I am 59, male, oficially diagnosed with PV w/Jak2 November 2024. Phlebotomies every week until I got my hematocrit down from 68 to below 45. Then went to every 2 weeks then 3 weeks. In late March I was put on HU, 500 mg per day. in April/May (2025) acturally went 7 weeks w/o phlebotomy. Then it settled back to every 3 to 4 weeks. Upped the dosage to 500mg/1000mg every other day. Then to 1000mg every day, that made the phlebotomy remain consistant at every 4 weeks. November 2025 have now upped HU to 1000mg/1500mg every other day. Still consistantly crossing over 45 on the Hemotocrit about every 30 days.
Side effects: Hair has thinned a little, nothing major. No itching (I do put lotion on every morning). Brown spots come and go, Mayo had me do the whole dermatology exam to establish a baseline, when I was first put on HU. Have to be examined once per year they say. The spots appear for a few days on legs ( 4 so far) but then vanish. That only started in the last 2 months. I stay out of the sun as much as possible and keep arms and legs covered. It appears that PV really can effect people differently. If it wasn't for the incredibly annoying FATIGUE (yes, I cheat and drink 24 ounces, of coffee M-F (265 mg of caffiene) so I can get through the work day). My Hemotologist wants me to stay under 200 mg daily. Possibly a little bit of brain fog is creeping in, but I don't want to think about that being 3 to 5 years from retirement. Has made me more dependent on note taking and documentation at work.