Pannej

Hello and welcome to the group.

You will get a lot of support here. I'm also Jak-2 positiv, have had the dx for only 6 months. I'm on Hydrox since my insurance won't pay for Jakafi (my haematologist's first choice). From his stand point, Hydrox works only on the symptoms and not on repairing the illness. He thinks that Jakafi being more specific,  it might help increase life's expectancy. You are right, when a dr tells us, you could live healthy until 70 yo, at 20, it sounds very old, but when you are 52 (like me) or 62, it's tomorrow...

You might talk to your dr about Jakafi, who knows, it could make a difference.

Marie

Hello Pannej,

Good to see that you are coping well with PV and that your consultant is doing a fine job for you.  As I see it there is no reason for you not to have a more normal life span as when one is diagnosed later in life the life expectancy should increase.  Be aware that PV can advance to other similar illnesses but with a good specialist this should be well controlled.  Some patients seem to get by with Hydroxycarbamide very well whilst others are more affected by side issues.  Such is the nature of PV which is one of a group of this type of illness under the banner of MPN's.  Clopidogrel is little more than a sophisticated aspirin which will thin the blood.  It is mostly used by surgeons on patients following surgery.  I was a participant in the research trial for this drug some years ago now.  If you notice any odd symptoms in the future do notify your consultant if you feel unsure about them.  Good luck for the future.

Peter.

Hi. Pannej. It seams that I'm the oldest in the goup. 81 young! As I mentioned before I was diagnosed about a year ago with ET and Jak2. 6 months before i had a blood clot on my lungs. 5 days in the hospital my platlets were under 400 I was put on xarelto and 4 months later my platlets went up to 700. A bone marrow aspiration confirmed that I have ET and Jak2 .My hemotolagist put me on hybroxyurea . Started with 500mg per day and now up to 16 per week.Although my platlets are now under 450, as I encresed the dosage,i compleetly lost the taste for food.My hemotalagist tell me that the hydroxyurea is not the cause.I'm going to ask him if i could decrease my dosage.Oh! by the way as i understand having ET and taking hydroxyurea,does not decease life expectancy. But at 81, i probably do'nt have  much more time. But I have to think positive. I take 2.5mg of eliquis twice a day (could not tolerate Xarelto) (Muscle legg pain). 81mg of aspirin and 2 - 500mg hydxy per day and 2 extra per week. I have no side effects. I still walk 2 miles per day.If i could only started tasting food again,I would be happy as a camper.Good luck to all

?Sorry for my spelling. For some reason, spell check does not work on this web site.

?Luts of luck to all.

Hello, I was diagnosed with PV 2015, they found it from investigating a lg bloodclot in my portal vein. Yes positive Jak etc. Regular blood dumps 520ml on high dose warfarin. Enough on me. I work in the health industri and was amazed to do an assessment on a 90 year old man with PV as well. There is hope for us all.

Pannej,

I think you will find that PV sufferers die of many things but I have only come accross one person who may have died of undiagnosed PV.  This puts you on the correct side of the fence.

As far as I know there is only one cure for PV and that is to kill the bone marrow completely and introduce bone marrow stem cells from a JAK2 negative donor. Easier said than done and the risk from infection during the recovery period of two or more years makes the treatment very scary.  If you have a large fortune in need of spending then this is an option for you.  I therefore think that some degree of side effects from chemotherapy is a cost well worth paying.

ItchyChris