Newby

[Hilarya]

Hi I'm new to this having had my diagnosis of Polycythemia Rubi Vera PV confirmed a week ago. Has anyone any advice on diet? I know I shouldn't eat meat and dark green leafy veg but what is good to eat? I'm finding it really difficult to motivate my self to prepare meals as I have no appetite and feel nauseous a lot of the time. I am having venesection weekly and am on hydroxycarbenamide as the haematocrit is still 0.64. Can anyone suggest a source of quick and easy meals?

[Aime]

Hi Hilarya and big welcome to this forum.

I think the advice from the medics is to eat a healthy and well balanced diet which could include meat and green leafy veg if that is what you would normally eat. As far as I understand (but perhaps Maz can confirm) it would take a lot of red meat and iron rich veg before your food intake would affect your iron and red blood cell levels.

If you have a look at the MPN Voice website there is trustworthy advice on it. I find stir frys are quick, easy and nutricious and pasta bakes.

Hope that helps, kindest regards Aime xx😺😺

[Hilarya in reply to Aime]

Thanks for your prompt response. I find the medics have given conflicting advice. Some say it does make a difference while others say, like you, it doesn't unless for example you eat three huge steaks a week. If it doesnt make a difference why do they recommend people who are anaemic to eat red meat and drink Guinness?

[revfee in reply to Hilarya]

Dear Hilarya

Its a big shock at first isn't it? 29 years ago when I was diagnosed I was advised to avoid red meat, wlthough my current doctors say that isn't the recommendation now. And as I'm now anaemic they are telling me to eat red meat... not sure I can after so long!

I suspect that a varied and well balanced diet is what is best, and whilst you are feeling nauseus I'd suggest almost grazing... though with good things. In my experience the nausea is worse if I eat a full meal.

Good luck, Fee

[Hilarya in reply to revfee]

It's good to get advice from someone who's doing so well. Thank you

[Aime in reply to Hilarya]

I think as you say you have to eat/ drink quite a lot of the iron rich food before it makes a difference. I think the advice is to have a balanced diet and always check with your medics re taking vitamins, etc. As Paul and others have said drink plenty of fluids too.

Kindest regards Aime xx😺😺

[Paul42]

Hi

Welcome to the forum.

Its difficult especially at first to get your head around things, take your time its a big shock with any diagnosis.

As Aime has said unless you are eating massive quantities of iron rich food it won't make a lot if difference.

The only way to substantially increase iron quickly is iron supplements.

Have a balanced diet, and drink plenty of water, at least 2 litres a day.

Get your 5 a day, if not more.

All the best

Paul

[Hilarya in reply to Paul42]

Thanks a lot. It's good to hear your advice

[Sand-Dancer]

Hi Hilarya. Welcome to the forum.

I was diagnosed with PV 11 years ago at the age of 53. I still feel fine - and do everything I want to do in life!!!

I also eat what I want. As our friends on here are saying it would take a lot of red meat to change anything (I do use it as an excuse not to eat broccoli however 😂😂)

I have been told not to take iron supplements as it would undo all the hard work we have put into lowering the red blood cells.

Anyway - I take my medication (Hydroxycarbomide and baby aspirin) , drink lots of water and have checkups every 16 weeks and if I am in Portugal where I visit for a few months at a time I have a blood test there and scan it over to him in the UK.

So relax and try not to worry - oh, and you've done the best thing possible by joining this forum! It's fabulous!

Lesley x

[Hilarya in reply to Sand-Dancer]

Thanks so much

[harleydavidson]

Hi Hilarya

Sorry to hear of your diagnosis but welcome to the forum. I was diagnosed with PV 13 years ago and due to venesections, my iron is very low, ferritin at 6 - 8. I am told to eat red meat, liver lots of green veg, nuts, even liquorice in moderation for iron with orange juice or berries containing vitamin C to absorb more of the natural iron. I also eat plenty of fish and chicken.

I hope you feel better soon

Mel x

[Hilarya in reply to harleydavidson]

Thanks that's very reassuring