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 
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
Interesting exchange. I was diagnosed with PV last April. I’m 60. It was after regular checkups where my HCT was above 50. I got to this thread after searching for impact on PV treatment and sport capacity. I’m an active cyclist and XC skier. I feel that since I started my treatment I have lost about 20-30% capacity. Very frustrating however my friends are happy that I’m not on quasi IPO anymore. My treatments were a few phlebotomies (last one early July) at the start and I’m taking Hydroxy Urea 1000mg since July. Everything is under control since August. Now what I’m looking for is info on how to regain that aerobic capacity given my change in health. Any info or research on the matter I would be interested.
Hi Leon. We are actually the same age. And I started the PV-adjustment process with a lot of phlebotomies - over a 3 month periode - going from almost 60 in HCT to 43-44. And as you, my capacity dropped a lot and drastically . In addition i lost the interest in training for a few months. Gradually, when I accepted my situation and, together with my doctor agreed on a hct of 47 as an upper limit - my phlebotomies dropped to 3 or 4 every year - and I managed to get up to a nice level for cycling again - though not as high as before - but good enough for a veteran cyclist. And the level has been maintained there ever since. And when I started with pegasys for a few years ago - now adjusted to 180 microgram very 10 to 14 day - my phlebotomies has almost disappeared - and i have a stable HCT and a stable physical level - which I apply mostly for Zwift racing nowadays.
My message to you, is to find peace in the situation and discuss with your doctor what hct level is reasonable to maintain balancing both your desire for cycling and performing there and at the same time not risking your health.
Wish you all the best.
Sverre
Hi Benoit.
My experience is that, after stabilizing on my new HCT level (45 to 47 vs. 60!!) - I have managed to obtain back and maintain a ftp that is 5 to 10 % lower than before.
I would not be surprised if you can do the same.
BR
Sverre
Hi, my name is Onno and im diagnosed 4 years ago on PV. My age is now 63.years. energylevel are lower because of the PV but also permanent chemotherapy. HB value is around 8.1 which is low level of the rangen where it must be. Sports (cycling, hiking) are very important for me. Level of sports condition is half what it was before PV.