Warfarin, weekly doses and doctors' stubbornness

[zoeker]

Hi fellas,

this thread is just to grumble a bit about the stubbornness that I'm facing here in Finland regarding INR monitoring, warfarin dosage, recommendations, care for the patient, patient independence and empowerment.

We have here two types of warfarin pills, the brand being Marevan produced by the local company Orion: 5 mg ones (magenta) and 3 mg ones (cyan). I've come up with combinations of full and half tablets of both 5 mg and 3 mg ones whereby I can achieve a 0.5 mg step change in the daily dose and I can keep thus the daily dose constant over a week and this is the way I prefer to do it in order to obtain a better understanding of what my body does to warfarin and what warfarin does to my body and in what timeframe.

Unfortunately my prescription is only for the 5 mg ones and I cannot buy the 3 mg ones. I tried talking to the doctors here in the very beginning when the warfarin therapy started after my surgery, in October, alas, to no avail. They have a software called "forsante" that works with weekly doses and tries to achieve the best possible distribution using half and full tablets of one type (5 OR 3 mg, but NOT both). The software bases its recommendation on INR measurement from the lab and the previously recommended weekly treatment plan. Should you happen to not follow the plan for some reason, everything gets skewed, there is no way to inform what the actual drug intake was. Doctors continue repeating that my diet should be fairly constant, I should avoid sudden peaks in alcohol consumption or the like due to warfarin concentration and its workings being influenced by a lot of things. Yet the very next thing they recommend is having peaks in the intake ("you take one pill on Monday, one pill on Tuesday, then half a pill on Wednesday...") because "the software does not support therapy plans with two types of tablets and that is the best we can do". I can bet that if we compare diet and dose variation, the latter's gonna trump the former's influence on the INR big time. When I try pointing this out to the doctors or nurses I get told that "I don't listen and I have a preconceived opinion"

In addition to that I bought CoaguChek and I'm monitoring my INR every week or sometimes twice per week. The monitoring from the healthcare on the other hand was, to say the least, patchy: at first after a week, then, since I was still within range - the second measurement was two weeks after the first one and the third one, me being still within range - three weeks after the second one. Next time when we meet, I am going to ask them out of curiosity what's the longest time they might consider "unnecessary to go and check because his INR has been stable for ages". I personally don't feel comfortable with checking once a month, the very half-life of warfarin (on average 40 hours) makes treatment plans lasting a month rely on assumptions, wishful thinking and have no scientific ground whatsoever.

In theory everything is supposed to be in interest of the patient, to make their life easier, empower them and make them more independent, especially when we take into consideration the fact that this is a life-long treatment. In practice what I get is an attitude of "you know nothing, we know better than you", "the application does not allow two types of tablets", "the application doesn't allow feedback with actual drug intake", "home monitoring devices cannot be trusted, they are not as accurate as the lab", "you cannot possibly self-manage, you must follow our recommendations". To be honest, this doesn't feel right.

So now I'm stuck with the 5 milligram pills. I've decided to do my best with what's available which would be to work with 1/4 tablets pieces, 2.5 or 3.7 increments or decrements on a weekly basis spread out as evenly as possible over the week to avoid big jumps like the ones I get recommended to make from day to day within a week (5 to 2.5 mg, i.e. 50%).

Rant over.

 

[pellicle]

this thread is just to grumble a bit about the stubbornness that I'm facing here in Finland

thanks for this, I'm glad that I just stayed at home in my apartment and did it myself.

This was done in Joensuu Finland

So now I'm struck with the 5 milligram pills

for some reason I thought it was just a language barrier problem that I couldn't get 1's and 3's

 

[RobThatsMe]

Is there anyway, the doctors can prescribe a 10 mg pill, it would be easier to split and more regular 5 mg dosing for you.

 

[Jeff Lebowski]

Hi fellas,

this thread is just to grumble a bit about the stubbornness that I'm facing here in Finland regarding INR monitoring, warfarin dosage, recommendations, care for the patient, patient independence and empowerment.

We have here two types of warfarin pills, the brand being Marevan produced by the local company Orion: 5 mg ones (magenta) and 3 mg ones (cyan). I've come up with combinations of full and half tablets of both 5 mg and 3 mg ones whereby I can achieve a 0.5 mg step change in the daily dose and I can keep thus the daily dose constant over a week and this is the way I prefer to do it in order to obtain a better understanding of what my body does to warfarin and what warfarin does to my body and in what timeframe.

Unfortunately my prescription is only for the 5 mg ones and I cannot buy the 3 mg ones. I tried talking to the doctors here in the very beginning when the warfarin therapy started after my surgery, in October, alas, to no avail. They have a software called "forsante" that works with weekly doses and tries to achieve the best possible distribution using half and full tablets of one type (5 OR 3 mg, but NOT both). The software bases its recommendation on INR measurement from the lab and the previously recommended weekly treatment plan. Should you happen to not follow the plan for some reason, everything gets skewed, there is no way to inform what the actual drug intake was. Doctors continue repeating that my diet should be fairly constant, I should avoid sudden peaks in alcohol consumption or the like due to warfarin concentration and its workings being influenced by a lot of things. Yet the very next thing they recommend is having peaks in the intake ("you take one pill on Monday, one pill on Tuesday, then half a pill on Wednesday...") because "the software does not support therapy plans with two types of tablets and that is the best we can do". I can bet that if we compare diet and dose variation, the latter's gonna trump the former's influence on the INR big time. When I try pointing this out to the doctors or nurses I get told that "I don't listen and I have a preconceived opinion"

In addition to that I bought CoaguChek and I'm monitoring my INR every week or sometimes twice per week. The monitoring from the healthcare on the other hand was, to say the least, patchy: at first after a week, then, since I was still within range - the second measurement was two weeks after the first one and the third one, me being still within range - three weeks after the second one. Next time when we meet, I am going to ask them out of curiosity what's the longest time they might consider "unnecessary to go and check because his INR has been stable for ages". I personally don't feel comfortable with checking once a month, the very half-life of warfarin (on average 40 hours) makes treatment plans lasting a month rely on assumptions, wishful thinking and have no scientific ground whatsoever.

In theory everything is supposed to be in interest of the patient, to make their life easier, empower them and make them more independent, especially when we take into consideration the fact that this is a life-long treatment. In practice what I get is an attitude of "you know nothing, we know better than you", "the application does not allow two types of tablets", "the application doesn't allow feedback with actual drug intake", "home monitoring devices cannot be trusted, they are not as accurate as the lab", "you cannot possibly self-manage, you must follow our recommendations". To be honest, this doesn't feel right.

So now I'm stuck with the 5 milligram pills. I've decided to do my best with what's available which would be to work with 1/4 tablets pieces, 2.5 or 3.7 increments or decrements on a weekly basis spread out as evenly as possible over the week to avoid big jumps like the ones I get recommended to make from day to day within a week (5 to 2.5 mg, i.e. 50%).

Rant over.

Greetings,

Exactly one year ago I had open heart surgery and my aortic valve was replaced with a St. Jude's mechanical valve.

In Turkey, there is only a 5 mg tablet sold under the name Warfmadin. That is why the cardiologists here refer to the Warfarin usage regimen as "one" or "one and a half" tablets; they do not make a clear adjustment in milligrams. However, as you have pointed out very well, we patients have to make precise adjustments in milligrams. However, in Turkey, it is not possible to find tablets with different dosages such as 1 mg, 2 mg, 3 mg, 4 mg, 5 mg, as in the USA or some other countries.

Although I have repeatedly explained this situation to the doctors, nothing has changed. Their attitude, as you mentioned, is "Follow what we tell you". But to put it bluntly, their recommended daily doses of half, one, one and a half or two tablets do not always meet my INR range.

So what do I do?
I bought a pill-cutting device and I can cut a 5 mg tablet into four equal pieces, so I get four small pieces of 1.25 mg each. I don't know how healthy this method is, but it's the best I can do with the available resources. In this way, I try to keep my INR between 2 and 3 according to my planned dose of Warfarin.

Of course, sometimes I go beyond the reference values. If my self-adjustment doesn't work, I have to go to a cardiologist. For example, the last time I increased my current medication regimen (7.5 mg every day), my INR was 1.85.

And do you know what the cardiologist at the metropolitan hospital where I live recommended me?
He told me to take two tablets (10 mg) a day for two days and one and a half tablets (7.5 mg) for the remaining five days and then come back for a check-up!

 

[pellicle]

I swear that the reasons for "complications" on the part of warfarin are down to doctors and "clinicians" not having a clue.

 

[pellicle]

but it's the best I can do with the available resources. In this way, I try to keep my INR between 2 and 3 according to my planned dose of Warfarin.

my hat is off to you for your resolve in the face of adverstiy.

Happily you are not like someone I know who takes 1.25mg daily

 

[Chuck C]

Greetings,

Exactly one year ago I had open heart surgery and my aortic valve was replaced with a St. Jude's mechanical valve.

In Turkey, there is only a 5 mg tablet sold under the name Warfmadin. That is why the cardiologists here refer to the Warfarin usage regimen as "one" or "one and a half" tablets; they do not make a clear adjustment in milligrams. However, as you have pointed out very well, we patients have to make precise adjustments in milligrams. However, in Turkey, it is not possible to find tablets with different dosages such as 1 mg, 2 mg, 3 mg, 4 mg, 5 mg, as in the USA or some other countries.

Although I have repeatedly explained this situation to the doctors, nothing has changed. Their attitude, as you mentioned, is "Follow what we tell you". But to put it bluntly, their recommended daily doses of half, one, one and a half or two tablets do not always meet my INR range.
View attachment 890835
So what do I do?
I bought a pill-cutting device and I can cut a 5 mg tablet into four equal pieces, so I get four small pieces of 1.25 mg each. I don't know how healthy this method is, but it's the best I can do with the available resources. In this way, I try to keep my INR between 2 and 3 according to my planned dose of Warfarin.

Of course, sometimes I go beyond the reference values. If my self-adjustment doesn't work, I have to go to a cardiologist. For example, the last time I increased my current medication regimen (7.5 mg every day), my INR was 1.85.

And do you know what the cardiologist at the metropolitan hospital where I live recommended me?
He told me to take two tablets (10 mg) a day for two days and one and a half tablets (7.5 mg) for the remaining five days and then come back for a check-up!

Having only 5mg tablets available in the country is far from ideal. Have you considered trying to order 1mg tablets from an online pharmacy? If you had 1mg in addition to the 5mg, you could combine them make any dosage work. I just have 6mg and 1mg and this works very well for me. For several months my ideal dosage was 6.5mg, so I took a 6mg and half of a 1mg. They come with a line in the middle designed to make them easy to break in half. You would probably need the cooperation from a doctor in Turkey to write the prescription and be onboard with the plan.