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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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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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1 ReactionAnd how are you doing now? I was diagnosed with PV about 7 months ago at 72– very similar story about problem eyes, looking at old test results, etc. I too never heard of PV, and I’m pretty medically savvy also. I’m thinking of MDAnderson for another opinion too. Currently phlebs and low-dose aspirin and many supplements to keep the clotting away. Might you share your experience at MDAnderson? It would be a long trip for me, but my life is worth it!
I have PV and been doing intermittent fasting for years.I'm 18/6 no snacking.. I'm so used t it that I'm never hungry or looking for food. This controls my weight, got off of BP meds and managed on hydrox 500 three times a week. I'm not advocating intermittent fasting for Alzheimers or PV but I know I'm healthier overall using intermittent fasting.
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2 ReactionsI have polycythemia Vera..Cancer is not new to me, I had breast cancer in 2009 with chemo and radiation, Just passed 15 years with no recurrence. I had bowel cancer in 2012 it has familial roots, was watching for it and got it before it left the bowel and only surgery was needed. Now PV, I had phlebotomies in the early days with hydroxurea then finally I'm controlled with hydroxurea. In the early days I had a terrible attitude, anger and maybe some depression..Finally I decided I'm my worst enemy, need to change my attitude after all, as stated earlier, there's far worse diagnosis's that people are dealing with and I'm reminded of that every time I walk into MDAnderson for appointments. I changed my attitude and I'm starting to feel like my old self again. I'm retired, joined the Nurses Honor Guard yesterday, eating well and living with a purpose instead of living the sick role, it's has changed my life.
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6 ReactionsHi. I also was diagnosed with polycythemia Vera JAK2. 2 years ago. I have never done nor plan to go on medication etc. I have been trying to keep my levels down. HCT. I have to have therapeutic phlebotomy also monthly. But I eat a Mediterranean diet and take a regimen of whole food supplements (. BY chiropractor)
A year ago I was doing a detox and for 21 days I guess I was doing keto (lots of veggies, fish. Salmon etc) low carb
My levels were fabulous
I also have hepatitis C which was from a transfusion long time ago. Never had any problems till recently it is now showing but when I did ketosis it went way down
Bottom Line I am going to try again to see if that may work in my favor as well.
Have your iron been low with all the phlebotomy? Mine has been but my last draw was normal. Yea.
Hope you respond and keep me up to date. Thank you for information that seems to be working for you
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1 ReactionHi @tennis7777, welcome to Connect. I’m not a medical professional but from my experience of having 3 acquired genetic mutations which caused my leukemia, once a gene has mutated they don’t reverse on their own.
There are medications/treatments which can help slow the proliferation of the damaged cells but they don’t reverse the mutation. Stem cell transplants and Car T therapies can be potential cures for patients.
Some mutations may be corrected through Genome editing, as indicated in this article:
>Genome editing to model and reverse a prevalent mutation associated with myeloproliferative neoplasms https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247858#:~:text=Here%20we%20develop%20“scarless”%20Cas9-based%20reagents%20to%20create,%28HSPCs%29%2C%20and%20immunophenotypic%20long-term%20hematopoietic%20stem%20cells%20%28LT-HSCs%29.
Have you been diagnosed with a blood condition because of a JAK2 V617F mutation?
Hello, does anyone know if DDR (DNA Damage Repair) can take place on the JAK2 V617F mutation? Or once it's mutated it is mutated forever?
Thanks
I was diagnosed with polysythema Vera a little over 10 years ago. My weight has went from 155 to where I'm at currently at 185. My phlebotomies started off at every 2 weeks, then it went to 4 weeks, 3 months, 6 months, one year. And this cycle has repeated no matter what my weight is. Currently it's been 9 months since my last phlebotomy and I am at my heaviest. I try to stay away from foods with high iron. And B12.