How scared should I be?

[Moddeydhoo]

Hi. I am new to all this and so thankful I found this forum. Some invaluable information from a wealth of experience.
My aortic valve was replaced Feb 3 this year, so I am about 10 weeks post op. Don't ask me anything technical I don't yet have enough knowledge to answer you.
Now to the real question. I am struggling to get my INR up to the recommendation of between 2 and 3. I have a local lab and test weekly. I started on 4mg of warfarin daily and through recommendations from my cardiologist I have been increasing at 10% so that I am now up to 6mg a day. My INR is sitting at 1.39 and won't budge!!!!
Confession time. I like to have a beer and have a couple of Chang in the evening (live in Thailand) also my gf, who is an exceptional cook, does ply me with a lot of veggies.
I have read through a number of feeds and the consensus, if I am correct, is dose to diet not diet to dose. This was confirmed by my cardiologist by him saying as long as you are consistent, the dose can be adjusted.
Can anyone offer some suggestions aside from totally abstinence and withdrawing from what I consider to be a normal life.
Many of the medical journals being quoted by the medical professionals here are dated 2006 or earlier.
Thanks in advance for any guidance.

 

[Chuck C]

I have only 3 weeks of self administering warfarin, so my experience is very limited. But, I do know that some need far more warfarin than others to be in range. I am surprised that they have been so slow to raise your dosage. Only from 4mg to 6mg and you are 10 weeks out with a max INR of 1.39? Hopefully those with more experience can weigh in here, but I know that there are plenty of folks that need to take more than 10mg per day, and you may be one of those. I am clearly no expert, but I think they need to up your dosage substantially and quit messing around with 10% increases. I mean, It's been 10 weeks. I'm happy if others with more knowledge on the subject can chime in and correct me if I am wrong in my thinking.

 

[Chuck C]

Hi. I am new to all this and so thankful I found this forum. Some invaluable information from a wealth of experience.
My aortic valve was replaced Feb 3 this year, so I am about 10 weeks post op. Don't ask me anything technical I don't yet have enough knowledge to answer you.
Now to the real question. I am struggling to get my INR up to the recommendation of between 2 and 3. I have a local lab and test weekly. I started on 4mg of warfarin daily and through recommendations from my cardiologist I have been increasing at 10% so that I am now up to 6mg a day. My INR is sitting at 1.39 and won't budge!!!!
Confession time. I like to have a beer and have a couple of Chang in the evening (live in Thailand) also my gf, who is an exceptional cook, does ply me with a lot of veggies.
I have read through a number of feeds and the consensus, if I am correct, is dose to diet not diet to dose. This was confirmed by my cardiologist by him saying as long as you are consistent, the dose can be adjusted.
Can anyone offer some suggestions aside from totally abstinence and withdrawing from what I consider to be a normal life.
Many of the medical journals being quoted by the medical professionals here are dated 2006 or earlier.
Thanks in advance for any guidance.

And welcome! You have come to the right place to seek information on warfarin. I'm sure the warfarin warriors will chime in soon.

 

[user 16827]

hi, dose the diet is absolutely correct, try to keep your vitamin K pretty constant if possible and avoid
the obvious problem foods ( grapefruit juice among others )

In terms of initially raising your INR it is very common post surgery,
10 weeks is very early days it may take months, there are biological reasons for this......

factor in genetics too as some of us are more resistant to the pathways on how warfarin is absorbed, i need 15mg a day to stay in range 2.5 to 3.5

Trust me things will settle and in the meantime i personally would be a little more aggressive in your dose, @pellicle will be along soon to dial in more detail.

Welcome to the forum

 

[pellicle]

Hi and welcome aboard

seems like a few small issues with AC Therapy ... lets see if we can work through this and find your way out of the plains and into the range.

My aortic valve was replaced Feb 3 this year, so I am about 10 weeks post op. Don't ask me anything technical I don't yet have enough knowledge to answer you.

no, that's pretty much all I need to start with ... along with:

I have a local lab and test weekly. I started on 4mg of warfarin daily and through recommendations from my cardiologist I have been increasing at 10% so that I am now up to 6mg a day. My INR is sitting at 1.39 and won't budge!!!!

ok ... now may I ask which brand you're on (of warfarin please)

next I have a few other quick questions

1. do you have a pill box, preferably a 7 day one, preferably with each day of the week written on it and you start the week with your pills laid out ready? If not then please make it a priority to do this
2. do you have alarms set on your phone? I recommend that and recommend also that the pill box is placed in a spot where you'll see it often during the day and then be able to go "oh bugger, I forgot to take my pills"
3. you started on 4mg daily, were you previously ever in range? If so what happened

So now you're on 6mg, and your INR is still testing on 1.39 ... how is your INR being determined? Fingerprick with a coaguchek at a surgery, vein draw at a surgery?

please tell me your doses each day for the last 7 days, please start with the dose 7 days ago and please tell me it like this date : dose

for instance 7 days ago (here in Austraia) the date was 15/4/2021
so please write something like
15 : 4mg
16 : ??mg
...

Confession time. I like to have a beer and have a couple of Chang in the evening (live in Thailand) also my gf, who is an exceptional cook, does ply me with a lot of veggies.

thats great ... I love Chang and eating a good diet is great ... top points awarded there, give your GF a hug from me and say "thanks darling I love you cooking for me"

(no funny business because I don't want her to get the wrong idea about me)

I've had a short visit there

I have read through a number of feeds and the consensus, if I am correct, is dose to diet not diet to dose.

agreed ... but the intention is to get INR >2 but <3

so the only thing to do is raise your dose. My own dose is 7.5mg ... so depending on what you tell me with your previous doses and when you will be tested next I'll say "lets try on mine and see if it fits" (and that sort of fits into what I know).

Can anyone offer some suggestions aside from totally abstinence and withdrawing from what I consider to be a normal life.

yes ... I said it above ...

no worries.

Now its about 8pm here in Oz ... so I'll have another brandy and check back in a little while. Alternatively if you message me then I'll get an email notification

(and hat tip to @leadville for mentioning me in on this)

Best Wishes

 

[Superman]

How scared should you be?

Somewhere between, “A bus is coming and I can’t get out of the way!” and, “Did we turn off all the lights when we left for vacation?”



Okay - just having fun there. Agree with others. Kind of surprised they’re so slow to raise your dose if you been sitting below 1.5 INR for ten weeks post op. I’d hit it with a 8 - 10 mg’s and see what happens.

There is a bit of a misconception or fear of too much warfarin. It doesn’t work that way. There’s only the dose that gets your INR in range.

 

[Moddeydhoo]

First of all thanks to all in taking time to reply.
OK to answer your questions
I am on 5mg Orafin and using 2mg MAforan Split in half for a 1mg dose.
Yes I have a 7 day pill box box that I have sitting right next to my computer.
No I don't have an alarm set on my phone. How critical is the time regarding taking the dose. Typically I dose at 10pm but have been as early as 9:30 and as late as 11pm
I have never been in range and only had a visit to the hospital pharmacologist a month after last seeing the cardiologist who performed the procedure.
I have a local test clinic that draws blood. My last test was 20th. I tested a week before as I had an appointment with the local cardiologist (I don't live in Bangkok where the surgery was performed). The dose prior to the visit was 5mg a day, 35 mg a week. After the cardiologist visit he suggested upping to 40mg a week which I did as follows
From 13th April day of cardiologist visit dose 6mg (5mg Orafin and 1 mg Maforan) Test day before INR 1.38
14th 6mg (5mg Orafin and 1 mg Maforan)
15th 6mg (5mg Orafin and 1 mg Maforan)
16th 6mg (5mg Orafin and 1 mg Maforan)
17th 6mg (5mg Orafin and 1 mg Maforan)
18th 5mg (5mg Orafin)
19th 5mg (5mg Orafin)
20th 6mg (5mg Orafin and 1 mg Maforan) Tested again INR 1.39 So I have increased the daily dose to 6mg not skipping 1mg on the 2 days. If that makes sense.
21st 6mg (5mg Orafin and 1 mg Maforan)

I will test again this coming Tuesday 27th April.

I trust that is the information you need and I look forward to your views on a way forward.

 

[user 16827]

a few hours window in taking warfarin is fine.
it works over a roughly 4 day period anyways.
the half life of warfarin has a cumulative effect so once dosed you are higher than the 6mg you take once
you factor in half life...

i usually dose at 6pm and I'm often a bit out with my timing.
i too use an idiot box, there are good apps with alerts out there it's easy to forget a dose

 

[ATHENS1964]

I think that until the inr > 2, they also give heparin injections at the same time. Please correct me if I am wrong!

 

[Moddeydhoo]

I think that until the inr > 2, they also give heparin injections at the same time. Please correct me if I am wrong!

Never had an injection. I was actually very surprised when they initially sent me off on 4mg a day and said see you in 3 months!!!!

 

[pellicle]

I am on 5mg Orafin and using 2mg Maforan Split in half for a 1mg dose.

ok so you appear to be on two different brands ... that's a bad idea (wonders what moron prescribed that, the picture is getting bleak about ever getting sick in Thailand).

I have never been in range and only had a visit to the hospital pharmacologist a month after last seeing the cardiologist who performed the procedure.

WAIT ... WHAT ??

Tell me about your valve ... tell me about your operation ... basic details .

I need basic details before I go any further.

1. Age
2. surgery type (TAVR or Open Heart Surgery (did you get a big cut down the middle of your chest))
3. if #2 is "I had OHS" then (Valve Type (mechanical or tissue prosthetic))

What valve did you have because if you say a cardiologist performed your procedure then you can only mean you had a TAVR or a Stent.

I had (apparently wrongly) assumed you had OHS and a mechanical valve .

 

[Superman]

ok so you appear to be on two different brands ... that's a bad idea (wonders what moron prescribed that, the picture is getting bleak about ever getting sick in Thailand).




WAIT ... WHAT ??

Tell me about your valve ... tell me about your operation ... basic details .

I need basic details before I go any further.

1. Age
2. surgery type (TAVR or Open Heart Surgery (did you get a big cut down the middle of your chest))
3. if #2 is "I had OHS" then (Valve Type (mechanical or tissue prosthetic))

What valve did you have because if you say a cardiologist performed your procedure then you can only mean you had a TAVR or a Stent.

I had (apparently wrongly) assumed you had OHS and a mechanical valve .

Not always a matter of the prescription. It depends on whatever inventory the pharmacy happens to have in stock when a generic is prescribed.

 

[pellicle]

Not always a matter of the prescription. It depends on whatever inventory the pharmacy happens to have in stock when a generic is prescribed.

true ... but I did want to make the point that its significant to get the right stuff and know that "INR things may change" if the brand changes ...

 

[pellicle]

anyway while I wait for the information I asked about above I'll address a few things here

I am on 5mg Orafin and using 2mg MAforan Split in half for a 1mg dose.

to me its important to take unknowns out of the question, so I strongly recommend you stick with one brand and do not change it.

I read that the Maforan brand (seems to be a local one for you) has pills in 1 mg, 2 mg, 3 mg, 4 mg and 5 mg. I suggest you get a supply of 1, 3 and 5mg. From this you can nicely and economically make up the doses you'll need

Yes I have a 7 day pill box box that I have sitting right next to my computer.

excellent

No I don't have an alarm set on my phone. How critical is the time regarding taking the dose. Typically I dose at 10pm but have been as early as 9:30 and as late as 11pm

good, that's a good time as long as you do not forget it. The window of taking time is quite wide, just make sure you take daily. If you see in the morning you've missed it, then take that dose and then take the evening dose as scheduled.

I have never been in range and only had a visit to the hospital pharmacologist a month after last seeing the cardiologist who performed the procedure.

as noted above this is vexing because I don't know even if it is important that you are in range, especially if you have a TAVR valve.

I have a local test clinic that draws blood. My last test was 20th. I tested a week before as I had an appointment with the local cardiologist (I don't live in Bangkok where the surgery was performed).

Ok well one will need to be testing weekly until you are more or less stable and in range. Are you being tested with a finger stick or a blood draw? (not a trivial question)

The dose prior to the visit was 5mg a day, 35 mg a week.

Ok, I personally do not like or subscribe in any way to the "weekly dose view" ... it perpetuates the idea that you can dose all over the place and as long as it adds up to the weekly then its all good. It of course is not appropriate to take 15mg one day and then 20 mg 4 days later. People say "well of course not it has to be even ...." in which case just talk in daily doses and forget this weekly fluff.

From 13th April day of cardiologist visit dose 6mg (5mg Orafin and 1 mg Maforan) Test day before INR 1.38
14th 6mg (5mg Orafin and 1 mg Maforan)
15th 6mg (5mg Orafin and 1 mg Maforan)
16th 6mg (5mg Orafin and 1 mg Maforan)
17th 6mg (5mg Orafin and 1 mg Maforan)
18th 5mg (5mg Orafin)
19th 5mg (5mg Orafin)
20th 6mg (5mg Orafin and 1 mg Maforan) Tested again INR 1.39 So I have increased the daily dose to 6mg not skipping 1mg on the 2 days. If that makes sense.

it does and it highlights why

1. you need to be tested more often (at least weekly) to see what is hapening (and react if nothing is)
2. you need to increase your dose (as I mentioned above in my earlier reply).
3. that I recommended you move to 7.5mg

that you dropped back to two consecutive 5mg doses in the days before testing may even mean that your INR dropped (because it does that with lowered doses) from something higher to the measured 1.4. Again I suggest you remain on a consistent dose.

I would strongly suggest to you to not mix brands and to pick one (say Maforan) ... was this mix specified to you or just what the chemist shop delivered?

I will test again this coming Tuesday 27th April.

in my view that's too long a delay on testing. Is there some testing locally available?

I trust that is the information you need and I look forward to your views on a way forward.

partially, as in my earlier post I need details about your procedure and valve and age.

 

[Moddeydhoo]

Good morning. Thanks for the reply. I must admit, now I am starting to get concerned with my obvious lack of knowledge and perhaps slightly blasé attitude to the operation. I maybe put too much faith in the medical professionals here and yes getting sick in Thailand is a bad thing especially if you don't have the cash. As for insurance......ha ha ha useless as I found out to my great cost.
Enough of the waffle. To answer your recent questions.

The Maforan 2mg was the initial prescription. After seeing the pharmacologist the pharmacy gave me 5mg Orafin. The latest visit to the local cardiologist who suggested upping the dose, approved the idea of splitting the 2mg in half. (is this over the counter medicine?)

I am 57 years old. I had open heart surgery and they fitted a St Jude mechanical valve.

I said cardiologist because I assume that's the correct term for the professional.

I am being tested by drawing blood. I use a local testing clinic because it is very convenient and quick.
I quoted the weekly dose as an example of how the doctor suggested how much I should increase and I totally agree with the daily dose procedure.

The different brands were the ones supplied at different times from the same hospital pharmacy.

I was planning on weekly testing until my INR was stable. I was aware of the drop in dose prior to testing but I thought that the body "builds up" the dose and , for want of a better term, stores it in your system. I apologize for my terminology, as I stated at the beginning, this is new to me and to be honest, now a little scary. The doctors scared the crap out of me prior to and post op with tales of mortality rates and potential clotting post op. I found a lot of solace when I came across this site but it is blatantly obvious I need to take more control of my current and future management of the situation.

 

[pellicle]

Hi

I said cardiologist because I assume that's the correct term for the professional.

The person who fitted your Mechanical Valve is a cardiac surgeon, there are some types of surgery (TAVI) which are done by interventional cardiologists .... so I needed to be sure

I am being tested by drawing blood. I use a local testing clinic because it is very convenient and quick.
I quoted the weekly dose as an example of how the doctor suggested how much I should increase and I totally agree with the daily dose procedure.

so when you were discharged from hospital the hospital did not ensure that your INR was 2.0 or above before discharge?

ok ... next question are you able to afford to buy a Roche Coaguchek? If not do you have access to a blood clinic where your INR can be checked weekly?

 

[pellicle]

I am being tested by drawing blood. I use a local testing clinic because it is very convenient and quick.

would they be able to test weekly?

anyway, as a priority please immediately increase you dose to 8mg daily and test again in 4 or 5 days please.

 

[Moddeydhoo]

would they be able to test weekly?

anyway, as a priority please immediately increase you dose to 8mg daily and test again in 4 or 5 days please.

Yes I have a local blood clinic that would test daily if I wanted. No, I can't afford a self test machine.
No, they didn't make sure my INR was in range before discharging me.
Increasing the dose to 8mg is a big increase in a short time. What are the negative effects of a large increase, how soon would I see an improvement on my INR and by increasing that much, what would you say would be the change value in my INR?

 

[pellicle]

Increasing the dose to 8mg is a big increase in a short time.

it is not

What are the negative effects of a large increase

none ... it is a required stepto bring you into range ...

how soon would I see an improvement on my INR and by increasing that much

I would anticipate within a day you'll see something, probably by 3 days it will be mostly established.

To be clear I'm saying make your daily dose 8mg

This chart shows the relative risks of being at a particular INR

you are presently in the dangerous area. I don't know what people have told you about warfarin and doses but clearly 90% of it is wrong

This thread should help to ease your mind
https://www.valvereplacement.org/threads/how-long-can-you-go-without-it.887951/
are you taking aspirin now? If not then take something like 100mg daily.

 

[pellicle]

lastly do not be concerned if you think 8mg is too much ... its well within "normal" bounds. I recommend you read this thread to see the sorts of ranges of dose which exist

https://www.valvereplacement.org/threads/the-largest-daily-dose-of-warfarin.26524/