Warfarin blues

[chickadee]

I just have to *****- I HATE warfarin! I have been getting stuck 6 different ways since June and I cannot get my INR right. I have been told about everything under the sun. Eat what you want, when you want, we'll adjust your levels. That's a lie. One nurse told me I have to eat the same things everyday. And I'm telling you for the last two weeks I have been a saint. But it doesn't seem to make a difference. My husband- Mr Perfect health totally doesn't get it. He can do as he pleases, when he pleases. And eat whatever for that matter too. No sympathy there. I will never be able to just go to a restaurant and just eat the spinach salad. I can't eat cooked greens (unless I want them everyday apparently) either. I have been unable to eat dairy for the last couple of years too. My pool of available foods, just seems to get smaller and smaller.
How are other people dealing with this? Does anyone know if I can have brewed teas- black or green. Some stuff I read says its won't affect my INR some says it does. What about alcohol. That seems to be the same story. Some literature says its ok some says its not.
I know I should just be happy to be alive, but I'm feeling like the BS is just getting too deep.

 

[pellicle]

Hi

I just have to *****- I HATE warfarin! I have been getting stuck 6 different ways since June and I cannot get my INR right. I have been told about everything under the sun.

firstly sorry to hear you've having a rough time ... secondly only believe people who are on it themselves. The nurses mean well but really its about authority, power and assertion not about facts. I have heard just plain wrong dribble out of the mouths of nurses in the past (as well meaning as they may be). They usually don't *know* and their own health does not depend on it.

Eat what you want, when you want, we'll adjust your levels.

eat what you want and don't let them over adjust your levels ... there is a natural cycle with everything ... even your body temperature has ups and downs in a range.

the trick is (which seems to elude these numbskulls) to find a level by looking at trends.

Here is a sample of my INR from this year (weekly measurements)

a clown at an INR clinic would probably try to adjust me all over the shop to try to "catch it" ... its like watching a kid doing a burnout in a car and loosing it ... they can't catch it

Here is my data from 2014 ... I used my experience to attempt to dial in a dose to observed variations at the beginning of the year ... note how wildly it varies!

notice how the variations lessened in swing when I just went back to keeping my dose stable.

The BS is deep, and the solution is simple. Find your "average" and accept a small set of swings

as I posted elsewhere ... its "average, standard deviation that matters, not todays reading"

Now, don't just look at that graph as a blur, follow along the blue line and ask questions ... ask yourself if you were at one dot, and couldn't see the next what would you expect? The answer is you can't know. If you were low (pick one of the low dots) and ate greens you may be tempted to think that it was the greens ... if you didn't you may be tempted to think it was something else. The fact is that is wrong. It is just normally varied like this. I've been looking closely at my INR for years, every theory I've found just doesn't stack up ... the answer is that its (within bounds) largely random.

Most INR managers are morons and I'd say none of them are on it themselves (so are not really dealing with anything from their own experience.

So what you want to know is "what dose you need to stay in the average" ... this question can only be answered in time with enough data. Nobody does it this way (except us who manage ourselves) so you are the only one who can get the best result for yourself.

BOTTOM LINE: if you want the standard advice then don't believe what we say ... but if you want the advice of people who are on warfarin and have lived with it for years (decades in some cases) then what we who are on it say here is "the good oil".

 

[Lawdog]

I hate Warfarin, too. But for now the alternative is a stroke. Try not to let it get you down; everyone I have spoken with about Warfarin have told me that it can take several months for INR to stabilize. I have been fortunate that my INR has stayed in range. But I am nervous about my diet. Nevertheless, I have decided to eat healthy and dose the diet. It will take time for me to figure that out. All the while, I hope that an alternative blood thinner will be approved for us valvers. Good luck!

 

[chickadee]

Thanks for your comments. Pellicle- do you self test? I have sort of been discouraged by the LPN monitoring me. She said that the monitors are not super reliable. Although their office uses a finger stick monitor too. It seems like it would be easier to do it on my own.
I think you are right, its hard for anyone who hasn't done this to understand. I'm glad I found this forum.

 

[pellicle]

Hey there

Pellicle- do you self test?

I do, and I've put together some resources on my blog. You'll find a quick video I've put together a video on getting blood consistently, which can sometimes be less than forth coming in winter.

I have sort of been discouraged by the LPN monitoring me. She said that the monitors are not super reliable. Although their office uses a finger stick monitor too. It seems like it would be easier to do it on my own.

this is just BS ... I can only say that they are worried about losing business because increasingly their business is irrelevant to more people. Just like petrol stations, when was the last time you sat in your car while a small team of people did your fuel, checked your air and your oil?

Please read this PDF and note the table of results:
http://www.cobas.com/content/dam/cob...-precision.pdf


PS: my post on the goldilocks dose http://cjeastwd.blogspot.com.au/2014...ocks-dose.html


The first paragraphs are the basics, after that it goes into more detail and support of my arguments

 

[DebbyA]

You have my complete sympathy! As you can see from the title, I had a similar struggle last year: http://www.valvereplacement.org/forums/forum/anti-coagulation/43824-warfarin-woes.


This thread has a very reasonable approach in post #5 http://www.valvereplacement.org/for...o-(or-what)-can-you-trust&p=553800#post553800

I've been self-testing for a few weeks, and find myself in range every week. When I was getting monthly tests in the office, it could be 1.8 one time and 3.4 the next, a really frustrating situation. I didn't actually do anything to stay in range. I think it just takes time.

 

[chickadee]

Thanks! This is encouraging. I'll read up on your blogs/posts.

 

[yotphix]

When I first started on Warfarin, I wasn't all over the map, I was just maddeningly below range. The supposed experts managing my dosing were timidly taking me up, with .5 mg increases every second day and a bigger dose on the 4th day, or some similar rubbish. I walked away from that, took matters into my own hands and self monitored while making much more decisive changes, consistent every day, and holding them to see the result. (I've ended up stable at 11 mg daily, so everyone is different.)
For a few years I was very consistent with my diet, but the last couple I've been all over the map with it. I gorge myself on greens at catered lunches a couple of times a week, then eat very little for a couple of days in a row. As near as I can tell, it makes virtually no difference whether I am consistent day by day.
So, don't panic, it will likely get better and better.