Hiya everyone
I hope you are all having a lovely weekend.
Little query, just received a free pack of Berocca Vitamins which I used to take years ago. Looking for advice on any contradictions on this for PV patient?
It contains B1,B2, B3 Niacin, B6, Folic Acid, B12, Biotin, Magnesium, Zinc, calcium
❤️
Hi, you need to avoid folic acid, it's a form of iron. It makes your HCT rise
thank you. I will give it to hubby instead
Folic acid is a B-complex vitamin. It is not uncommon to combine iron with the B-complex supplements. Be sure to check the Berocca complex to see if it contains iron, which is contained in some vitamin formulations.
hi Hunter. It does not mention iron separately in the ingredients so expect not
No, Folic Acid enables the metabolisation of iron. Folate and folic acid are forms of vitamin B9 used for deficiency and to prevent pregnancy complications. Since the late 90s, folic acid has been added to cereals, flour, breads, pasta, bakery items, cookies, and crackers, as by federal law in many countries. Foods that are naturally high in folate include leafy vegetables, okra, asparagus, certain fruits, beans, yeast, mushrooms, animal liver and kidney, orange juice, and tomato juice. Folic acid is atherefore a supplement, used in combination with other B vitamins.
Folic acid is used for preventing and treating low blood levels of folate (folate deficiency) and high blood levels of homocysteine (hyperhomocysteinemia). People who are pregnant or might become pregnant take folic acid to prevent serious birth defects such as spina bifida. Folic acid is also used for many other conditions including depression, stroke, decline in memory and thinking skills, and many others.
Excellent summary!
Do you really think vitamin supplements are necessary if you enjoy a mixed diet with lots of fresh veg and fish?
I’ve been recently diagnosed with PV and am one 9 500mg hydroxycarbamide pills per week. Seem to be adapting pretty well. A few rashes. Calomine lotion a great healer. Reasonably active at 73..
The answer would be "it depends." Broadly speaking vitamin supplements should not be needed for most people who eat a healthy diet. However, there can be times when supplements are indicated. As we age, many find that the body does not metabolize nutrients as well. During pregnancy, nutritional needs change. Certain medical conditions and the treatments can change how nutrients are metabolized.
In my own case, taking Nexium for GERD resulted in a magnesium deficiency. It may also be contributing to a vitamin B/folate deficiency. I have another condition, Neurofibromatosis Type 1, that causes a Vitamin D deficiency. Note that I eat a healthy diet but cannot metabolize the these nutrients to maintain the required levels. I do not, however, suggest taking supplements blindly. I had my nutrient levels checked. We rechecked after starting the supplements to ensure the dose was correct. My entire treatment team is aware of what I take. The MPN Specialist has no issue with taking the Vit B/folate supplement.
In my view, there is usually no harm to taking a general multivitamin. The exception is when you have a MPN with erythrocytosis (e.g., PV). Then it it important to avoid anything that contains iron. There also needs to be some caution with Vitamin K when taking a blood thinner. patientpower.info/myeloprol...
Unfortunately, many doctors are not well versed in the role that nutrition plays in MPNs. That is why it is so important for people with MPNs to consult with a MPN Specialist and other doctors with this expertise.
The question is that in mix of things you cant know what is good or unfortunately, bad for your body. Try natural everything and after taking something, firtly check previously if your body need it. For example, before taking vitamine D check if you are low, the same with magnesium, zinc, etc. Folic acid can be obtened by Brasil nuts, for example. It is well documented.
probably not but I am up and down with nutrition and think supplements, if good brand are beneficial.
Glad you are doing well on meds. I am being treated with aspirin and venesection for now.
Doing ok, symptoms up and down. Starting to sneak back a bit so thinking of nutrition/supplement side to enhance
wow might be good for hair thinning but always check with your heamo.
thank you everyone. I plan to find a functional medicine specialist soon as I think whole medical and holistic, alternative approach is important for us with MPN,s. I agree with keeping Haem Consult in the loop but as far as supplements, nutrition goes, my experience is they have little or no knowledge unless they have a specialist interest.
Having been diagnoised in June, I am now only starting to feel like my brain and energy are getting to a stage where I can function to progress with other support for PV and other conditions. Its a full time job managing our health lol
Thank you again. Always love support and advice from everyone. Blessed to be part of this amazing group. 😍
Hi, I have MF and I asked my consultant if I was ok to take Biotin for my hair thinning. I took it for 2 or 3 months but cant honestly say whether it made much difference. A lot of people seem to think it helps.I probably should have given it a bit longer.
Biotin can affect some lab tests, you can see the list if you Google it.
One of the effects of ruxolitinib ( Jakafi) is increased hair growth. Not always wanted. Don't think it makes up for the sarcomatoid sccs, but its an interesting one.
Agree that if you might ever need blood transfusions, watch out for iron in supplements: you can do without the extra. Rachel
hi, during a call a few months back with my MPN haematology nurse I also asked about taking B-complex vitamins which I’ve taken for about 20 years and had continued to do. I was diagnosed with ET Jak2 + in 2019 which has also since been reclassified as ET plus PV ‘to some extent’ as initially platelets were raised and red cells were ‘only very slightly higher than normal’ She advised I should not take ‘Iron tablets’ as this increased cell count and made blood thicker but said the amount of iron in general over the counter multi vitamin supplements was not high enough to be of concern. Not sure if that helps you?
thank you. I am going to air on side of caution and wait until I find a functional medicine/alternative specialist
PV Help with Symptoms
Angioplasty with PV JAK2+
Newly diagnosed with PV
Major surgery with PV
Just diagnosed with pv 
