Low platelets from hydroxyurea living with polycythemia vera?

I can only hope for this! I get phlebotomies about every 8-10 weeks but getting my platelets under control relies on how much Hydroxyurea I’m taking. Every time we increase it I get bad side effects like tooth and nerve pain and extreme sensitivity to sunlight. Hair loss too. It’s definitely a balancing game. I’m 3 years in with this disease and am grateful for this site.

Hi to you too. I also have the same diagnosis and would love my numbers coming back lower than they currently are too. I give blood every four weeks and am currently on 500mg of the same drug with sensitivity to sunlight also. Isn’t it crazy how same diagnosis can produce the platelets to reactive so differently…

I had been getting monthly blood tests for my Doctor to keep an eye on that. It was kind of like the “Whack a Mole “ game because he was also tracking other blood counts as well. He managed it by dosage adjustments and I stabilized at 4x/week at 500mg. I’m only getting blood tests every 90 days now.

@nypara66 thanks for sharing
My mom was doing phlebotomies every 2 mins as her hemotcrit kept going over 45. We increased the Meds slightly in sept 2025 - no phlebotomy since but now platelets dropped. So off meds for 7 days to see if platelets will increase

@djlom15 yes so quickly
In three months from 300, 110 and now 42. Off meds too see it will increase or if something else is happening
No symptoms of low platelets thon