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Polycythemia Vera and Nutritional Ketosis
I was diagnosed with Polycythemia Vera several years ago and my treatment regiment has been regular phlebotomies (generally about every four weeks.) I needed to drop some weight so I started a diet plan that would put me in nutritional ketosis. I do not know if the two are related, but I was able to go five months without a phlebotomy. It may just be a coincidence, where I might be stabilizing after the first few years, but I just wanted to pass this along in case it sparked any thoughts from others.
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I am 58, female and have had PV for four years - diagnosed December 2021 with JAK2 positive for mutation. It was discovered after doing my yearly routine bloodwork. I also had unexplained symptoms for about two years like red nose/face/hands and toes, especially in summer with the heat. Right before my diagnosis I remember that my bone pain and fatigue got really bad to where I could barely get out of bed.
I’ve worked in clinical research for decades and have heard of many blood cancers, but not PV, probably because it’s so rare. It was a complete shock… I had been under a lot of stress (pandemic lockdowns/both husband and I were laid off at same time, etc.) He had very worrying mood disorders, and his alcoholism blew up along with his mental health at this time and I was seeking separation after 20 yrs of marriage. I think for me stress might have played a role in this cancer due to the fact that chronic stress causes inflammation. And PV is extremely inflammatory.
I have been seeing an MPN specialist and initially did only periodic phlebs but these didn’t help my platelet count - eventually made it worse. Decided to go on ropeginterferon (Besremi) I refused the oral chemo like hydrea, and after taking low dose Besremi for 2 yrs all of my numbers are normal. No phlebs needed. I am hoping it stays this way and that I’m on my way to remission.
I eat very healthy, and have always exercised. I don’t smoke and I’m a healthy weight with no other health issues. I think diet can play a role in helping symptoms of this disease (such as eating an anti-inflammatory diet/Mediterranean diet, etc.) which I follow closely, but I also think targeting the bone marrow to stop disease progression like Besremi does, is what is really working, at least in my case.
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They say it's permanent, but then they can't tell you how it happened in the first place! My theory is that there is a DNA switch and it changed, why couldn't it change back? The problem is figuring out how to do it.
@storm16
Good information. You would think with carnivore the iron would cause RBCs to increase a lot. I have read that low carb diets help most people. I don't think big pharma cares much about PV though. There are very few medicines available for PV. The best one out, Besremi, is only for the elites or those with insurance companies that care about their customers. But if we can get by with diets, much better!
@jackiecarey
PV happens out of nowhere. I've read it usually happens to men in the 70s and 80s. I received this a few year ago at 46. There are some medicines for younger patients, but getting insurance to cover them is a whole other issue.
@lindaw123
It's hard to say. I too was diagnosed after doing Keto/Carnivore for 5 months before. I think my backpain was the final straw that caused my doctor to get a routine CBC. I also felt like I was dehydrated. Could be coincidence or just some humans have certain genetics.
Welcome to Connect, @denvirg It looks like you and your doctor have found the sweet spot with your medication to keep your blood levels fairly normal and you comfortable. I’m sure you’re happy without those monthly phlebotomies!
Diet can have some impact on blood cell production and in your case you’re trying not to add to your red cell production with foods that increase your iron. I found several articles for you but this one from verywellhealth.com does a good job summarizing which foods to eat, which to avoid:
https://www.verywellhealth.com/polycythemia-vera-diet-5204993
How was your PV discovered? Was this through routine blood work or were you having symptoms at the time?
I am new to this, so all I will do at this point is explain my case, and ask questions on what is working for others with PV, as to their diet; rights and wrongs.
I am 83 years old and I've had PV for about 12 years. I take 2 Hydroxyurea 4 days a week, and 3 of same 3 days per week. I also take Hydroxyzine, a histamine for the itching and occasional sleep aid. I use this very sparingly, as I'm not a very pill user. That said...it does work well. My Phlebotomies have decreased from a pint a month, to once every 2-3 months, but I do a CBC every moth to check the Hematocrit level.
I am wondering if there are any suggestions for diet; items I should and shouldn't eat.
Dear Gabby, you are very frustrated! I just turned 77 and was diagnosed with PV 5 years ago after having a minor operation where my blood work showed a high PLT count. I refused to take the prescribed Hydroxyurea (I call it the Poison Pill) for 2.5 years until fatigue was interfering with my life. Now, 2.5 years later I am mostly fine, no major side effects from the PP (1000 mg a day) and much better than most people who have PV. I attribute this to my healthy diet and the 14 - 16 vitamins and supplements I take every day. Try to stay positive and investigate fueling your body with healthy and nutritional food, and if you do have PV, try some prescription drugs.
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3 ReactionsI’m at a loss after being told by my dermatologist she believes I have PV. I go to the cancer clinic in a week. I retired at 60 because I could feel life being sucked out of me since around 57. After constantly seeing my PA for fatigue she increased my thyroid medication. My indigestion and choking was getting worse so my stomach doctor stretched my esophagus and increased my medication. He also diagnosed me with hemochromatosis!! Donate blood and avoid iron products. Now TG 2024 I felt like death warmed over! I struggled to breathe, trouble eating and the uncontrollable itching! So off to my PA. Hum, no clue. Pump me full of steroids. OMG!! I started breaking out and clawing my skin. No sleep. Uncontrollable sweating day and night. I could barely bathe myself. January 2025, I see my dermatologist she prescribes more oral steroids, skin and hair steroid products, too. Eventually it somewhat clears up by symptoms still there. She had also taken a skin scraping and biopsy. My return appointment she started treating me for scabies although the tests were not positive and she took a lot of blood to send off. My final visit was when I received my blood work and was told she believed me to have PV!! I had been begging and pleading with my PA for years to research further. I saw another doctor only to be told it was menopause. Seen a gynecologist and put on a very mild dose of hormones. No help. Told it was my age. Stayed teed off because I was always extremely active yet I had the itching, nose bleeds and feeling of fullness for years!! I’ve dealt with fibromyalgia and even had histoplasmosis. It took an eye doctor to tell me that when I was trying to get over uhm bronchitis 😳Some azz of a doctor told me I was a medical mystery!! This may not post because of the length I know it’s long just get so aggravated because doctors won’t listen or seem to question years of changes in your bloodwork or voicing your concerns. Please let me know more about what you are dealing with and anything that helps you.
Have you thought about a second opinion? In my opinion, for what it's worth, a PV specialist in San academic institution is what works for me. 49.9 hemoglobin seems a bit high.
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