Home monitoring ... I'm sure I'm doing it right, but ...

[clay_from_nj]

Please folks, let's not scare people to death over their anticoag management. If we have to test weekly to be safe, since "just a few days" under-anticoagulated could cause a stroke, why not twice a week or even daily? As long as my INR is in range, my pharmacist wants me tested once a month or so. If it's a little out, she adjusts my dosage and has me test sooner. So, should I listen to my specialist pharmacist, cardiologist, surgeon, and general practitioner, who have all spent years studying medicine and keeping up on research, as well as having practical, personal experience with many patients; or, should I worry that I'm in great danger because someone on the internet told me that the advice of those professionals is wrong and dangerous?

 

[Protimenow]

Clay:

Your assumption that these medical professionals have studied anticoagulation for years, or that they're keeping up to date on anticoagulation management is just not correct. I don't mean to scare anyone -- but the research I've seen -- written by doctors and researchers who have ACTUALLY STUDIED anticoagulation management and risk assessment -- state that it isn't safe to be below range for more than a week. No, there is no need to test twice a week. No, there's no reason to fear warfarin. No, having an INR under 2.0 for a few days won't make you stroke out. But there are solid reasons for testing every week (I've occasionally gone 10 days to 2 weeks -- it's when I went 2 weeks, with an INR that was reportedly in range, but wasn't, that this lapse bit me).

It is worthwhile to respect Warfarin, and to acknowledge that it is probably necessary to stay in range (or, realistically, above the bottom of your range) so that you reduce the risks that are associated with your INR getting too low. And, yes, if your habits, diet, and dosing are consistent, there's a strong possibility that your INR will STAY in range from month to month.

HOWEVER - for the six bucks a week that it costs to self-test, for me it makes sense to test weekly, so that I can be certain that my INR is in range from week to week, and to be certain that for some reason my INR hasn't somehow slipped out of range.

The fiction that studying medicine, or studying pharmacy, or reading journals means that these pharmacists or doctors are really up to date on anticoagulation management can be a dangerous one that too many of us are more than willing to risk our lives believing.

BUT - I know that I probably can't convince those who don't want to believe in the importance of weekly self-testing -- even if it's low cost insurance against an unwanted outcome. So, I'll see if I can kick myself the next time I'm challenged to respond to this kind of stuff.

(And, again, I'm not trying to scare anyone about warfarin -- millions of people take it -- with adequate monitoring and management, many of us are still leading productive, healthy lives)

 

[pellicle]

many of us are still leading productive, healthy lives)

I've been decreasing the 'productive' part and focusing in the healthy part


... well ok, and some strawberry ice cream too

 

[Luana]

Sometimes I think we are making this INR stuff a helluva lot more difficult than it really is.....and in the process, are unduly scaring a lot of new people who are weighing valve choices, and people new to warfarin.

I've been on warfarin a long, long time and have never obsessed over INR. For the first 25 years I had vein draws every month.

Thank you. Back in the 1960s when valves were replaced the INR test didn't exist. Some of those folks are still with us today, having gone through years on no testing. Imagine that.

One of the problems with ACT mismanagement is too much testing. Testing every few days and adjusting doses that often is a recipe for disaster and never getting or staying in range, and INR becomes It's Never Right.

 

[pellicle]

One of the problems with ACT mismanagement is too much testing. Testing every few days and adjusting doses that often is a recipe for disaster and never getting or staying in range, and INR becomes It's Never Right.

as you have seemingly stated it the problem is too much adjustment, as testing will not alter your INR

EVERY article I read about anticoagulation suggests there is benefit to ne had by staying in range longer. Do you have any thing to suggest that many people tinker with it and that this causes problems?

The message therefore should be in training people how to dose and how to exersize caution in dose adjustment.

I test every week. I adjust my dose relatively infrequently.

 

[Luana]

EVERY article I read about anticoagulation suggests there is benefit to ne had by staying in range longer. Do you have any thing to suggest that many people tinker with it and that this causes problems?
<snip>
I test every week. I adjust my dose relatively infrequently.

Since such a small amount of people on ACT test at home, I don't think they're the problem. The problem with doses going up and down every few days comes from doctor's offices and ACT clinics. Your last statement is probably true for almost all who test at home and self-dose.

I've heard way too many stories of people who have a range of 2.0-3.0 get an INR of 3.2 and doc or clinic lowers dose or advise holding dose for a day or two.

 

[dick0236]

I've heard way too many stories of people who have a range of 2.0-3.0 get an INR of 3.2 and doc or clinic lowers dose or advise holding dose for a day or two.

My experience is that docs, and their lab techs, often overreact in their ACT adjustments......causing a "yo-yo" in INR......and then they are at a loss as to how to fix it....and tend to blame the patients habits for the problem. "Ya can't live with 'em, but ya can't live without 'em" so learn to be your own advocate when dealing with INR and INR professionals(??).

 

[Luana]

My experience is that docs, and their lab techs, often overreact in their ACT adjustments......causing a "yo-yo" in INR......and then they are at a loss as to how to fix it....and tend to blame the patients habits for the problem. "Ya can't live with 'em, but ya can't live without 'em" so learn to be your own advocate when dealing with INR and INR professionals(??).

Totally agree. I have a friend who takes warfarin, not because of a valve, and if she's even a tiny bit over target, clinic tells her to stop or lower her dose.

 

[pellicle]

I've heard way too many stories of people who have a range of 2.0-3.0 get an INR of 3.2 and doc or clinic lowers dose or advise holding dose for a day or two.

Sad isn't it. I can only ad my voice to that experience as one of the reasons I went to self testing was the bloody clinic was forever adjusting much dose and wanting me back for another vein draw next bloody week!

So I reckon most practitioners could use some training!

 

[Protimenow]

I get the feeling that most of us on the forum (well, the self-testers, at least), are a lot more conservative about dosing adjustments than the clinicians who are supposed to know what they're doing. Of course, you may want to consider that these 'specially trained' people may think that they won't test your INR for a MONTH, and if it's slightly out of range, they'll make adjustments so that they think that you'll be in range for that month -- and then, surprise, next month, your INR is too high or too low.

I really think that weekly testing can be very beneficial for staying in range - and when combined with minimal dosing adjustments (if at all), can be the safest way to stay in range.

(And, ****, I get the point about people who never tested. I have INR taken very infrequently for the first 15 or so years after my surgery, and got by without any major event, but now that meters are available and testing is relatively inexpensive, I am a LOT more comfortable when I can keep an eye, weekly, on my INR).