polycythaemia anaemia

[Luger1067]

has anyone with polycythaemia Vera had their severe anaemia treated

[hunter5582]

It depends on whether you mean iron deficiency or anemia. They are not the same thing. Anemia is a deficiency in hemoglobin/red blood cells. Iron deficiency is a deficiency in iron levels. While iron deficiency can cause anemia, anemia can have other causes as well.

It is common for people with PV to be iron deficient but not anemic. In fact, by definition, people with PV have too many RBCs. The KISS explanation being that the body is using up all the available iron to make RBCs. At the core, PV is, in part, an iron dysregulation disorder. nature.com/articles/s41375-...

Many people with PV are using venesection to control the erythrocytosis. Venesection is intended to further deplete the body of iron by removing the RBCs that contain the iron. It is the intent of the treatment to make the patient iron deficient without inducing anemia. It is possible to overshoot the mark and actually make someone with PV anemic. This happened to me. I ended up with HCT = 32%. I actually was prescribed iron supplement to get my levels back up, which is usually contraindicated for someone with PV.

Please do be sure to review your question with a MPN Specialist who can do the best job of giving you a case specific answer to your question.

[Luger1067 in reply to hunter5582]

Thankyou hunter

[Luger1067 in reply to hunter5582]

hi hunter I’ve checked and it is anaemia I’ve been prescribed a short douse (2 weeks) of iron tablets

[mark382]

I've had PV for 15 years and occasionally get anaemic. At my last appointment my Ferriti level was 3. Haemoglobin 116 and hematocrit 40. I'd had 2 pints of blood removed about 2 months before my appointment. My consultant doesn't want to give me iron tablets unless I'm really suffering and then it would be a very low dose over a very short period of time and booking made to get blood off me. The reason being that last time I had iron my hematocrit shot up very quickly and put me at risk of a stroke". The consultants words. She told me to eat iron rich foods like red meat, peas, beans - chickpeas, nuts, dried fruit and best of all chocolate, preferably dark chocolate. So when people comment on me eating chocolate I can now legitimately say I'm eating it on medical advice🤣. By eating nuts etc my Haemoglobin has gone uo to 121 and my hematocrit has gone uo to 42 within a month. I have had iron tablets from haematologist quite a few times in the past and my levels have increased steadily, with no problem. Don't know what happened last time as my hematocrit went from 43 to 49 in 2 weeks. Hope iron tablets are making you feel better. They certainly helped me when I had them previously.

[Luger1067 in reply to mark382]

Thankyou for your reply mark. My ferritin is 5. I’ve only had 2 iron tablets so far but I will definitely give the iron rich diet a go karen

[mark382]

You're welcome. I don't know how long you are on iron tablets, but have they arranged a blood test fairly soon after finishing them, so they know your hematocrit level. Fortunately I like nuts, dried fruit and especially dark chocolate. I tend to eat these as treats between meals. Meat and peas, beans etc as part of my main meals. Take care.

[Luger1067 in reply to mark382]

I’m on one tablet a day for 2 weeks and soon after that a blood test. I too love dark chocolate. I’ll go shopping today. Thanks again karen

[mark382]

Sounds like a similar plan to when I've had iron tablets. Just be careful eating iron rich foods if you are already on iron tablets. I'm not on them so was advised to eat iron rich food to build up iron naturally. Good excuse for eating chocolate though!. Take care hope all goes well.

[Luger1067 in reply to mark382]

good point will do