Polycythemia Vera: Just been diagnosed

Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?

How does everyone deal with the pain from your hands and feet. My fingers feel like they are burning, throbbing, cold, feel swollen etc. Nothing seems to work.

When you were on the Keto diet how often did you have to do the phlebotomy? I'm looking to reduce my time from once a month to further out. @chadknudson had success with this. What I have read is you should only be on a low carb diet for about 6 months.

I’m wondering who tried the keto diet and how it worked. I started keto a year and a half ago and then was just diagnosed with JAK2/PV in September. I felt great on keto, but after a year was so burnt out on it and have slowly started incorporating carbs/sugar back into my diet.

I’m wondering who tried the keto diet and how it worked. I started keto a year and a half ago and then was just diagnosed with JAK2/PV in September. I felt great on keto, but after a year was so burnt out on it and have slowly started incorporating carbs/sugar back into my diet.

I was also wondering if the vaccine may have attributed to my pv, but I’m not sure if research has been done, yet.

Good day, mate has just been diagnosed with PV, having Jak2 mutation. Have had phlebotomy - several to get into range. Now will start Hydrea. Interested in side effects and how long they occur. I'm sure there will be many questions to come but key ones I have are (1). if JAK2 inhibitor drug is used to stop production, is there any information that there is a possibility once the inhibitor is stopped, the high production of blood cells may stop as well? The reason I ask, is that I was getting severe migraines. I could not get rid of the pain. My doctor put me on a pain inhibitor as she thought maybe the pain transmitters were not 'shutting off'. After several days 10 - 14, I stopped taking the pain inhibitor drugs and the pain was gone. Thinking could this be the same with the JAK2 inhibitor drugs. (2). Are there any relations between blood disorders, like PV - high platelets, high hemoglobin and high red blood count being related to the Covid19 vaccines - specifically Pfizer? Thank you in advance for your comments.

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

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).