Hi all, I was wondering if anyone was able to provide any helpful direction into any of the following:
- Generally what kind of diet have you found beneficial
- Which foods should be avoided
- which foods may be beneficial
- any vitamins and supplements that are beneficial
- any vitamins and supplements should be avoided
I am conscious that everything has to be in balance, I want to where possible change my diet so that it is beneficial to the condition.
thank you
Hello Mart456, we have some information on our website which might help youmpnvoice.org.uk/living-with...
best wishes, Maz
Hi Mart,I’m Louise, 66 and diagnosed with PV 12 years ago.
I take levothyroxine, aspirin, ( 75 mgs a day each) and hydroxicarbamide ( 1000mgs daily ) I’m well, active and the great majority of the time don’t suffer from fatigue or many of the other symptoms of PV. Creaky joints sometimes but this is probably age.
Is this due to lifestyle and diet? I have no idea.
I drink at least 2 litres of water per 24 hours along with hot dinks.
I don’t drink alcohol or caffeine or decaff drinks. I don’t drink rubbish fizzy stuff either but I do drink decent stuff such as Fever Tree ( no preservatives etc) and apple juice.
I eat as much organic food as I can in the belief that I already consume enough chemicals without heaping more in by way of diet!
I prefer to spend an extra ten to fifteen pounds a week on that, than wine!
My husband raises his eyebrows at the price of organic chicken ( £12 rather than £6) but I reckon if my dog now won’t eat cheap chicken and will only eat organic, there must be something horrible in the cheap stuff!
Do I eat carbs etc? Of course I do, but I do try to avoid processed and packaged food if I can. Not always.
I walk at least once a day for an hour and a half at a brisk pace, twice if I have time.
Am I a sandal wearing loon who bays to the moon? No.
I do have however another condition called histamine intolerance, which makes me react to rubbish foods, where most other folk don’t.
( I had a 9month course of a very searching antibiotic 7 years ago which caused this)
However, if I react - then I surmise that rubbish food isn’t really any good for anyone!
I don’t take vitamins or supplemts. I think I get all I need from my very balanced diet, mostly salad, veg and fruit with small smatterings of protein.
The rule is around 70% veg, 20% protein and 10% carb on your plate!
Sainsbury’s have a great range of organic food, which is increasing all the time., but it depends whether or not you want to go down that route.
I know that the majority of folk with mpns just carry on as normal.
If it’s any comfort I did study diet, nutrition and dietetics at uni about 90 years ago, so I do know what I’m talking about.
If you’re tempted to take turmeric, do your research, as it is isn’t recommended for everyone.
All the best
Louise
thank you for the reply so far, generally, I was hoping to know if there were any specific foods or supplements that should be, considered or avoided.
Unfortunately, going organic is not always practical or achievable financially.
And I was hoping to understand a little more about which foods may generally be beneficial to the condition.
currently, I really don't have any sugar, fizzy drinks, crisps, snacks or chocolate lol, my food life is quite bland at the moment.
i eat complex carbs, avoid red meat, little chicken, some fish, I eat Blueberries with my breakfast.
I do drink turmeric tea, is that a problem?
I have been taking vitamin C slow release 1000mg? is vitamin C something that is beneficial or bad for the condition?
I take a multivitamin daily?
What about alcohol in moderation? is this something that we need to avoid, is it ok in moderation, like a glass of wine every other day.
Are flavonoids / Flavanols beneficial to the condition?
Are supplements like Resveratrol beneficial? or harmful?
Sorry for the questions, I have just been diagnosed, and just wanting to understand what adjustments I can make to help improve my long-term outlook.
Turmeric , /curcumin fine .If you are enjoying it . Not particularly medicinal in that form .
slow release vit c .. good
Multi vit not harmful but you may not need some of vitamins . And multi vit often not such good quality . Best finding out what you are low in . How is your vit d level?
Red wine in small amounts is actually
recommended!
I’m just going try Resvetarol . My Ayurvedic practitioner is just looking into best one to get . Will let you know
Mediterranean based diet recommended , anti inflammatory.
It’s good to ask questions !!
Hi In general turmeric isn’t recommended for those on chemotherapy. If you take hydroxicarbamide which is a mild chemo drug, then best avoided I think.
I don’t think a small amount of alcohol will do any harm.
I have no idea which supplements might help you, sorry.
I would say that little stress and worry, rest of you need it, and cup three quarters full is hugely beneficial
. Louise
Living with a MPN makes managing our health effectively all the more important. The things that contribute to good health, especially cardiovascular health, are good for managing the MPN. One thing to factor in is that at the core MPNs are inflammatory disorders. Controlling systemic inflammation is very important in managing the secondary symptoms many of us experience. There is some emerging evidence that controlling inflammation also helps slow disease progression in MPNs and other cancers.
Regarding diet - there is support for a Mediterranean diet. Also for the very similar anti-inflammatory diet. This is what I (mostly) follow. It would be a big yes to flavonoids/flavanols and polyphenols.
Regarding supplements - there is support for curcumin (contained in turmeric) as an anti-inflammatory agent. I found it to be more effective than any NSAID I ever used for controlling osteoarthritis. There is also support for the use a N-acetylcysteine specifically for inflammation in MPNs (ref. Dr. Angela Fleischman). I actually use L-Glutathione, which is the downstream anti-inflammatory NAC produces in your body. I also take a fish oil derivative called SPM Active. I am doing all of the above in consultation with an Integrative Medicine physician. These supplements do in fact interact with the meds you might take.
Regarding vitamins - no different than anyone else. Take what you need, but don't pop vitamins just because. I am taking Magnesium, Vit B/Folate, and Vit D - all because I have measured deficiencies. Dosing has been titrated to match my response (ability to metabolize the vitamins). This is also done in consultation with an Integrative medicine doc.
Things to avoid - Iron supplements if you have PV. Fish oil if you take aspirin (due to potentiation of blood thinning). Caution with all anti-inflammatories with aspirin as they all tend to potentiate blood thinning to some degree. Note that most docs are not familiar with drug-supplement interactions. That is why I consult with an Integrative Medicine doc (aka Functional Medicine). Other things to avoid in diet include: pesticides, synthetic hormones, xenoestrogens, BPAs, antibiotics, artificial coloring and sweeteners. That is really just general health, but all the more important for us.
Lifestyle choices also matter quite a lot. The best way to stay moving is to stay moving. Cardiovascular health is especially important. We are more prone to inflammatory conditions like osteoarthritis and the build up of uric acid in joints. Finding exercise that works for you is really important. I practice Qigong and GungFu as well as some basic moderate cardio. Alcohol consumption is OK in moderation. It is very important to avoid dehydration. Better to stay very well hydrated in fact.
Hope that helps.
Food after ET diagnosis.
ET and iron intake and supplements
Diet + Exercise for PV
magnesium supplements 
Supplements
