Diet and Supplements with Coumadin - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Diet and Supplements with Coumadin

DannyBoy1 profile image
10 Replies

Interesting compendium of data on diet and our drug. Basically, it urges us to quit trying to get healthy and just take the damned drug. I wonder what effective alternatives we have to Rat Poison or daily injections of fragmen?

livestrong.com/article/3792...

livestrong.com/article/4883...

livestrong.com/article/5485...

livestrong.com/article/5419...

livestrong.com/article/4987...

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Lure2 profile image
Lure2

Thanks for the very good info about supplements and alcohol when taking Warfarin.

We all know that when using Warfarin we shold eat the same amount of everything and if possible every day also.

I haver very fluctuating iNRs as I am triple-positive with high titres all the time so I just have to stick to this regime, if I want to feel good, which I want to of course.

I also drink one glass of red wine for dinner every day (1,5 - 2 dl not more never) but I only take supplements on prescribtion by my Specialist and then I take them every day.

I take Calcium and D-vit with my other drugs each day.

Best wishes to you from Kerstin in Stockholm

GinaD profile image
GinaD

Doctors can be ruled by fear! I take supplements, but the key is consistency! I also eat 4-6 servings of green leafies a day , and again, the key is consistency! Like Kirsten, I drink a glass of wine or gluten free beer with dinner. The key is consistency! Doctors do not, or are told by officials they can not trust patients to exercise an ounce of self control or reason. And with some patients such caution is appropriate, But must of us can and want to be active participants in our own care. And when taking warfarin, the key is consistency!

MaryF profile image
MaryFAdministrator in reply to GinaD

Yes, us lot have to be disciplined with diet, exercise, and any supplements we may be able to take. I am not on Warfarin, but every day I take a large amount of supplements, but also follow a Mediterranean diet, minus gluten, (with brazil nuts added), as when gluten free we can become deficient in Selenium. Every day, unless with an infection, I do one hour of cardio vascular exercise, not including my walks into town or cycling. It is hard, and sometimes I have to divide it up into 10 or 15 minute sections. However I get there in the end. MaryF

GinaD profile image
GinaD in reply to MaryF

So yes, you are being reasponsible! I try.

DannyBoy1 profile image
DannyBoy1 in reply to MaryF

Very impressive Mary!

MaryF profile image
MaryFAdministrator in reply to DannyBoy1

Well thank you. MaryF

Tofino5 profile image
Tofino5

Rather than rat poison, I always viewed my warfarin as Life Giving. I either took my chance with more clots, or I took a medicine. My first DVT and PEs were not properly diagnosed so I was glad to find out what was wrong and get a med to help me live a better life :-).

I agree with Lure2 and GinaD. Being consistent can help a lot. My clinic always told me I could do anything I wanted (just about) as long as I was consistent with it, that the warfarin could be adjusted around it. Consistency can be time consuming at first, but once you get into the habits of it, it becomes easier. There are some alternatives, but they aren't for everyone, and it also depends on where you live, what is approved for use for clotting. There aren't any easy choices I'm afraid.

Lure2 profile image
Lure2

I totally agree with you Tofino! They told me to start Warfarin but I did not like the idea about rat poison - how wrong I was - it has been my lifesaver!

We learn and it can be easy as we eat so many different things on our plate every day -- it must be healthy and we must have those things at home. But the same time it is easy as we always know what to eat. I have a plate with so many beautiful colours.

I have discussed everythint with a dietician also of course so I do not miss anything important. I can eat with friends but I have to watch which sort of greens i eat and sometimes eat those later when I come home. Then the next day I can fix it when I read my INR.

If I could not selftest and do it often enough it would be dangerous for me to be on Warfarin.

I am just so lucky and I wish you all could do like me but we live in different countries with different rules and we also are different as to our APS. I understand that there are those here who have INR-numbers that do not change much and you can be lucky.

Kerstin in Stockholm

DannyBoy1 profile image
DannyBoy1

OK. I didn't mean to offend. But it really did begin as rat poison. And it still will kill the little critters!

Like most of you, I am grateful for this discovery that can help us. But who thought of giving rat poison to non-rats!?

GinaD profile image
GinaD

one doctor told me, just after I was diagnosed, that warfarin , 1st is a natural substance and drugs and extracts straight out of nature tend to interacr better with the body; and 2, warfarin has bern used for a long, long time. So we know all the side effects and long term consequences. And what are those side efects? An increased liklihood of having a major bleed. And those long term consequences? An increased chance of a major bleed as you age. So, in other words. the side effect and long term consequences are not really side effects, but a down side to the intended treatment, ( And what the doctor did not mention. Its cheaper then the newbies.)

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