My Warfarin Blog

[carlmeek]

I wonder if anyone might be interested to read my warfarin blog?

http://warfarinblog.blogspot.com/

This blog charts my experience on anticogulants, as a 32 year old in the UK, after having heart surgery to replace a faulty Aortic Valve.

I will attempt to share my knowledge in the hope that it will help other patients, something I could have found very useful.

This exposes the mess that our healthcare system has got itself into in the UK and shows some of the misinformation spread by health professionals about the drug.

 

[catwoman]

Why the need to test 159 times in 34 weeks' time? An average of testing every 1.5 days??? That triggers a yo-yo effect -- a real disservice to YOU if you are making any adjustments in that short a time period.
You have to remember that it can take up to 72 hours for warfarin to load and to show any effects of a dosage change. Therefore, testing that frequently can wreak havoc.

 

[dick0236]

I agree with Marsha, why test so frequently. You obviosly are pretty stable. If your range is 2-3, you are in range 71% of the time.... if your range is 2.5-3.5, you are in range 71% of time.... and you are staying between 2-4 93% of time and thats great. My question would be if all the minute dosage changes are necessasry?

 

[Sarah_Louise]

Intresting read!!! I struggled with warfarin all the time i was on it (now on long term heparin) Just wondering....How come you weren't allowed to use your own machine and everyone was against it?
I'm also from the UK and when i was 13 i had my AVR, and i was given one of those exact machines by the hospital to use, i would test myself then ring my nurse/heamatologist with my reading and they would tell me what to take of warfarin,
My INR was as random as taking 23mg!! and still only getting an INR of 1.2 and then other times i would be on no or hardly any warfarin and end up with INR's of 8.0!!
Love Sarah xxxxxx

 

[carlmeek]

Thanks for taking the time to read and comment.

I knew it would be controversial, particularly the frequency of testing.

The reason I chose to test so frequently was really to challenge the incumbent beliefs about stability and to try and uncover the truth of what the INR level does on a more regular basis.

I agree that if the typical dosage calculators are followed then it would cause yo-yo effect, and that's because the calculators only ever look at a single dose. My strategy is different - i look at the range of doses and INRs over the last few days and look for a trend. I then make a dose change to arrest that change…. or often just don't bother.

My time on the drug so far has seem some very successful dosing and small dose adjustments, and it's also seen some mistakes. I will keep refining this.

I'm a software developer by trade and i'm working on a new algorithm calculator tool that will support my dosing. It's a very complex algorithm so I haven't managed to create it yet, but it's definitely on the way. It will look at a whole week's results and doses before making a dose suggestion.

I believe that the "perfect" system would be to test every single day, and to change the dosage daily making small adjustments to arrest any trend up and down. I this were followed I believe warfarin would be in range for an even higher percentage of the time.

I will continue to test very regularly and keep refining my method. Certainly regular testing doesn't do any harm, it gives a great insight into what's actually going on.

Remember that all of this is based on my statistical interest, and on the fact I don't believe warfarin to be a stable drug. Not a mainline opinion, but certainly mine.

 

[catwoman]

Thanks for taking the time to read and comment.

I knew it would be controversial, particularly the frequency of testing.

The reason I chose to test so frequently was really to challenge the incumbent beliefs about stability and to try and uncover the truth of what the INR level does on a more regular basis.

I agree that if the typical dosage calculators are followed then it would cause yo-yo effect, and that's because the calculators only ever look at a single dose. My strategy is different - i look at the range of doses and INRs over the last few days and look for a trend. I then make a dose change to arrest that change…. or often just don't bother.

My time on the drug so far has seem some very successful dosing and small dose adjustments, and it's also seen some mistakes. I will keep refining this.

I'm a software developer by trade and i'm working on a new algorithm calculator tool that will support my dosing. It's a very complex algorithm so I haven't managed to create it yet, but it's definitely on the way. It will look at a whole week's results and doses before making a dose suggestion.

I believe that the "perfect" system would be to test every single day, and to change the dosage daily making small adjustments to arrest any trend up and down. I this were followed I believe warfarin would be in range for an even higher percentage of the time.

I will continue to test very regularly and keep refining my method. Certainly regular testing doesn't do any harm, it gives a great insight into what's actually going on.

Remember that all of this is based on my statistical interest, and on the fact I don't believe warfarin to be a stable drug. Not a mainline opinion, but certainly mine.

Warfarin is a lot more stable than most people think -- as long as you are consistent in your lifestyle, which is not a bad idea to maintain good health. Yes, a wide variety of things affect it, but all in all, it's more stable than you'd think.

My main question is why test that frequently, why shell out the extra money, if testing on a less frequent schedule accomplishes the same thing: determining that the patient is indeed in range. Otherwise, it's a waste of time and money. I have more important things to do with my time and more things to use that money on. I spend about $200-$220 per year on INRatio testing strips (just got a fresh box for $220) and that comes out of my Flexible Spending Account.

To each his/her own.

 

[yotphix]

Why stop at daily testing and dose adjustments? If you are going to go that far, why not experiment with splitting the day's dose into three parts and taking one every eight hours? You could test before each dose too. The only problem is, no matter how frequently you test, the warfarin you take today, acts to interfere with the conversion of vitamin K to clotting factors the day after tomorrow or so. While I agree that more frequent than usual testing is a good thing, for a number of reasons, there is a limit to what has practical benefits and it seems to me that testing every three days would approach that limit. If Warfarin reached maximum efficacy in a matter of hours than your scheme would make more sense. It doesn't.
I do appreciate your experiment, and your willingness to share your results. If your'e up for it, I'd love to see the results of some controls against your current method, say a 6 month period of testing at the same period, but adjusting dose less frequently, and a period of high frequency testing with a very consistent diet, amount of exercise and alcohol consumption, and less frequent dose adjustments.
All the best,

Paul

 

[carlmeek]

In reply to catwoman, in my life warfarin doesn't seem to be particularly stable, but then my lifestyle isn't stable either. I travel for pleasure and business, I drink sometimes and then not for a while, my diet varies wildly, my exercise varies seasonally and randomly. I'm otherwise very healthy and not overweight.

I approach warfarin on the assumption that it's constantly going wrong and attempt to take the best course of action to keep it on track. If I can see it's trending upward over the last couple of tests, I take the lower of my usual doses rather than the higher, and this way i just nudge it back in the right direction. The key is in establishing whether a trend is a short blip or a week-or-more long one. For example during a cold/flu week i ended up taking an average dose of around 5mg and kept the INR roughly within bounds the whole time through fast dose changes. I believe the results speak for themselves, but feel there's some improving for me to do before i'm fully happy with the method.

From a financial perspective, right now the tests don't cost me anything, so i'm not wasting any of my own money. However, If this wasn't the situation, I would pay for the tests myself and do it this way anyway. After receiving the news about my heart I made the decision that anything, even the smallest thing, was worth spending money on. I guess i'm also lucky enough to not have to watch my money too closely.

In reply to yotphix, testing more than once a day would impact my life due to practicalities - whereas testing every 3,2 or 1 day at 9pm every day, is just a routine that's easy to adapt to, during the evenings relaxation period. If i'm out, or busy, or on a plane, i just take my best guess dose without testing. If I feel things are stable, i go to every 3 days, if things are rocky then daily.

I'm completely aware that it takes days to take effect, but believe you can help it in the right direction - rather than waiting for a test and then changing. For example, say you're taking 8mg daily for a week, and you test daily, and the INR goes 2.5 2.5 2.6 2.7 2.8 2.8 2.9 then you can see it trending up. As it first hit 2.8 i would have adjusted my dose down to 7mg and then 7.5 after that until a test suggests otherwise.

I don't find it difficult to do a test, just part of my 9pm daily routine, so i believe more tests are better than less. I find it sad that people end up in hospital because it went out of range and stayed there for a while. My INR has never ever been more than 4.1 and most people i've talked to have seen more than this.

I agree a control test would be the only way to be truly scientific about it, but i'm no scientist, just a person trying to take best care of myself. I'm instead going to keep refining my technique, develop a usable algorithm, and try and beat my own statistics. And there's no chance of getting diet, exercise and alcohol consistent in my life!

 

[Jkm7]

I think it would be stressful for most people to have to focus on their need to test on a near daily basis. It would make me constantly feel like a patient and not a regular person living my life. It makes being a coumadin user obsess about and make it way too big a part of who they are than is reasonable. I think emotionally it is a very bad idea and I can't find an upside.

Waste of resources, time, money, emotion.......
IMO

(I only took coumadin for a short course and did my best to not overly obsess while I as on it.)

 

[carlmeek]

That's a very interesting viewpoint. I guess everybody deals with their own psychology in their own way. I certainly respect this feeling, and understand the need not to feel like a patient.

For me, and a couple of others that I know, we feel the precise opposite. By being totally in control and on top of it, it's never a worry and you just get on with life as usual. For me, not feeling like a patient is critical too - so keeping out of hospital and away from pharmacies and doctors is critical. I want to feel I can do ANYTHING i want, and this means eat anything, drink anything, go anywhere, travel, timezone differences, try crazy food, absolutely ANYTHING. The only way I can do this as a responsible person is to test regularly.

My routine works like this: iPhone beeps up a recurring alarm at 9pm. I almost always snooze it. If I'm out an about i either re-set an alarm for 10pm or 11pm, or I just take a dose i keep in my wallet. Usually within a few snoozes I can be bothered and i do the test. It takes literally 2 minutes, can be done in a TV advert break. Job Done.

Everybody is unique, and part of my want to spread how I deal with it is simply that others may like this approach.

 

[dick0236]

.......Everybody is unique, and part of my want to spread how I deal with it is simply that others may like this approach.

This comment is certainly true and if you choose to monitor your INR this way....OK. However, understand that a lot of people come to this site with unfounded fearful notions concercerning the difficulties in dealing with warfarin. Personally, I have found the drug stable, dosing to be simple and testing convenient. I also keep a computer log of my testing/dosage results and feel that testing/dosing changes need not be minutely controled. I am attaching my own record for the past three years.
My range is 2.5-3.5 and I consider myself "in-range" whenever I get INRs anywhere within these numbers.
Jan. 2009 thru Dec. 2011 (three years) - 67 tests, 2 out of range(1-3.9 and 1-4.0). Dosing has been a constant 5mg/day(35mg/wk) during this entire time period, with the exception of two l/2 dose(2.5mg) reductions for the two "out of range" results. For much of this time period I "self-tested" every two weeks but returned to monthly "INR lab testing" about a year ago.

 

[Jkm7]

That's a very interesting viewpoint. I guess everybody deals with their own psychology in their own way. I certainly respect this feeling, and understand the need not to feel like a patient.

For me, and a couple of others that I know, we feel the precise opposite. By being totally in control and on top of it, it's never a worry and you just get on with life as usual. For me, not feeling like a patient is critical too - so keeping out of hospital and away from pharmacies and doctors is critical. I want to feel I can do ANYTHING i want, and this means eat anything, drink anything, go anywhere, travel, timezone differences, try crazy food, absolutely ANYTHING. The only way I can do this as a responsible person is to test regularly.


<snip>

Test regularly is the point.
Test almost daily is extreme to many

IMO

Certainly test whenever and how frequently you wish. I have no interest in telling you what to do but am just trying to present that it is an extreme and almost no one who is usually within their prescribed INR range does this. Some would consider it needless excessive spending. What do the test strips cost? How many tests is your machine good for? Will it 'wear out' prematurely? Does your doctor/your coumadin manager know you do this? If so, what are their opinions?

 

[carlmeek]

I understand the comment about people coming to the site fearful about how much trouble warfarin is to be on. That was me only 8 months ago. I found lots of reassurance that it was stable and no trouble, but always with the caveat that you must control alcohol, control diet, etc. sometimes people say that alcohol isn't a problem if you just have one, or that kind of thing....

This is why I am sharing my viewpoint. I want to provide reassurance for other young people like myself, who want to maintain the exact same lifestyle they had before, without any changes, but who dont want to act irresponsibly, and who are prepared to put a little extra effort into their testing. So far on the blog I have received several emails from young people thanking me for the information.

The frequency isn't me being obsessive for the fun of it. The recommendation came direct from my cardiologist, one of the most respected in the UK. I asked him what he would do if it were him.

The machine is good for as many tests as you can do. It's the same hardware, apart from the bigger screen and memory, as the tester used in the pharmacy, expected to perform thousands of tests a month. The strips are expensive, but in the UK we are lucky that they are covered under prescription.

 

[dick0236]

This is why I am sharing my viewpoint. I want to provide reassurance for other young people like myself, who want to maintain the exact same lifestyle they had before, without any changes, but who dont want to act irresponsibly, .

I hear ya. No one ever warned me about nuthin' after my surgery, so I lived hard, played hard and drank hard for twenty+ years after surgery since I was sure I would be dead by age 50 anyway.....and my INRs stayed pretty stable:confused2: 'cause you can pretty much alter your warfarin dose to fit your lifestyle. Just remember to take your pills, even after a nite out.....don't fall down and hit your head, or walk into a post:tongue2:....try not to have auto wrecks.....and DON'T get into fights. Alcohol plays havoc with a lot more than INR numbers:rolleyes2:. Having a few is always OK so long as you are not irresponsible.......IRRESPONSIBLE is the key word. BTW, I am a Recovering Alcoholic of almost 21 years. I have had a number of interesting converstation about all of this with my doctors over the past couple decades......as a doctor friend put it "you are the luckiest SOB who ever lived", and he should know, he is also in AA. Good Luck.

 

[yotphix]

Carl, your example is quite telling. You list a series of daily test results, (I don't know if that was a real example from your records, or just a random fabrication) which vary by something like the machine's margin of error. You then adjust your dose by more than 10% to compensate for a perceived change in result. It just doesn't make sense to me. I once tested three times over the course of a day just to see the results and there was a 5 tenths spread. It tells you nothing useful for dosing, except that you are in range.

I completely agree with you that once monthly is to infrequent to know whether you are consistently in range. There is too high a risk of being out of range for a long period in my opinion, and I have argued that on other threads. What I'm comfortable with, is approximately weekly testing, and always at random times and days of the week so that I don't get falsely lulled into believing that I am regularly in range. What I find, is that I AM in range. Usually between 2.3, and 2.7. In two plus years of doing this I've been low twice, and steadily increased dose for a few days to get back. That dose has now stayed there for 1.5 years. I was high once, at 3.2. I probably didn't need to, but I ate some extra spinach. When I tested again the next day (just for interest's sake) I was in range.

I will concede that a good part of the reason is that I exercise and eat consistently (I eat a rich and varied diet, with pan-ethnic range, I just consider how much of which things I'd like to eat, with consideration of what perceive the vitamin K content to be.) I also haven't touched a drop of alcohol since long before my surgery so I don't need to worry about that one. Just as you are willing to spare no monetary expense (especially if it's not your tab ) I am willing to take some care.

Ultimately though, as I said, I do appreciate that you are performing the experiment, and sharing it. And I think that there are some probably some useful data in your records.
There can't be too many daily INR sets in the world.

As the French sometimes say, (at least they do in Canada), "chacun à son goût!" (each has his taste)

 

[carlmeek]

In Reply to ****... Not sure how to reply to that one, it sounds like you've had a tough time. When I talk about being able to drink alcohol freely, i probably should have given some quantities to put it in personal context. The most I would ever drink in a week would be in the region of 6 pints of beer/ 6 glasses of wine, never liquor. I don't do anything else to abuse my body, i'm healthy, not overweight. I'm just a typical young professional with a busy lifestyle.

To YotPhix.... agree with every word you say. The results example was actually fictional, just to give an example, but of course you are right about machine variation. A more real example is here:

This was an example of me getting on top of an INR before it went too crazy. Note that I didn't react too soon, kept the 8mg until i was truly convinced it was wrong. This particular event was me feeling unwell, taking cold medication and having a glass of wine each day. Christmas holiday!

I do not in any way argue with the fact that your approach is better than mine - the stable lifestyle,diet, alcohol are all excellent and commendable. My goal is to achieve a management strategy that copes with these things not being stable.

 

[Protimenow]

I considered trying to get strips for daily testing (no more often than that), so I can see whether there WAS a measurable fluctuation from day to day, and to perhaps see the latency for warfarin. I suspect that, even on a weekly basis, the INR varies a bit from day to day. If your dose varies from day to day, it would be good to test daily to show that there IS a fluctuation based on the dosing changes.

I'm running low on strips and have gone from once a week to once every 10 days or so. My INR is still fairly 'consistent', but I am concerned with people thinking that monthly or bi-monthly is safe, as long as your test on each day was in range. Unless your life style is extremely boring, incredibly consistent, and your body never changes, your INR will probably change from day to day - the idea of always being in range (unless the range is large enough) is probably just a convenient fiction that some misguided professionals will look at to save money. (The days of the $50 lab test can easily be replaced by the $7 or less weekly test with a strip).

Also -- regarding alcohol -- sure, it's not good to drink to excess. One issue is with a component of red wines that can have an effect on INR -- but you may need a good amount to see the effects.