Polycythemia Vera and Nutritional Ketosis

I am not taking Hydrea -- at this time I'm just doing regular phlebotomies when my hematocrit reaches a certain target.

Hello! I am a 50 year old male and have polycythemia vera. I’m considering trying a ketogenic diet and hoping it helps with my disorder. I’m wondering if you were taking Hydrea to treat your condition? If so, were you able to stop taking it?

The phlebotomy does sound rough. I was born with a genetic bleeding disorder called Hemophilia. As a result, I have to give myself injections of clotting factor in my veins three times a week, so I am familiar with needles, veins, and the difficulties that can come with it!

I'd like to invite some members from a conversation that took place some time ago, @bg207, @rgreen1, and @sdahl.

@chadknudson, it is also great to hear that your oncologist is in the loop and on board with your diet change, I'm curious to see what she says about the results you are experiencing!

I definitely consulted with my oncologist before embarking on this plan. She felt that it would have a strong positive impact on my general overall health that it was worth trying provided that I agree to regular monitoring of my blood throughout the process.

I certainly don't let it define who I am, rather it's just something that I have. There are many worse things by which one could be afflicted, for sure!

The first phlebotomy was rough, multiple techs poking multiple needles in both of my arms and they just couldn't get any blood to flow. I had to come back in a few days later and had to have it suctioned out with syringes. After that though they were much better.

Hello @chadknudson, and welcome to Connect. If you don't mind me asking, did you consult with your provider about changing your diet? I am not an expert, but I have heard mixed reviews about a keto diet. That is great news that you were able to go five months without a phlebotomy, whether it was your diet or your disease stabalizing. While we wait for others to join the conversation, if you are comfortable, how are you feeling with diagnosis overall?