JAK 2 mutation
does anyone else have this mutation
My 55 year old son and myself both have A- blood and genetic testing showed us both with Jak2 gene mutation. So far he is diagnosed with thrombocychemia but I was diagnosed in 2021 with polycythemia Vera. His platelets are high but he is tested regularly and is on no medication yet. My platelets, red cells and hematocrit stay high. I take Hydrea daily and it keeps the platelets normal. I go for phlebotomy therapy bi-monthly and usually have a pint removed.
My symptoms are mainly fatigue due to low ferritin level, nausea and stomach fullness due to enlarged spleen. Doc increased iron tablet from 1 weekly to 2 weekly and I have a bit more energy, but my last 2 phlebotomy therapies showed hematocrit over 50, which it's usually just at or above 45. Catch 22.
I hate the nausea. I get sick if I overheat.I was diagnosed with essential thrombocytosis Jak2 in 2015. I was able to trace it back to 2011. I take hydroxyeuria 500 mg 1x per day.
We do have a few articles on that if you'd like to check it out, or at least find a place to start: https://blood-cancer.com/stories/essential-thrombocythemia It can help someitmes to read about what others are feeling and doing. Also let us know if there's anything else we can do to help from here! Keep on keepin' on, DPM I take the same and it keeps my platelets at a normal level. I also have polycythemia Vera so have phlebotomy therapy every 2 months.
