Hello,I'm new here and have a question - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hello,I'm new here and have a question

jsr7 profile image
jsr7
6 Replies

Does any one have any experience or thoughts on taking Vitamin K suppliments,I'm a warfrin liferMy INR nurse told me it's not a good idea.I read anarticle saying just the opposite but to take it 8-12 hrs. apart from warfrin.Any thoughts?

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jsr7
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HollyHeski profile image
HollyHeskiAdministrator

Hi, I see you have just joined, welcome. You don't say why you are on warfarin or why you wish to take vit k supplements?

We here all have APS/Hughes, which is sticky clotting blood.

I wouldn't advise any supplements, especially Vit k when on warfarin without seeking medical advice.

Important thing here for us is having a good APS/Hughes specialist - where are you based and do you have this?

Lure2 profile image
Lure2

First we must know if you have a diagnose of Antiphospholipidsyndrom. We need a Specialist for our illness which is also a blood-disorder with too thick blood that gives us clotting-issues etc.

Never start any K-vit without talking with your nurse or Doctor. Could be dangerous. If you suddenly eat a lot of greens perhaps the Warfarin will not have any effect. I eat greens but I eat it every day and the SAME amount of it which is important. If I did not eat it I had to take a higher dose of Warfarin.

Ray46 profile image
Ray46

As far as i am aware the _only_ reason to take VitK while on warfarin is that it _can_ help stabilise INR in people who are on low doses with unstable INR. It _must_ be done only on medical advice and under close supervision - because warfarin dose will need adjusting.

Taking warfarin and vitK 12hrs apart makes no sense because warfarin half life is about 40 hours, and even if it was short it makes about as much sense as saying "take vit K before bed so you only clot at night when you won't notice".

On warfarin you are vitK deficient _by design_. Is being vitK deficient a bad idea, does it have bad effects - yes, but you are on warfarin so you are vitK deficient and there is no way to supplement yourself out of it, end of story.

ndstephens49 profile image
ndstephens49 in reply to Ray46

Clotcare, a site located in San Antonio, Texas, recommends Vit k supplements in coumadin patients with very erratic INR’s. Henry Bussey(spelling?), runs the site. He has a PhD in pharmacy. He explained it to me in an email. It took me a while to understand. If you contact this site he will answer any questions you have.

It seems counterintuitive but it has been shown that Vit k supplements stabilize INR’s in many patients. The important thing is these supplements must be taken EVERY day. No skipping or running out.

The reason it works, if I can explain it, is that if you take, say, 100 micrograms Vit k per day, any variability in food Vit k intake

is lessened or minimized. The daily variability of food Vit k becomes a smaller percentage when 100 micrograms Vit k is taken every day.

The site also explains why some patients have quite variable INR’s.

Of course, you should not take supplements of Vit k without getting your doctors permission.

When I contacted this site several years ago, he answered many of my questions and was the first to tell me my meter had been recalled. Somehow I was lost in the system and my INR’s on the meter were nowhere close to lab values. Therefor, I got a new meter and it is quite accurate for me.

Nancy in West Virginia.

daisyd profile image
daisyd

Don’t take it

Margot profile image
Margot in reply to daisyd

Well I take it when my INR is unstable and it helps Vitamin K2

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