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 to 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.

 

[slipkid]

Sorry about your (the OP's) troubles here. You are right to be frustrated and having a vent.

But welcome to the world of patients. Just shutup and do what the "professionals" say, stop trying ask educating questions, pointing out mistakes, problems, issues, etc. At worst their mismanagement will either kill you or give you a stroke. SO WHAT? They are following their "protocol" and if any of that happens to you that is YOUR PROBLEM not theirs. They could care less. You questioning them and making good points makes you a "problem patient" who deserves to die.

And I thought the some of the doctors & professionals who I have had the misfortune to deal with regarding monitoring INR, managing & prescribing warfarin here in the US were bad. I'm afraid you have it even worse in Finland :-(

 

[Habana58]

I normally use 2.5mg, sometimes, 3 and 1 mg are required, but i do have them.

 

[pellicle]

3 and 1 mg are required, but i do have them.

when I chat to my friends who are doctors and pharmacists all I hear is: all patients are stupid and can't be trusted.

"oh, but you ... no, you're not stupid, I didn't mean you ... you're the exception".

perhaps there's more than one, perhaps there would be more if we weren't infantalised but were encouraged.

In my view, you want people to be on board of their own free will and committed to doing the right thing (in this case, "doing right by and for themselves"). Sadly, the most common strategy I see being used to motivate patients is that of fear. Studies on that show while it's a powerful motivator, it's not a good one for several reasons. For starters, a Google search on "why fear is not a good motivator" will bring up many points like: It creates chronic stress leading to burn out. Promotes a feeling of powerlessness. Inhibits ability to think clearly.

Makes people more likely to lie. The power of the influence of fear diminishes in strength when nothing goes wrong. Indeed, in the many autocratic regimes we see in the world, the outcomes are all pretty much negative.

 

[dornole]

I am glad that when given the choice starting warfarin, partly due to the discussions here, I got 2 mg tablets. Sure it means I have to take more pills but with splitting on the scores I have easy 1 mg adjustments.

 

[dornole]

I thought warfarin doses took a few days to take effect. For those of you who take variable doses day to day (example - 6 mg daily but 8 on weds and Saturday = 46 a week vs trying to take 6.5 mg daily for the same 46ish), does that meaningfully shift your INR day to day? Have you tested it and is there a known number of days after dose changes that you see an effect?

 

[3mm]

For those of you who take variable doses day to day (example - 6 mg daily but 8 on weds and Saturday = 46 a week vs trying to take 6.5 mg daily for the same 46ish), does that meaningfully shift your INR day to day?

I alternate between 4mg and 5mg every other day using 1mg tablets. It seems that my INR will vary perhaps 0.2 during a typical week based on some simple models of INR, metabolism, and doses. I have some evidence from occasionally taking an extra INR measurement during the week.

Note: My coagulation clinic says they see more problems with people cutting tablets than they see with the varying doses. It is easy for me to count to 5 (or to 4) when loading my daily pill containers and I normally consider the variation in INR to be inconsequential.

 

[pellicle]

Hi

I thought warfarin doses took a few days to take effect.

this is a generalisation and needs some qualifications. The short answer is "its wrong" a slightly more detailed answer is it takes a couple of days for the full and final effect to be observed.

Tell me, how many times have you yourself taken daily INR readings and observed the outcome of a dose?
As I write this in Australia its Wednesday 6am, on Sunday at about 11am I took my INR and found it was 1.9
My decision was to administer 9mg for Sunday night and resume on my steady 7mg dose. I took INR the next day (for ***** and giggles) and it was already at 2.2 ...I didn't bother checking more because I've done this so many times I'm pretty sure (more or less) what will happen.

Doing this is called "administering a bolus" and by not having a stable dose you are administering bolus every time you alter your dose.

Its like walking down a line of people where every second person shoves you and then on the other side someone shoves you back. This is not something which leads to stable in a system where its also inherently a little bit unstable.

For those of you who take variable doses day to day (example - 6 mg daily but 8 on weds and Saturday = 46 a week vs trying to take 6.5 mg daily for the same 46ish), does that meaningfully shift your INR day to day?

my observation is yes (and I've personally worked with something like 40 people and personally been involved with their INR's and personally seen (and have the charts) stark changes within a day.

Have you tested it and is there a known number of days after dose changes that you see an effect?

Here is one example (many are just like this): person was on a dose of 9mg daily you'll note an arrow pointing to a single red dot in the bar for dose (on the LEFT axis, and INR is on the other X axis) INR is shown as a line, but you can see there were no INR readings before it nor were there INR readings after it until the line.

Its important to note that all readings follow this:

1. dose taken in the PM
2. INR taken in the AM

this means that you are seeing an INR then responding to it in the evening if you choose to do so (or if it warrants it).

So we don't know what his single "steering dose did" because 3 days later it was still at the same INR (3). Since his single change from 9mg to one dose of 8mg did not appear to make a change he steered down to 8.5mg and you can see that his INR fell to below 2 then rose gradually to 2.3 where he stopped taking daily measurements.

So yes, it can take a number of days to fully see the results but equally the result from a single adjustment (and with alternating doses you are making machine gun alternating doses) you'll find it harder to predict just what the hell will happen because you're making everything complex. Some points

• the wider (wilder) the alternation the worse the variability
• half life of warfarin makes a big input to this and we don't strictly know the effect of dose variability on the actual real half life
• we are measuring INR not the actual amount of warfarin; rather it is an effect on the coagulation caused by the Vitamin K cycling system on the reactivation of 3 different points in the coagulation cascade (restricting this to the intrinsic system)

Accordingly if you make a dose alteration like the OP's (5 5 2.5 5 5 5 5) you could expect to see something like this:

where the accumulation of warfarin is modelled based on those doses you see in the bar chart.

So basically "its complex" and understanding it does not come from the simplifications (dumbing down and removing data) given to one from people who are not even remotely trained in pharmacology (and probably haven't even been interested in it since they were forced to pass tests in it during their nursing or early MD studies).


BTW, most of the people I have worked with are members here, some occasionally recommend to others to take me up on my offer to work with them most remain quiet about it (for which in case your reading I'm grateful for). It takes a lot of my time and often causes an amount of stress for me. Some (very few) are very combative and some (also few) just don't stick with regular testing and documentation. I'm not inclined to nag so ... as the kids say "Meh, whatever"

Best Wishes

 

[pellicle]

Hi

I alternate between 4mg and 5mg every other day using 1mg tablets.

such is of course a small alternation (as a percentage of dose) (and yes, I know you know that). However it is interesting to see that not everyone is the same ... here is the daily variations of one person who take 9mg daily

so INR is again on RH vertical (Y) axis and dose in mg is LHS

what caused the spike around 19 is difficult to say ... would this be better or worse with alternating data I can't be certain without a parallel universe.

 

[LondonAndy]

Like Finland, I can only get warfarin by prescription here in the UK. I can order 1mg, 3mg and 5mg tablets, precisely because of the need to make small dose adjustments. If I can find official guidelines that advise doctors to prescribe this variety of tablets I will add it here.

 

[Chuck C]

I thought warfarin doses took a few days to take effect. For those of you who take variable doses day to day (example - 6 mg daily but 8 on weds and Saturday = 46 a week vs trying to take 6.5 mg daily for the same 46ish), does that meaningfully shift your INR day to day? Have you tested it and is there a known number of days after dose changes that you see an effect?

I can say that for myself, personally, I definitely see movement within 24 hours, from one small change in my warfarin dosage. I actually have a lot of experience with this and a great deal of personal data to support this. I do martial arts sparring every Saturday- lots of physical contact. As such, I have developed a strategy of moving my INR to the lower end of my range for Saturday sparring, which I achieve by slightly tweaking my Friday dosage.

My INR range is 2.0 to 3.0. In order to get my INR to the low end of my range Saturday morning, I test on Friday and adjust my Friday dosage accordingly. My target for sparring is to have my INR at 2.0 to 2.4, otherwise I don't spar.

A specific example:

Recently, my INR was 2.8 Friday morning- at the high end of my range. My normal daily dosage is 6mg, but Friday I took only 4mg, in order to bring my INR down for martial arts. The next morning my INR was 2.2, right were I wanted it to be for sparring. After sparring I resumed my normal dosage of 6mg. I have done this more than 50 times over the past 13 months and have become very good at picking the right warfarin dosage to get me to the low end of my range. Depending on where my INR is on Friday, I will reduce my Friday dosage, typically by 1mg or 2mg, to get me to the low end of my range the next morning.