Vitamin K2 + D3

[Ken Whiteman]

In Japan, MDS patients are often treated with Vit. K2 + D3 orally and the response rate is reported as high as 30% (Professor Miyazawa at Tokyo Univ). I have been on an informal trial for 6 months and nothing seems to have happened although virtual stability in my counts may in fact be a good sign. And there are absolutely no side effects either. Has anyone else any experience with this form of treatment?

Ken Whiteman (MDS- RCMD)

[sandeepsodhi]

how can we also can do this trial?

thanks
bonnie

[Ken Whiteman]

Because these are vitamins there are no insurmountable obstacles in creating your own trial although your doctor's approval would be advisable if only in monitoring any adverse effects on elevated calcium levels (which has not occurred in my case).
The dosage is 45mg Vit K2 daily and 0.75micrograms Calciotrol (not the normal Vitamin D3) taken orally every day. In Japan they seem to give it 6 months to see if there are results.
You may have trouble finding Vit. K2 capsules as opposed to Vitamin K capsules which include K1, K2 and K3. In Australia they were imported for me direct from Japan where they are manufactured as "Glakay" by Eisai Co. Ltd. in Tokyo. They are also more cheaply available in Bangkok, Thailand where the same capsules are repackaged for the local market under the same brand name and packaging.
You should do your own search on this therapy - look up "Vitamin K2 and MDS" or have a look at reports by mainly Japanese researchers especially Professor Miyazawa. There was also a paper presented at the 2005 ASH conference.
Frankly I think it is worth discussing with your doctor as there seems there is almost nothing to worry about regarding adverse side efects etc. and the cost is hardly a burden.
Good luck,

Ken Whiteman

[sandeepsodhi]

hi

is there anyway we can contact and join this trial of Vitamin K2 + D3 ?
From what i find on internet this is a worldwide trial, is there any contact that can be provided?

thank you very much
bonnie

[Ken Whiteman]

You can create your own trial by simply buying the vitamins yourself or if necessary through a doctor's prescription. The Glakay (Vit. K2) is manufactured in Japan and as I believe you are in Hong Kong surely this would be readily accesible perhaps through a hospital pharmacy. Be careful to take the dosage as indicated in my previous post as one capsule three times a day adding up to 45mg of K2 and 45 micrograms of Calciotrol (derived from D3) Have a calcium level blood check and monitor the level after a few months to make sure there is no adverse effect - which would be unusual according to the research.

Also clear all this with your doctor of course; this is an unusual therapy for MDS which apparently does work for some. It is not a drug treatment which is no doubt why little attention is given to it in the USA and other countries. But definitely worth a try : no downside and inexpensive.

[sandeepsodhi]

thanks for your information

will there be any effects on me since i am a Hepatitis B virus carries
i am asking on this forum because my dr seem not to care about any alternative medicines. that is why i hope if there is a way can contact japan's people directly

thanks
bonnie

[Ken Whiteman]

Bonnie,
I am not a doctor but I cannot see how your Hep B condition would be affected by a course of these vitamins. Seems like you should be changing doctors immediately if your existing doctor is so lazy.

[Robert siu]

Dear Bonnie
We were from Hong Kong but now moved to live in New Zealand.We share the same feeling with you on the ways HK doctors treated their patients.My wife was also Diagnosed as MDS RAEB in 2004 and treated at the University of HongKong Blood unit and had bad experience with the doctors there.We went to Shanghai and other places to look for alternate treatment and are now taking regular herbal tea.Other then the regular 6 weekly blood transfusion my wife looks normal,her white cells and platelets were also half the normal level but maintain that for the last three years.Rgds Robert siu

[sandeepsodhi]

hi robert thank you for your support and message

is there any recommendation you can give for herbal dr. here in hong kong that you know of? or you are having natural treatment in new zealand?

thanks
bonnie

[Brian Mullan]

You can create your own trial by simply buying the vitamins yourself or if necessary through a doctor's prescription. The Glakay (Vit. K2) is manufactured in Japan and as I believe you are in Hong Kong surely this would be readily accesible perhaps through a hospital pharmacy. Be careful to take the dosage as indicated in my previous post as one capsule three times a day adding up to 45mg of K2 and 45 micrograms of Calciotrol (derived from D3) Have a calcium level blood check and monitor the level after a few months to make sure there is no adverse effect - which would be unusual according to the research.

Also clear all this with your doctor of course; this is an unusual therapy for MDS which apparently does work for some. It is not a drug treatment which is no doubt why little attention is given to it in the USA and other countries. But definitely worth a try : no downside and inexpensive.

Hi Ken,thanks for all the information on Menatetrenone a vitamin k2 analogue(Glakay).I live in Brisbane and I have seen my Hematologist and he cannot give me a prescription.He contacted the Wesley Pharmacy but they had no knowledge also.I have contacted Eisai in Tokyo who told me it can only be ordered through a International Pharmacy which brings me to ask how you are ordering yours.These 2 sites I found interesting http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10641439&dopt and http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed I hope you can help

Regards Brian Mullan

[Brian Mullan]

I received my stock of Menatetrenone this week.I ordered it from an online Chemist and received it 10 days after the order was placed.The cost was $63 US per hundred capsules.I will keep you informed as to how things go.My doctor was quite supportive.

Regards Brian Mullan

[choijk]

Thank you for sharing alternative methods. Please continue to share your experiences as I would like to hear more about your experiences. In the meanwhile, if I am able to explore other avenues of other methods, I will put my findings on the forum as well.

Best of luck with the vitamins. -June Choi

[Brian Mullan]

I have taken menatetrenone for the last 11 weeks but unfortunately my disease has progressed to AML and I will commence chemotraphy this week.I said I would report back as to how I went taking the VK2.My counts were very bad when I started Haem 90,WCC .7 Neut .3 and Platelets 14 and I needed transfusions weekly to keep them at those levels.I think it could have worked if I had started earlier????????

God Bless and Good Luck
Brian Mullan

[Darla]

Ken,

I was just diagnosed last month, and am interested in pursuing the K2 treatment. I also have Post Polio Syndrome and the dr I see for that has me on 7200 mg of D3 to treat the symptoms of that. After my MDS dx, he also suggested I check out K2. I found the Japanese studies and a source of K2, and joined this forum for the express purpose of asking if anyone had tried it. Was thrilled to find this tread! It's been almost a year now since your initial post -- what result have you experienced?

[AquaJeff]

Hi all,
My Mom (81 years) has early MDS. I've read about the Japanese and Dutch studies regarding K2 therapy but there hasn't been anything new for years. I also noticed that the last post here was on Jan 31 2008 and it is now April 2009.

I was wondering how Ken was doing after all this time. I was also hoping Brian and Darla are doing well. Good Luck to you.

Does anyone have any more info on K2 & D3 treatments?

[Von Hamrick]

In Japan, MDS patients are often treated with Vit. K2 + D3 orally and the response rate is reported as high as 30% (Professor Miyazawa at Tokyo Univ). I have been on an informal trial for 6 months and nothing seems to have happened although virtual stability in my counts may in fact be a good sign. And there are absolutely no side effects either. Has anyone else any experience with this form of treatment?

Ken Whiteman (MDS- RCMD)

Ken, are you taking K2 and D3? The strongest K2 that I could find was 1,000 mcg or i mg. The studies I read were using 40 mg.
Von Hamrick (MDS-RAEB)

[Von Hamrick]

Ken are you still on K2. Is it helping. Let us know how you are doing>

[glitterandlace]

Interesting,, have people thought of finding out which foods those vitamins are in and just eating the foods instead? The body might absorb the vitamins better that way. For example vit K is in Kale, and vit D is in mushrooms,,,,, I am starting to increase those in my diet after reading this.

[DanL]

The challenge with getting this much vitamin K2 in food is that it would take roughly 40 cups of Kale to reach the 45 grams of Vitamin K2 that was taken in the trials done in Japan. The vitamin D3 can be obtained by hanging out in the sun for about 20-30 minutes without sunscreen. Even if your body only needed 1/4 of the kale as was needed in pill form it would require about 10 cups a day. Being a fan of leafy green vegetables, it is hard for me to fathom 10 cups of kale in a week, much less each day.

it is a good thought and shouldn't discourage people from trying to get as much as possible through natural sources though.

[Marlene]

I though it was 45 mg of K. And of that, not all of the vitamin k in the supplement taken will be absorbed. Absorption will depend on how well each persons digestive system is functioning. This is true for food too.

Be sure to include herbs, fresh and dried, in your meals. Basic, thyme, , oregano, sage, cilantro, parsley, marjoram, dandelion, etc have lots of nutrients in addition to vitamin K. They have anti-microbial properties as well.

[DanL]

Marlene,

Thank you for correcting me, you are right, it is 45mg. Fortunately, my calculation still holds because there are 1147 micrograms in a cup of kale. I meant to put 45mg, but goofed. Grams sounds so much more grand.

[Marlene]

Yes....that's still a lot of kale :).

[Lbrown]

Even *I* don't like kale that much, and I sure do love kale!

FYI - vitamin D is known to be harmful to people with sarcoidosis. It is thought that it could be bad for people with autoimmune diseases in general, because part of the problem seems to be a dysregulation of the body's vitamin D. My treatment includes avoidance of vitamin D, and sun. Also when you take certain drugs like cyclosporin, you're supposed to avoid sun due to an increased risk of skin cancer due to the immune suppression.

Deb

[glitterandlace]

vitamin D regulates the immune system. I heard it was good for people with auto immune diseases.... I was taking it all last week and seen improvements in my RBC counts... I sent my boyfriend to buy more cause I only had a week supply..... I sure hope it works!

[LoveRapheal1]

Yes my doctor said vitamins are more readily absorbed through what you eat. He is a specialist so he would know. Kale is good, Good LuckInteresting,, have people thought of finding out which foods those vitamins are in and just eating the foods instead? The body might absorb the vitamins better that way. For example vit K is in Kale, and vit D is in mushrooms,,,,, I am starting to increase those in my diet after reading this.

[Lulu]

He is a specialist so he would know

Don't be so sure! Sadly most doctors know very little about nutrition. My haematologist had not heard of the vitamin K/D studies. I suspect that there is a subset of MDS which is caused by malabsorption of those vitamins due to gut damage/gallbladder malfunction, which bumps up the requirements dramatically. There is some detailed information about one of the trials here:
http://www.sciencedirect.com/science/article/pii/S0145212610002080

Interestingly, this trial excluded patients with known malabsorption issues, and I wonder if they ran the trial again on those patients whether the response rate would actually have been higher? I responded very well to it, although I would not have been eligible for the trial.
There is a summary table here of research that has been done so far:
http://www.nbihealth.com/t-MK4research.aspx

It would be impossible to get 45mg of vitamin K through diet, however juicing green vegetables like kale might help.

[tom30]

Hi, The way I understand these studies are based on Vit K2 not K1 which would be found in kale. K2 is found is small amounts in eggs, meats and some other items which would be difficult to consume in the required qty. I prefer to rely on food for vitamins which makes sense to me but I take b12, k2 and d3 in pill form.

[Lulu]

Hi Tom, yes the vitamin K in vegetables is a different form to what is found in animal products. From what I understand, in a healthy person K1 is supposed to convert to menatetrenone, but some people do not convert it as well as others. This may be a reason why some people do better on paleo-style diets.

Ideally it would be good to get all vits from food, but I get very ill if I do not take supplements. Have just had a vitamin D test back and it was 44 (should be 50+) despite supplementing 3000mg daily for 18 months.

Apparently Natto is one of the most bioavailable sources of vitamin K, but you cannot get it in the UK and it sounds disgusting!