Newly diagnosed with PV

[Jasbak22]

Hi my name is Jason I'm 45 and have recently been diagnosed with PV. I don't have many symptoms at the moment, just a bit dizzy and cheeks flushed. Just looking for some advice on diet i.e. what to avoid to try and keep my counts in check.

Many thanks in advance.

Jason

[Paul42]

Hi Jason, welcome to the forum.

I am 45 too with PV, diagnosed 3 years ago.

Has any treatment regime been agreed for you yet?

With regards to diet to keep your counts in check, I will be honest I dont think diet will do it, you may be told to avoid foods high in iron but in all honesty you would have to eat copious amounts of iron rich food to have any effect on your iron levels.

(Iron feeds your red blood cell creation)

My biggest piece of advice is drink plenty of water, i ry for bout 3 litres of fresh water a day. While it won't lower your counts, being hydrated does help keep your blood thin so it is a huge benefit.

Also, excercise as much as you can.

I know others do follow diet protocols with some success at helping with fatigue etc, i find being sensible is my best approach. I try and eat healthy but dont beat myself up if i have treats now and then.

Often its about finding whats right for you.

Good luck and dont be afraid to ask any questions, are you in the UK?

Paul

[Jasbak22 in reply to Paul42]

Hi Paul thanks for your reply good to hear from you. I've had two venesections and feel better not as dizzy or face flushed anymore. I'm quite an active person so haven't noticed any fatigue which I see a lot on this forum. But will up the exercise levels going forward. I've gone from drinking very little water to about 2.5 litres a day so hopefully that'll help. I'm in Hampton, London.

Thanks for your reply once again.

Jason.

[rubyrubyruby]

Hi. I am 41 and was diagnosed at 37. I also have PV. Totally agree with drinking large amounts of water. My fatigue and headaches are worse when I haven't drunk enough.

If you are not under Prof Claire Harrison at Guys already, my best advice is to get a referral to her. They are experts in MPN's and particularly at our age, you need to ensure you are getting the right treatment and advice.

[Jasbak22 in reply to rubyrubyruby]

Hi thanks yes I've heard about her from this site I'm currently being treating privately but that will run out soon. So I will ask the specialist treating me for referral to her. Thanks so much for the advice. Jason

[Mazcd Partner MPNVoice]

Hi Jason, welcome to our forum, I can see that you have had some very good advice to your query. Just ask any questions you have, we are all more than happy to answer them for you. Best wishes, Maz

[Jasbak22 in reply to Mazcd]

Thanks Maz,

[harleydavidson]

Hi Jason. Welcome to the clan. I am 49 with PV diagnosed 13 years ago. I see that you have had good advice from the mpn family. A couple of years ago i lived on a pomigranite and fish diet to lower my platelets, it worked but other levels went up and I still had to start meds, so just be sensible and eat healthily. Stay well. Mel x

[Jasbak22 in reply to harleydavidson]

Thanks Mel I'm starting to feel like part of a special clan. Thanks so much for your advice. Jason

[Aime]

Hi Jason, welcome to the forum. I have PV too and would echo what others have said about drinking plenty of water and just eating as healthy a diet as possible. The best thing I did after my diagnosis was join this forum as there are some wonderful people on it who will support you so well because they know exactly what you are going through.

Maz, our editor monitors the posts on the forum and can also get medical info for you. She also organises forums all over the country which are great to attend to meet fellow sufferers face to face and medics also. There are also family groups at the forum which are so important as our families are going through the PV journey with us too. The MPN Voice website is a goldmine of trustworthy medical info.

Kindest regards Aime xx😺😺