Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Thank you Lori for answering that question. I was given the Chemocare.com data sheet on Hydroxyurea by my hematologist. Eileen

BMB under sedation? Peace of cake! I don’t remember a thing. The worst was when they started my IV

What is your diagnosis? I was diagnosed in January With PV I started out with my platelets at 777 and was given 500mg of HU daily. Usually that is what most people I have seen on here start with. I would call and ask. I haven’t been fatigued from the meds but it takes time to adjust. I am getting brown spots on my skin and my gums were very tender but that has gone away after two months. They say the meds brings out old sun damage and it’s just cosmetic but I’m not happy about the spots. I guess if I keep living that’s minimal lol Good luck!

I too take Hydrea 500mg. I know it makes me tired . fortunately i'm retired so I can sleep late. I did tell my doctor he said i was tired due to my age. Im not accepting that answer why wasn't I tired before I took the Hydrea.

I’ve been on HU going on two years. Right now I’m taking 500 mg 4x/week. I’m not really noticing any bad reactions to it so far. My doctor adjusts the dosage based on hemoglobin count and platelet levels. If either goes too high for a couple of months ( I get a CBC monthly) he either adjusts the dosage or schedules a phlebotomy. I’m only doing those every 4 or 5 months now, was every two weeks when I first started. So I’m thinking that the HU is pretty effective. Only issue I ever had was after I had dropped a HU capsule in my water glass and left it there awhile before taking it. Had major itching for a day following that.

@kalamar111 I am tired all the time!! Wake up tired, take naps daily.

@november2025

ET itself makes us tried. Overproducing platelets, our blood marrow uses up lots of energy.

PV JAK2 positive. I have tingling/stinging in my Hands and feet and at times I feel my shin bones burning. So odd right?! Itching for me is minimal so I’m happy about that. Headaches when numbers rise but after phlebotomies, they go away. Currently taking HU 5X a week with baby aspirin. Phlebotomies about every ten weeks. I’m almost three years since diagnosis.

My platelet level is the same as yours with JAK2. I take a baby aspirin. So far, so good...no symptoms or side effects at all. Knock on wood.