After reading my response I realized I left out the part that is probably the most important to me, the predictability of it. When I was getting phlebotomies I would feel better for a few days or even a week or two and then it was back downhill again. Traveling was not as enjoyable because we were always dealing with the phlebotomy issue.
As far as the placebo, as far as I know, everyone is started on the drug and somewhere down the line you get a placebo for a month (maybe a year in?). I knew immediately because the shot didn't burn. After 4 weeks I was put back on the drug. I travel about 8 hours to MD Anderson. For the first year or so it is monthly, I am now on every other month.

That is so encouraging Cathy! The closest site is about 5 hours from me, so seemed a long ways, and I might only get the placebo. Your positive response is encouraging me to see if I can figure out a way to accomplish this.
I sure appreciate your time and candor in providing such a detailed explanation. There is so much that patients can share that is below the radar with most doctors.
Wishing you continuing success with your journey!

I feel almost normal. Better than I did before. No lowered resistance to diseases. I have a pretty aggressive PV and I am on one of the higher doses in the trial. My phlebotomies caused me to be anemic. The iron blocker stops my bone marrow from making too many red blood cells and keeps my HCT down. My hemoglobin is low but not as low as when I was getting phlebotomies. The shots are definitely worth it! When I first started the reaction site was about a week, now it is a few hours. I think you build a tolerance to it. Not everyone has the injection site issues as bad. If you do, it will get better over time. I get a 40 mg shot twice a week, so 80 total. I also feel best when my HCT is around 40. My doctor likes to keep it below 42 because I am a female. Males are 45. Above 42 my hips hurt and I have random migraines, random chest pain and bad night sweats.

Thanks again Cathy! You are such a wealth of helpful information.
Thank you, Christina

That's really interesting Cathy! How long is the site painful, like hours? Do you feel like it is a good tradeoff? How often do you get shots? Is there any idea if you would have to go back to such frequent phlebotomies if you stop the shots?
I get phlebotomies every two weeks. Anemia doesn't seem to suppress the blood cell production.
Have you noticed any tendency to get more colds or lowered resistance to diseases?
Thank you so much for sharing your experieces.