I have not been diagnosed with PV yet but it is suspected. I’m taking the JAK2 test now.
Just wondering does diet and exercise help at all with this disease? And/or what are the best foods and exercises you can do if diagnosed? Are certain exercises a no no? Like weight training? I do find it hard to do a lot already because of breathlessness, but I don’t want to give up because I want to be stronger.
Any ideas appreciated, thank you 🙏🏼
With PV the aim is not to have high iron levels as this promotes the production of red blood cells. So best to not go crazy on iron rich food. Also vitamin K helps with blood clotting. As that is the risk with all MPNs I make sure hubby doesn't have to much food rich in vit k. Exercise wise I haven't found anything that says you should limit any type of activity but if you are struggling with fatigue then don't over do it & remember to give time to recover. Exercise is seen as a good thing for helping with fatigue so gentle swimming, walking etc... Is good. Hubby struggles with weakness & breathlessness so he just does gentle lifting & we walk a couple of miles every few days depending on what he's been doing during the day. You have to do what you feel able to do so a bit of trial and error, good luck. Hope results come back soon.
Thank you so much for taking the time to reply. I was not aware of the iron or vitamin k information. Really appreciate your answer. Best, Jennifer
Like any disorder a healthy diet is key to keeping your body generally fit. Just as you would with life in any situation.
Exercise too as you can. Sometimes breathlessness limits us. Listen to your body. Rest when you need to. I feel better if I exercise.
Thank you 🙏🏼
Hey Jennifer... 
Simple answer ... YES!
A resounding yes. Diet and exercise has definitely helped me improve in so many ways...
I have just replied in another post about some of the benefits.
Essentially, an anti-inflammatory diet of unprocessed fresh foods like vegetables and fruit. I don't have any added sugar, no alcohol, no soft-drinks, no meat (but you can - this is just my preference), loads of fresh seafood, preferably wild-caught, (when possible), very little diary, loads of fresh water , and sparkling mineral water. I also do quite a lot of intermittent fasting, only eat once a day in the evenings... Drinking loads of water and black coffee 2-3 times a day... and I'm now cycling ever greater distances, and now hoping to undertake an ride of epic proportions...
Doing this diet, not only saw me shed 25-30kgs, in less than 2 years, but also showed a significant molecular reversal in my bone marrow fibrosis. Down from Grade2 to Grade1...
I am now in training to cycle circa 20,000kms in Under 200 Days around Australia... Long ways to go as yet... but the campaign to do so will also help to do specific research into MPNs.
Recently, I have launched a new Australian Patient's website (FORUM) - mpn-mate.com
Please ffel free to come and say hi anytime Jennifer...
If I can do this... well... any one can...
Best wishes
Steven
(Sydney)
Wow! So inspiring, Steven! I was just listening to a podcast discussing Intermittent Fasting and how it can work against cancers. I believe it! And, also cutting out many of the items you have + adding exercise seems like it can only improve everything. I wish you the best with your health and your new website. Best, Jennifer
Hi Steven, found your post very inspiring as at the moment I’m wondering what diet would be best. I’ve got PV, diagnosed 2 years ago and on Hydroxy. I’ve watched a documentary on Netflix last week called ‘The Magic Pill’ about ketogenic diet and got very interested . Patients with diabetes and cancer managed to reverse the illness completely...
My way of eating is similar to yours but ketogenic diet impressed me.. not too sure which way to go now..
Another quick question - what meds are you on currently? Do you take chemo? Tha nk you!
Hey Jennifer...
When first diagnosed, (May 2016), as ET. However, shortly thereafter that was reclassified to MF because of bad bone marrow fibrosis and symptom burden.
Initially, I started on HU. Aside from not being able to tolerate its side-effects very well at all... I was also putting on weight and becoming even more sedentary, not good. Next, they tried Interferon Alpha, and again I was not able to tolerate it for too long either. However, both HU & Interferon did help to reduce my very high platelet regime.
Today, and for these last 2 years, approx'. I have been on Ruxolitinib and low dose aspirin, (enteric-coated of course).
Lately, my ruxlolitinib, is beginning to have a much reduced effect on cyto-reduction, or in other words, its no longer really helping to keep my platelets down. Into the future, I will likely be looking for a combination therapy to help better manage my MF condition.
Ruxolitinib, is known as Jak-Stat pathway inhibitor, and it is meant to reduce the over-production of blood cells by suppressing the immune system. Placing the recipients at much greater risk of infection, hence, one must be careful and take some precautions to avoid infection at all times...
Hope this helps...
Steven
Hi Hybiscus...
I am not sure how much you have learned about Ketogenic diets...?
However, essentially, when we stop over-feeding our bodies, eventually, our bodies will turn to the resources that exist almost latent-like within our systems... our fat reserves.
When that transpires, we are using or own accumulated energy resources...
Low Carb' diets, will help us reach that place sooner, as will Intermittent fasting. However, we still will need to exercise to keep our up muscle toning, and we still require a good source of nutrition... Just smaller portions really...
In the end however, the best diet that any of us can have, is the one that works best for us as an individual... The one we can stick with!
I do break my diet from time to time, but then quickly return to it too...
We are not perfect, and therefore I do not try to be overly strict with myself and my regime, and in that way, I find it a tad easier to maintain.
Inflammation, within our systems has a great deal to do with us and our illness. Hence, by reducing our inflammation, we can improve our longevity, and our Quality of Life (QoL), in my view...
Ant-inflammatory diets, consist mainly of fresh veggies and fruit, and mainly unprocessed foods... I love seafood, but I do not eat raised meat of any kind. Always try to be as organic as I can too...
Hope this helps a little...
Best wishes
Steven
Hi
I’ve had PV for 4 years am now 67 had to give up gym only because of itching but I walk and garden a lot and find that it’s very beneficial - if I get tired I rest for 10 mins then get on with it - plenty water and a healthy diet and hopefully you will be fine - take it easy and listen to your body - good luck and best wishes
Anna x
Thank you!
Where diet can help is with the secondary symptoms many experience with MPNs. The JAK2 signalling system can increase your body's production of inflammatory cytokines in addition to the increased hematapoisis. The inlammation related secondary symptoms may be helped by an anti-inflammatory diet. I also found that a Turmeric-Curcumin supplement was very helpful. I have not used any NSAIDS for inflammation (eg osteoarthritis) for over 2 years since starting the supplement. Hope you find the things that will work for you.
Thanks a million
hi Jennifer,
Diet made a huge change in my health. I’m on the auto immune Paleo diet adjusted to my needs. There is also interim fasting which has helped many. The important thing about diet is, we are all different and must find a good dietician that will understand our dietary needs from a genetic standpoint. My greek heritage says: greek food and not tortillas, schnitzel or whatever. Staying away from GMOs, processed foods and any form of additive is important for everyone. Exercise is really important. But, exercising too much or to exhaustion might even raise the platelet count. (Normal micro Muscle tears, etc. cause muscles might get stronger, but they do activate platelet production). I also get breathless, so I try to do interim training. Just do some to get you heart variability up and then down again. Repeating this over and over will improve your stamina and breathing. All the best!
Hello,
In my opinion you dont have to stress the body. Walking 5 km dialy is a good exercise.
The body need oxigeno .
Diet? Antiinflamatory one will be perfect.
Regards
EXERCISE & DIET ADVICE FROM DOCTOR
PV
I have PV with no symptoms
Medication PV advice please
