my self management results for 2020

[pellicle]

Last photo that I upload with the salads my lunch ,

How long are the batteries laying in the INRatio?

 

[ATHENS1964]

Τhe previous batteries were from the company energizer and had a duration of about 20 measurements, the ones I have now are duracel and I have done about 30 measurements so far. There are different qualities of batteries so I think the duration also depends on the type simple alkaline or extra alkaline.
I use the device only for measurement and I have never transferred data to the computer so I have not wasted energy.

 

[Chuck C]

From your graph, it appears that you sometimes dose in 1/2mg. I am finding that currently the dosage that gets my INR in range is between 3mg and 4mg of warfarin. My 1mg tablets have a indent to allow splitting and I am leaning towards trying 3.5mg and see if that keeps me in range, rather than alternate between 3mg and 4mg. I like the idea of staying as consistent as possible, rather than alternating between 3mg and 4mg. Any thoughts on this?

 

[pellicle]

From your graph, it appears that you sometimes dose in 1/2mg

you're correct ... sometimes 7.5mg (5 + half a 3mg + 1mg)

 

[Amy]

On the phone with the ‘Coumadin clinic’ last night, I tried to convince the nurse to let me take 4.5 mg day, or 4.5 a couple days a week and 5 the others, instead of 2.5 mg one day, then 5 mg the next, when it gets a bit out of range, which is their protocol.

“What?? 4.5? There is no 4.5 mg pill! How would you do that??”

I said, “Just take a half a 5 mg one, and two 1 mg pills....”

She said she wouldn’t recommend “a whole bunch of different combinations” because it can “get very confusing very quickly.”

What???? Just write down the plan, then take it! Someone saying it’s confusing without explaining why is what is confusing!

Let me ask you, @pellicle, and other self-monitorers: which is easier and provides better results (TTR - time in therapeutic range) for you - taking say, three pills to equal a dose, like 4.5 (ex: 2.5, 1, 1) or 7.5 (5, 1.5, 1) each day, OR taking different doses each day, like 4 mg on Sunday, Tuesday, Thursday and Saturday, and 5 mg Monday, Wednesday and Friday.

And: does anyone have links to papers supporting spreading out dosage differences over the week? All I can find is a single sentence about it in this paper, in the caption for Figure 1:
https://www.aafp.org/afp/1999/0201/p635.html
Thank you!

 

[pellicle]

because it can “get very confusing very quickly.”

Remember, they deal with the General Public

taking say, three pills to equal a dose, like 4.5 (ex: 2.5, 1, 1) or 7.5 (5, 1.5, 1) each day, OR taking different doses each day, like 4 mg on Sunday, Tuesday, Thursday and Saturday, and 5 mg Monday, Wednesday and Friday.

As per my blog post I advocate for consistent doses. Not just because it's easier but because I believe my INR is that little less volatile.

 

[Chuck C]

“What?? 4.5? There is no 4.5 mg pill! How would you do that??”
I said, “Just take a half a 5 mg one, and two 1 mg pills....”
She said she wouldn’t recommend “a whole bunch of different combinations” because it can “get very confusing very quickly.”

Translation: "I don't understand basic math and you're confusing me."

My Coumadin Clinic experience is very different. They have done almost all that I have asked of them and see themselves as supporting me, rather than dictating to me. I was running low on the warfarin the hospital sent me home with so I asked the clinic to send to my local pharmacy the refill order. I told that them I would like 1mg tablets and asked if they could give me a year's worth of refills so that I don't have to keep bugging them. They did so instantly.

They do calculations and give me recommendations in terms of how much to take, but ultimately I control what I put in my mouth and have veered from their plan at times. When we next communicate I just update them, explain why I took what I did and they have always been good with it. They have also been very supportive of my self monitoring my INR and encourage it.

 

[pellicle]

All I can find is a single sentence about it in this paper, in the caption for Figure 1:

just wanted to add ... its a 1999 paper ... my blog is a more up-to-date and well referenced source. This is not to say that there is nothing in that paper, but that I believe I cover the perspective of a mech-valver on my blog with better simplicity.

 

[Amy]

a year's worth of refills

Chuck -

Yet another reason to move back to California. : ) God! I have had to fight and fight and make up INRs just to get a single month’s worth of 1 mg pills! (And even that came with protestations of “I don’t want to be responsible...” from the prescribing nurse!) I’ve spent days calling around, leaving my information at doctors offices, trying to not be denied by new PCPs, (which is apparently a thing) just to try to find someone willing to give me a prescription without stingily only giving out a few days’s worth at a time... I don’t get it. It’s not like this stuff is Valium, or Xanax, or whatever the hell the kids are taking nowadays... it has no palpable physical effect at all (to me) - I just need it to survive (assuming I’m not one of the lucky ones who’d be able to make it 27 or 37 years w/o warfarin).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4818019/Other than dazzling them with a fricking line graph, does anyone have any ideas for how to convince ‘medical professionals’ to trust you with Warfarin??

 

[pellicle]

them with a fricking line graph, does anyone have any ideas for how to convince ‘medical professionals’ to trust you with Warfarin??

Repeated consistent adherence.
I was with a clinic for months, I built a case with my doctor

 

[Superman]

Repeated consistent adherence.
I was with a clinic for months, I built a case with my doctor

I agree. You have to play the long game and have conversations, but avoid debates. Ask questions, and with your (Amy) team, I’m guessing you’ll have to find some sales tactics that make things seem like it’s your clinics idea. Watch old episodes of Columbo, “There’s just one more thing maybe you could help me understand?...”

It did take a solid year plus for my Coumadin clinic to go to home monitoring. Now, this was ten years ago. But I had already been on Warfarin for 20 plus years at that point. Home testing was relatively new.

Another approach would be to turn over your warfarin management to your primary care physician. There’s no law that it has to be your cardiologist’s office. PCP’s I find are more likely to work with and write for what you need. A lab can still make the draw and communicate the results to your primary, but any lab can draw for INR. Your primary can also write a prescription for a home tester, then it’s an issue of whether or not your insurance will cover as DME (durable medical equipment).

 

[Chuck C]

Chuck -

Yet another reason to move back to California. : ) God! I have had to fight and fight and make up INRs just to get a single month’s worth of 1 mg pills! (And even that came with protestations of “I don’t want to be responsible...” from the prescribing nurse!) I’ve spent days calling around, leaving my information at doctors offices, trying to not be denied by new PCPs, (which is apparently a thing) just to try to find someone willing to give me a prescription without stingily only giving out a few days’s worth at a time... I don’t get it. It’s not like this stuff is Valium, or Xanax, or whatever the hell the kids are taking nowadays... it has no palpable physical effect at all (to me) - I just need it to survive (assuming I’m not one of the lucky ones who’d be able to make it 27 or 37 years w/o warfarin).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4818019/Other than dazzling them with a fricking line graph, does anyone have any ideas for how to convince ‘medical professionals’ to trust you with Warfarin??

Sorry that they are making it so difficult to get your prescription. It is hard to understand their stubbornness. I'm sure eventually you will find a patient friendly PCP. If not, there is always the warfarin black market- just kidding don't do that- I can't imagine one even really exists.

 

[user 15848]

I agree with the keep it consistent plan 100%, "for me" it means 3mg/3mg/2.5mg and so on same pattern;
we are all different, have different diets and regular or irregular patterns in what we eat; so there is no one
magic bullet other than, do your best to have a "consistent" diet regarding items that interfere with Pill+INR
and TEST weekly if you can, i do it every 10 days, works "for me", after 5 years.

 

[Protimenow]

I'm strongly opposed to taking different doses on different days. One main reason for this is that, depending on the day that you test, your results will vary from day to day, because your dosage does.

Back when I was younger and more ignorant that I am today, I alternated between 5 and 2.5 - and went for a LONG time between tests.

Yes, it's easy to create practically ANY dose, if you have the right pills.

I was started, against my objections, at a 'coumadin clinic' - run by a pharmacist who didn't really know much of what he's doing. A dose of 6.5 brought my INR at the low end of the range. 7.0 (5 mg + 1/2 of a 4 mg or two 1 mg), so I made a dose of 6.75 (1/2 of a 7.5 + 2.0 + 1.0) -- the 'expert' asked why I used that dosage - I told him that 'I did it for you.' I wanted to prove that I knew what the hell I was doing, that my INR was in range, and that I can be trusted to manage my INR.

I had a cache of 4 mg pills prescribed by a different doctor, a supply of 1 mg pills, a fair amount of 7.5 and 5 mg pills, and I'm concerned that this wizard may give me static when I start to need refills. I'm happy with the requirement that I get a blood draw monthly.


Again - with the right combination of pills, you can make almost any dose - down to .25 mg.

Don't let the experts at your clinic intimidate you - it's YOUR life that hangs in the balance, so if you've read stuff here, you probably know more than the clinic - difficult things like 'what's 5 divided by 2?' or even more challenging 'what's 7.5 divided by 2?' They'll probably have to use the calculator on their phones to figure it out.

 

[pellicle]

There’s no law that it has to be your cardiologist’s office. PCP’s I find are more likely to work with and write for what you need. A lab can still make the draw and communicate the results to your primary, but any lab can draw for INR. Your primary can also write a prescription for a home tester, then it’s an issue of whether or not your insurance will cover as DME (durable medical equipment).

this is at once a good plan and an interesting topic. In Australia (of course not related to the US situation) the cardiologist is actually not involved with this at all. The surgeon is the one who sets the INR guidelines (mine quite specifically directed me to keep it between 2.2 and 3 which given what I know about the ranges and "that graph" is quite sensible), the Cardiologist is uninvolved and my regular doctor (we call them GP for short) was responsible for my prescriptions for warfarin (I take Marevan brand) and initially I was assigned to Queensland Medical Laboratories (QML) to manage my dose. They are not responsbile for the prescription writing.

So in Australia the responsibilities are split

1. Surgeon says what he wants
2. GP does follow up with compliance and testing
3. Lab does the testing

So in my own case after some difficulties I had with the convenience of testing at QML I built a case to my GP based on frustrations I had (getting to work on time, only having testing weekdays, frustrations with communication of doses {initially it was voice, moved to SMS text}, my veins were getting scarred due to frequent testing {frequent means weekly}, overseas travel making testing at the lab impossible for some weeks at a time ...) and that I already had a machine for self testing we created a plan and within a month (or so) I'd moved away from the Clinic.

All this before I was even a member here