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Supplements

A myMPNteam Member asked a question 💭
Austin, TX
October 25
 · 
Reactions
A myMPNteam Member

Because of my increasing fatigue with PV (I had my first iron infusion a month ago which hasn't caused a rebound in energy, as I had hoped). So, yesterday I purchased a bottle of B12 - 1000 mcg. Even though I will be asking my hematologist to add a serum B12 at the next visit in November, I thought I would jumpstart a return of my previous energy level. After all, at age 90, I had just done a skydive in August (2026) and climbed Machu Picchu two months before that). However, after consulting AI, the unopened bottle of B12 is being returned. Here is what I found:

Vitamin B12 and PV Fatigue
Adding a high-dose Vitamin B12 supplement (such as 1000 mcg) is generally not recommended or likely to help with fatigue in polycythemia vera unless a diagnosed deficiency is present. In fact, individuals with PV often naturally have elevated Vitamin B12 levels due to increased white blood cell turnover. Because unmonitored supplementation can be unnecessary or counterproductive, it is always best to check actual serum B12 levels with your healthcare team before starting a high-potency vitamin.

October 25 (edited)
A myMPNteam Member

even some multivitamins might be bad for taking asperine so inform them

2 days ago
A myMPNteam Member

please also tell your hematologist about the suplements you take even the farmacy
something like drinking grapefruit juce is bad !

2 days ago
A myMPNteam Member

Thank you for sharing your learned knowledge. I have expressed numerous times the necessity to research and question our treatment and supplementation. I am currently taking several supplements, some of which i discussed with my hematologist. I feel very good lately after 15months on Besremi. One rescue phlebotomy in the past 8 months as my feritin recovers from 17 months of phlebotomies. So, 32 months since PV diagnosis. In this time supplements were never discussed by my team. My HOPE is that our treatment will evolve to include homeopathic supplements.
Congratulations on your continued vigor for life. You are inspiring for us all.

October 25
myMPNteam

Are you wondering which supplements may be helpful or harmful when living with a myeloproliferative neoplasm (MPN) like polycythemia vera (PV)?

It's worth knowing that in a Mayo Clinic survey of over 1,300 people with MPNs, 72% reported using an over-the-counter supplement. While some may offer benefits, none should replace Show Full Answer

Are you wondering which supplements may be helpful or harmful when living with a myeloproliferative neoplasm (MPN) like polycythemia vera (PV)?

It's worth knowing that in a Mayo Clinic survey of over 1,300 people with MPNs, 72% reported using an over-the-counter supplement. While some may offer benefits, none should replace your prescribed treatment. Always check with your doctor before starting anything new. Supplements That May Help

These have shown some potential benefit for people with PV:

- Vitamin D – May help reduce excess red blood cell (RBC) production; deficiency is very common in people with PV
- Omega-3 fatty acids – May help reduce inflammation
- Turmeric/Curcumin – Has anti-inflammatory properties and may affect JAK2-mutated cells
- Green tea – Shows some potential, though human trials are still needed
- N-Acetylcysteine (NAC) – May help prevent blood clots, though more research is needed Supplements To Be Cautious About

Some common supplements can actually encourage RBC production, which is something people with PV want to avoid:

- Iron – Can increase RBC production; iron deficiency is sometimes intentionally used as a treatment strategy
- Vitamin C – Can increase iron absorption, indirectly boosting RBC production
- B Vitamins (B12 and folic acid) – Directly involved in RBC production and may worsen PV symptoms A key thing to keep in mind — supplements are not regulated by the FDA the same way medications are. Just because something is natural doesn't mean it's safe, and taking high doses or combining multiple supplements can increase the risk of side effects or drug interactions.

Always make sure your doctor has a full, up-to-date list of everything you're taking, both prescription and over-the-counter.

October 25

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