. now coming out of a couple of different cancers.

I have a specialist who knows about PV and I started with phlebotomies

since my PV (HCT was in the high 50;s).  This helped get the HCT (the governing

component) to determine the Care needed for treatment of PV.

You did not mention if you are under doctor's care or on meds. or having phlebotomies or any other illnesses.  One cannot answer you concerns when you are so vague.  Good Luck !!

l was only 30 when diagnosed with PRV. Have had the standard (roughly 3 monthly phlebotomies) and a daily aspirin over 25 years.

Without knowing in the details of your condition the only advice l can offer is to keep your condition regularly monitored, perhaps taking anti DVT precautions when flying long distances. Apart from that live a normal happy and fulfilled life. l plan on being around another 25 years at least and feel as good now as l did when l was 40!

I was diagnosed 30yr ago, I am almost 60 now, though when I learned of the symptoms I realised I have had this disease all of my life. It explained missing school or not being able to hold down a job. A lot of the symptoms I recognised as far back as young as 3yr old. I take aspirin and hydrea and despite my bloods being near normal ( though creeping up slowly) I still need blood off from time to time. I still get the symptoms associated with the disease restless leg syndrome is particularly bad due to a lack of iron. For restless leg I take quinine and ropinrole, which helps a good bit. I did have to give up drink a smoking, though it's not the end of the world. You can Google the symptoms to see if any or all of them are familiar to you. Don't let it stress you . Just stick to the rules look after your self and you can have a long life depite the negative diagnosis. Any thing specific and the good folk on here will answer your question. Be well.

Paolo, you are unfortunate to have PV so early in life, but this is not unusual in itself.  Providing you look after yourself, both physically and mentally you should enjoy life.  I have lived with PV for many years and am still fairly upbeat about things.  It would be easy to give you mounds of information but it is not really necessary.  There are some very good web-sites that deal with PV from all angles so learn from these rather than be bombarded with too much detail.  Most sufferers are affected differenly so much of what may be given in good faith, might not be relevant to your situation.  You have been diagnosed so keep in touch with your doctor and if necessary, the haematologist at your local hospital.  You will find them informative and helpful in dealing with your difficulty.  So far, PV has remained incureable but there have in recent times been some gtreat advances in understanding and treating it.  Just live your life as you would and be sensible in keeping yourself healthy and fit.  My experience is that you can live around PV without it affecting you . If ever you become concerned do not hesitate to see a professional medic  and discuss it with them.  It is a rare disorder of the blood which can be medically controlled and you are better off with professional help from the outset.  Good luck for the future.

Hi Paolo, PV affects your life in that you will need to see a Haematologist regularly, and get phlebotomies at first, then will be put on medication such as Hydroxyurea. However, you can lead a normal life. It can turn to cancer, but I now some who've had it for 20 yrs, and haven't got cancer. I exercise, do yard work, etc, and have lots of energy. Sometimes I need a nap, but I am 74 yrs old now. Have had PV diagnosis for 4 yrs. Just take your meds as told, and have faith. It's not as bad as some other illnesses.

Thanks everyone for your kind response, I just dont understand why i got this disease I dont have vices like smoking or drinking, since there has no cure for this I know my last option is deal with it, but Im always tired, I am still working but every morning I just want to sleep and rest what I mean is I am discouraged to do normal things right now, i feel drained and have no energy to do anything, but despite of that I still go to work, I plan to quite job but I cant it is only my source of income. I start working out on a gym, do you think it might help me to regain energy? Im sorry if my words are a little bit confusing. Im not good in english. btw Thanks.

-Paolo