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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@chadknudson

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).

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Replies to "I've had PV for three years and do phlebotomies generally about once a month. In discussion..."

Thanks Chad, my threshold is 45 as well. I maintain a very healthy diet as well. I am very fortunate to have a wife that is a RN and yes she stays on my A$$ daily about my intake and exercise. I try to do everything as right as I can but nothing seems to work. There has been a lot of talk with my Drs about starting the Hydroxyurea and I am fine with that. I am just getting a little tired of the wait and see approach as well as all the phlebotomies. I guess I'm also looking for other avenues of therapy. The last thing I want is to throw another clot.

Hi this post is almost 3 years old do you have any updates? I found out I have pv this year and feel my story is close to yours aside me trying the Keto diet. Tia

Do people generally feel their symptoms improve/feel better after a phlebotomy?

Hello, I read you do your phlebotomies about once a month? Are you taking Hydroxyurea also? I currently am and it does lower my platelets substantially. I also noticed that after a phlebotomy, my platelets seem to drop about 100 pts? My doctor has the same expectations, Hematocrit at 45 and platelets below 600. I’m newly diagnosed and they are still trying to figure out dosage etc.