← Return to Polycythemia Vera or Essential Thrombocythemia ?

Discussion
Comment receiving replies
@nypara66

Wow that is an extremely high amount to start on but I can only assume it was to get her platelets out of that very high danger zone and avoid throwing a clot. Pretty sure she will go to one a day and monitor for about two months. I began with platelets just over 800 and 500 mg daily. After one month went down to 200. Went to 5X a week and after about 7 months got the dosage straight on 3X a week. I’m holding steady for almost a year on this dosage. My platelets are about 480 and my oncologist is fine as long as I stay under 600. High doses gave me some nasty side effects such as hair loss, swollen gums, extreme sensitivity to sun and small brown spots on my skin. I’m hoping I can hold steady on this dosage. I am JAK2 positive and have Polycythemia Vera, diagnosed 1/23.

Jump to this post


Replies to "Wow that is an extremely high amount to start on but I can only assume it..."

Can someone please tell me the difference between PV & ET? Different symptoms? Can one turn into the other?

I was diagnosed with ET about 6 months ago since my platelet count was high & I have the JAK2 mutation. Never had a biopsy. HU (500once a day), with no side effects, has brought my platelet level to the normal level. I'm new to this & need to learn more. Many thanks for all these very informative posts & helpful posts..