Diagnosed with PV, with high hematocrit and platelets in February 2026. Currently on 1000 mg HU 4 days and 500 mg 3 days a week.
My oncologist only told me most people tolerate HU well. That’s it!!
Read up on the side effects and got tips thru this site. No issues with blood, sweat or sex with hubby. What works for me is taking HU after dinner. Full stomach - no nausea, and if I get fatigued, hey, it’s at the end of the day and going to bed soon anyway 😊
HU did give me mouth and lip sores/ulcers at first. Learned from others to make sure mouth is moist - I have a small amount of water in my mouth before throwing in the pills, followed by a lot of water to wash them down. I pour the pills I need from the bottle onto the bottle cap and then toss them into my mouth from the cap. That way I never touch the pills.
No more mouth sores! However I did get a nasty lip ulcer. I figured sometimes when throwing the pills to my mouth the pills brushed my lips. My solution is to smear my lips with lip balm/chapstick before taking the pills to coat and protect the lips. No more problems.
Good luck to you on this journey. Everyone is different, but this works for me. Side effects of the HU are minimal compared to how bad I felt before treatment. Not to mention being at high risk for strokes, clots and heart attacks if untreated.