One of my family members has had recent diagnosis of suspected Polycythaemia vera (PV). Struggling a bit with finding right option with treatment plans as seems to be conflicted opions with what is more suitable, as iron is also low which is making it tricky. Some consulatants are saying to take a bit if iron, another says no absolutely not. My family member is continuing on with venesections for now until there is a more solid option to go down.
Just wondered if theres anyone else on a long term treatment plan yet for Polycythaemia vera (PV)? As can imagine all the family are a bit confused with conflicting opinions at the minute.
Hello there @chloe.19x, welcome to the forum. It’s so caring of you to come here for information to support your family member, they’re very lucky to have you.
In 2023 I was diagnosed with Polycythaemia vera (PV) and I’ve since followed the treatment plan my haematologists and I came up with. Initially this was frequent venesections (fortnightly, then monthly, now only when my haematocrit is above 45 %), daily aspirin, and daily hydroxyurea (a mild chemotherapy). Now that the hydroxyurea has stabilised my blood cell overproduction I rarely need venesections, like twice a year. I’ll share the great Blood Cancer UK information about Polycythaemia vera (PV): What is polycythaemia vera (PV)? | Blood Cancer UK
From my non-medical understanding, you’re right to be concerned about your relative’s iron intake as it can cause our bodies to produce more blood cells. The main symptom of Polycythaemia vera (PV) is it causing our bodies to overproduce blood cells, hence our main risk of clotting due to an abundance of blood cells in our bodies. The venesections remove excess blood while the medicine helps slow down the overproduction at its source in our bones. This all decreases our risk of clotting events like strokes or heart attacks.
So I would want to ask your relative’s haematologists why they are suggesting taking iron and also saying not to. Which one is in charge of your relative’s treatment? Ask that one to speak with the other doctors so they have just one plan. Explain that at this delicate stage after diagnosis your relative needs one plan and not contradictory information. It’s confusing enough as it is without our doctors contradicting each other, like too many cooks in a kitchen.
I’ll share an anecdote because I used to take a multivitamin with added iron prior to diagnosis with Polycythaemia vera (PV), and a few months into treatment my former haematologist wondered why I was still needing such frequent venesections. Anyway, as he hadn’t told me I needed to be cautious around iron-rich food or supplements I hadn’t stopped the multivitamins. When I changed to my second haematologist he checked many aspects of my health and told me to swap to an iron-free vitamin. Lo and behold, I needed venesections less often.
Anyway, I know others around the forum living with Polycythaemia vera (PV) might, under strict supervision, have iron infusions when they test low, but this is done intravenously in hospital. I would suggest your relative speaks with the doctor in charge of their care and gets it on record whether they should minimise their iron intake or not.
Hope that helps a little @chloe.19x. Might your relative want to join the forum too? It’s super helpful for finding out factoids and keeping in touch with others living with this weird rare blood cancer!
Generally the aim is to keep someone low with iron .Iron is a substrate for Red blood cell production.Patients with Polycythemia Vera are advised to reduce foodstuffs with high iron content such as red meat ,beans,peas,nuts etc .I think the contradictory advice from the two doctors is due to the already low iron level of your relative. It is better to ask them for more clarification.
