Hi Margo,sure you will get lots of advice from P V people! I am P V 8yrs ,my hematocrite is always high,rarely below 50.I avoid meat as much as poss,have fish ,chicken,salads and veg.Dr prescribes,vit D as I must stay out of sun as take Hydrea,otherwise take a muti vitamin every day and pure Royal Jelly.,that helps immune system.I walk ,play and train my two German Shepherds,one just 8 months old....I feel that is more than enough exercise!Have two horses as well,don't ride now as they are very old ,so am I , 77years but they are to look after.I drink loads of water because of H U medication,enjoy an apero of Irish whiskey otherwise don't touch alcohol.So don't worry too much ,lots of best wishes to you.Sally
Hi Sally thanks for the message your advice is very sensible. Just going through a bit of a blip at the moment which I think happens to us all at times
We certainly do Margo, I hope you soon pick up, the bad days are awful,just have to fight thru them,not easy I know.Keep strong,tomorrow will be better...best wishes,Sally
Hi Margo, so sorry you’re going through a rough time. It happens to all of us and it’s never fun. There’s a woman named Twinkly on this forum who swears by her change of diet making a huge improvement. I think it’s mostly or all plant based but not certain. Perhaps you could search for her posts by name or look through the topics. I’m not much help because the best I do is 2-3 liters of water and gentle walking even though I’m certain I’d feel better with less sweets (especially chocolate) & more exercise. Good Luck. And hang in there, things will improve for you. Katie.
There was a webinar on exactly this topic just a couple of days ago. It was run by the US based Patient Power and featured a nutritionist and Dr Ruben Mesa and a number of patients. The link was posted on this forum earlier this week by PV Reporter.
I only got the second half - hope I can catch up on the first half on the website - but some of the take home messages appeared to be .....
1. Eat a healthy balanced diet - lean protein, plenty of fresh fruit and veg, cut out / limit processed foods, sugars etc and drink plenty of water. Basic, sensible stuff. 2. Take some exercise, any exercise! If you’re not already an exercise fanatic no one is expecting you in the gym five days a week. Getting out and walking has huge physical and psychological benefits. Ruben Mesa is currently carrying out a research programme on MPNS and yoga. (He mentioned this at the recent MPN Day in London.) The yoga programme should be available on line in due course. 3. Forget vitamins. If you eat a regular diet you don’t need them. And if you really want to take a multi vitamin don’t spend very much money and check with your haematologist first. Hope this helps!
I was diagnosed with ET last year in November. Straight away I went to see a herbalist who put me in a simple elimination diet of no tea, coffee, sugar, dairy or gluten for a month. I was about 16st at the time but I started to lose weight which I have never managed to do before. I am 61 and 5'8 tall. I found this diet really good, I now weigh 12st 8 and would like to lose even more. Now I am really interested in health related issues and I have come to realise that we are all different, so each person has to make a study of themselves, lasting about 2 years at least. Whatever a dietician, doctor, health care professional tells you, do not take it at face value, study it. Yes I am also going on long walks and doing a bit of yoga, seems to be enough at my age. I used to walk 40 minutes a day but I have increased it to 1 hour 10 minutes to try and lose a bit more weight.
Hi Margot I've had ET for about 20 years and I'm 61. I just try and eat a healthy diet in a general sense with low fat food, not much red meat and lots of fruit and fresh veg. I think it's also important to have a little treat now again! For exercise I walk a lot and go horse riding and that seems to work for me. I don't like gyms as I prefer to be outside.
Have had Et for 3 years and only in aspiin. My platelets have rocketed but now seem to be level.1134. I do yoga Pilates and enjoy a good walk.. little light jogging in the walk. I think you should do what ever makes you feel good and healthy.
Take the advice and gave a good think in it will be the answer. Always check with your Dr..or haemotology clinic.
Best of luck.. I swear by yoga! Not that I can bend much.
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Anti inflammatory diet 
Ketogenic diet and PV
Update 5.9
MPN anti-inflammatory diet sheet 
