Hi Ted. Over two years since I was diagnosed, I am only on 10mg Xarelto. Had many venesections intitially but not for about 8 mths. RBC remains low normal, wbc now high. Have been advised to start HU 6 mths ago but since I feel fine apart from afternoon fatigue, I am not willing to start HU as it suppresses production of all cells.
For fatigue I have a 15 min nap and is refreshes me.
At nearly 73 yo I still workout hard at gym and am muscular as a result. Plus walking, and having positive attitude. Exercise is part of my life for over 40 yrs, but it’s almost never too late to start.
I have no other comorbs. Lucky me!
My advice? One day at a time, exercise, clean eating, positive attitude and a wonderful supportive wife. It won’t always be this good, I know, but for another couple of years it’ll do me fine!!!
I hope some others with PV will take something from my experience so far.
Cheers to all, Peter

I also was on the combination of HU and phlebotomies. Then phlebotomies-only. The adverse effects from the HU and from the phlebotomy-induced iron deficiency were worse than the PV symptoms. I switched to the interferons, Pegasys then Besremi. The IFNs have been easier to tolerate and much more effective for me. My quality of life is better than ever. My allele burden has reduced from 38% to 9% in only 18 months of a low dose of the IFNs. I wish I had switched to the IFNs sooner.

We are, of course, all different in how we respond to these treatments. It is worth noting the fatigue, nausea and headaches are well known adverse effects from HU and may not be related to the PV. Timing of the symptoms is sometimes the only way to know since the PV can also cause fatigue and heachaches.

It sounds like it is time to review your treatment options to see if there is something else that would suit you better. Hopefully you are already consulting with a MPN Specialist rather than a regular hematologist. Just in case, here are two lists.
https://mpnforum.com/list-hem./
https://www.pvreporter.com/mpn-specialists-canc...

I was diagnosed with PV in June, 2020. I used only aspirin and monthly phlebotomy for 2 years. I, too, am very iron deficient (fatigue, brain fog, lack of motivation, brittle nails, some itching, etc). I started on HU last summer, but it dropped my platelets very low, so we stopped it. I started back on HU at a lower dose (3x per week) about 5 weeks ago. It is slowly lowering numbers, but expect Dr will increase my dose a little. I hope the HU can help decrease the number of phlebotomies - maybe every two months??? And, I hope my iron can return to closer to normal. Iron is so important for various chemical reactions in your body. I wonder what all that deficiency is doing to my body?! I was told that the Besremi was not an option since I have an enlarged spleen. The next option would be Jakafi. Best wishes to you on your PV journey.

I've been there myself. I look forward to the day that I can say "life is amazing again!"

I was terrible on hydroxy , went for second opinion I started taking jakafi a month ago and life is amazing again , I was so iron deficient and fatigued I could barely function !