Athletes with polycythemia vera

Hello. I am from denmark. Not so good at english. I have PV. Diagnozed In februar 21. I was In good cycling form In 2020. Ftp at 310. Now 260.But with at hæmotokrit at 52. Now 42. And on pegasys medicin. I have problems with pain i my legs and no motivation and Are getting tired after 50 km . Are there Any good help or is that just the way it is. Best regeres Leon

Hi there, I’m happy to find this (old) thread as I have been dealing with pv for the last 22 month and find myself fighting motivation, joy etc. since the many phlebotomies rubbed me of my hard earned endurance. The way I see it my main challenge is not going from a hematocrit level of 69 to the low forties, but the depletion of iron and hemoglobin, which really takes a toll on my ability to transport oxygen. I have spend the whole year (2022 was all about phlebotomy) testing larger and larger doses of pegasys, and for. the last three month, being on 180 mikrograms a week, it starts to work. Or at least I went from phlebotomy every three weeks to 1 in three month. But I still lack iron so I tested a tiny supplementation for a week, and, well, power came back to my legs, but at the same time my hematocrit exploded :frowning: My coach suggested if I could experiment with microdoses of iron. Have any of you tried it? And specifically to you, Leon from Denmatk, feel free to reach out as I live here myself. You will find my contacts by simply googling my name or adding a .dk to it to access my website. Regards Martin