life expectancy for polycythemia vera

That's interesting, because my husband is 74, was diagnosed with it, At least 6 yrs ago, and eats meat everyday, and beans a lot! Loves beans! Makes sense to cut back on iron, but he hasn't had to give blood for MONTHS now! Don't even remember how long ago!! It's perfect, every time!

Hello,
I was diagnosed with PV in Feb 2016, although I suspect I've had it for years because of migraines. I'm 55.
Regarding the itching, it is one of the worst symptoms to me if this disease and I've tried several meds and lotions to no avail.
The only thing that has helped curb the itching is twice a weekly 10 minute sunbed sessions on the low intensity sunbed. This also raised my vitamin D levels which were very low.
Hope this helps someone!

The sunbed surprised me, because my itching is worse after a hot shower. The cooler the shower the better for me.

I'm the opposite. A shower hot, warm or cold makes me itch horribly. When the air hits my skin during and after taking a shower, it makes me itch. But, a hot bath does not...it has to be hot or very warm, not lukewarm.
Also, ANY lotion will cause my skin to itch.
Has anyone had any relief taking the Zyrtec/Zantec combo for itching?

Who is your doc if you don't mind sharing? I don't seem to be able to find one that understands this disease. I'm in Florida

Suddenly, at 45 my family doc told me I had high platelets (540-580). It was 12 years ago and I was feeling fine. Everybody though it was reactive. Reactive to what, I asked every time. I had a Parvovirus Viral infection in 2000 ( also known as 5th disease), and truly, I wasn't as good as I was before, but I overcame it and only delt with minor stuff because of it. For many years I was told a had Sjogrens as a result ot the infection so the new platelet count was believed to be in regards to that.
In December 2010 I gave in to the fear of the swine flu, and had the shot. Whole hell broke lose. Numbness, tingling, burning, ringing in the years, dizziness, balance problems, blurred vision, some night sweats, some small unexplained bruising, and then some. Twelve separate neurologists saw me, each had an opinion, treated me with IVIG that improved symptoms with periods of almost 90% relief. But it would come back again. 2013-2014 marked a serious change in my condition. The burden of symptoms was too much, I absolutely drove my family nuts! Husband's a doctor, and he was running out of ideas for me. The tips of my fingers hurt so much, I could no longer touch things without gloves on my hands. A large quantity of IVIG made it better, but I still use rubber gloves to wash my hair to this very day.
In 2016 I ended up in the emergency room for numbness on one side of face that was progressing. It happened while I was driving. I saw my family doc imeddiately, and he sent me to the hospital. I came out with a dx. of ET, and Jack 2 positive. So that was that. My symptoms finally made sense. Baby aspirin took care of the fingertips pain, and headaches. But I am still itchy with periods of relief, a sweat more and during daytime. And I have bone pain. Two BMBs at two different medical centers showed there was a chance it will progress to PV.
But my story is meant to be more about the other side. That of the doctors to whome I told it in the hope it would spark some scientific interest. How can a flu shot create this havoc, and how come the IVIG relived it for many years, and made my counts stay put? May some viral infections such as the Parvovirus trigger changes in the bone marrow and blood? I was amazed how little attention they paid to it, instead reciting what anybody can read anywhere on the medical webs about standard treatment and progression of the disease. I too, like many of you here, keep informed about my condition all the time, but I no longer hope that a cure will come anytime soon. For that, medical professionals that see us have to pay attention to the stories we tell, and pass them to the research.
IVIG is an immunotherapy given in some cases (mine was mistekanly believed to be neurological), but not in any hematology condition that I know. It was given to me by default, and the improvement was unbelievable. I am no longer on it and my counts are suffering. Can it be that in the cases where people experience heavy symptomatology, this kind of treatment can be an option? one that carries a lesser risk than the meds we are prescribed routinely?
My intention was to challenge you to think hard about what happened one to five years before you either no longer felt as good as before or were diagnosed with PV. Did any of you were sick with a bug, virus, and do you happen to know what kind? By sharing our stories previous to the disease itself, as many stories as we can find, we may contribute, even if in a small way, to the decoding of this allusive disease.
Sorry for the long post.

What part of Florida?

I had Osteomyelitis 5 years ago! My platelets were high then though.
Was diagnosed with PV last year.

I am 73 and was just diagnosed . Blood counts have been going up every year and now are high. I've had some of the physical symptoms for a year but didn't know. Haven't started any treatments yet. See the hematologist next week. I'm scared because I am older. Any advice ?

Try taking Milk Thistle for your liver enzymes . You buy itbat a health food store.. mine became remarkably better

Patty, don't worry until you have something concret to worry about. I have friends with PV who are older than you. I'm 65, diagnosed four years ago. They say that we older PVs shouldn't worry. Something else will us before PV runs its course. Eat healthy, drink lots of clean water, move around enough to call it exercise, and don't worry.

I have just been diagnosed with PV in the last two weeks. I had influenza A in February 2017 and the flu shot in April 2017. 4 weeks ago I got Influenza A again and the dizziness and fatigue I have had on and off since February has hit hard and fast when I got the flu the second time. It was due to me bleating to my doctor about dizziness, chest pain and lethargy being worse than the chest and sinus infections that made her start looking at my blood count. I'm wondering if the flu virus or immunisation triggered this.

What diet? What's a port? I was diagnosed with PV July 24/17. Come from a very small town, Almost 70 tries for a phlebotomy with no luck.

I am 71 and was just diagnosed this spring. I have no real symptoms other than having days where I am bone weary, but then a good day comes along and I have lots of energy. I have just decided to go with the flow and when I feel tired, I will rest. Normally I think I am in good shape for my age, not over weight, eat well, I like to have a glass or two of wine, but I "try" to keep that in moderation. I know it says no alcohol, but come so far it seems okay. I have had a bad summer with other things affecting my health.so i have not been as diligent with exercising. But normally I walk 7 km a day or cycle 20 kms a day. I went through a regime at the beginning of 1000 milligrams of Hydroxy and weekly phlebotomy for a few months, then I was off of the Hydroxy and no phlebotomy for the past few months. With bi-monthly blood tests. Now I am back on the Hydroxy, 500 mg a day....and no more blood tests for 3 months. The oncologist says my bone marrow is very receptive to the Hydroxy and he feels it will keep it under control. Hoping he is right, we are snowbirds and will be in Mexico for the winter. He told me to get a blood test in three months and to email it to him so he can make sure I don't need to up my dose. So far I am happy with him and what is happening, just began doing some research and reading what other people are going through. It sounds like I am lucky so far with none of the itching, headaches or other. I have days I am very tired, but the next day I am okay. I rest when I am tired and just go with the flow. He told me that I have the same life expectancy that anyone my age does....what does that mean??? lol

My father is diagnosed with pv along with sinusitis gout nd all he is just in 50s..what should i do.....??