jak 2

Hi macas02. If he didn't test positive for the jak2 gene mutation as I did he will probably be diagnosed with secondary PV. Usually that can be caused by a tumor, smoking, or something environmental. I was diagnosed around 2011 so that was about 7 yrs ago now. I am now 76. So far, I have lived a normal life. I sometimes get overheated from cleaning house, or just become hot for no reason. I also get tired sometimes and take a nap. However, considering my age, that  is fairly normal. I have been on Hydroxyurea the whole time, and so far, haven't had to change the medication. I was also diagnosed with gout at the same time, but that could also be caused by the fact that I have rheumatoid arthritis which sometimes comes with gout. Hope your husband has as easy a time of it as I've had so far. Best wishes,

?harrishill

Here is the criteria from the World Healt Organization (WHO) to determine whether his increased red blood cell counts (polycythemia) are due to bone marrow overproliferation (which would be VERA), or as harris hill mentioned, due to other conditions in his body, which would be secondary. jak2 is only one of the possible mutations that causes/indicates "vera" but is the most common one.

Major diagnostic criteria for PV include:elevated Hb or Hct, or increased red cell mass,

bone marrow biopsy showing hypercellularity for age with trilineage growth, and

the presence of a JAK2V617F or JAK2 exon 12 mutationThe sole minor criterion is:subnormal serum erythropoietin level

Diagnosis of PV requires meeting either all 3 major criteria or the first 2 major criteria and the minor criterion.2*

Click on the table for a downloadable, printable diagnostic worksheet that may be used to help assess patients for PV according to the WHO Guidelines.

Here is the link:

http://www.jakafi.com/hcp/polycythemia-vera-diagnosis.aspx?utm_source=google&utm_medium=cpc&utm_campaign=G_ENG_Unbranded_HCP_Polycythemia-Vera&utm_content=G_PV-Diagnosis_E&utm_term=polycythemia+vera+criteria&gclid=Cj0KCQjw28_XBRDhARIsAEk21FjjTbBSeTgUv7eFyz8BKGvZQUpEi0-d8y3h8F5gjky_vBQ6mWBi8kgaAvsJEALw_wcB&gclsrc=aw.ds

If his polycythemia is secondary then they will diagnose and treat the symptom that is causing the overproliferation and can cure the condition, if primary (vera) it is a chronic condition that can be controlled and treated but does not go away.

Hope this helps, best of luck to your husband.

One more thing, Polycythemia Vera (PV) is very rare, hence many hemotologists and oncologists don't know a lot about it, so if you feel you are not getting the answers you need, you may need to consult an MPN specialist (MPN is a category of conditions, of which PV is one).

The diagnosis for your husband appears to be very mild.   As he has not apparently been affected by the JAK2 mutation this should augur well.   Do not be over-concerned at the results of the tests as these are an early indication  of what faces the doctors.   Early stage Polycythemia is very treatable and may even be cured, depending on the outcome of the tests to be undertaken and the possible causes of the complaint being revealed. Some of these have already been pointed out to you by others on this forum.   Remain calm and optimistic.

Best wishes.

Peter.