a brief INR management example (from my life)

[dick0236]

The graph just proves my point that 12 weeks can be safe in people that have managed their inr and have become stable.

.

The use of the words "can be safe", rather than "is safe" is what bothers me. Why would anyone want to do this? I can play "russian roulette" with a six shot revolver and five times it will be safe.....but???? With the ease of modern testing why take a chance.

 

[W. Carter]

The use of the words "can be safe", rather than "is safe" is what bothers me. Why would anyone want to do this? I can play "russian roulette" with a six shot revolver and five times it will be safe.....but???? With the ease of modern testing why take a chance.

It's not that I agree 100% in the 12 week cycle as much as I disagree with the once or twice a week testing. All the once or twice a week testing does is make us second guess our dosing and change it constantly. I do believe that when your dosing has stabilized that testing every 4-6 weeks is 100% safe with less second guessing and less dosage changing. It's the nature of the drug to be slightly unstable with all the limitations in diet, drugs, tobacco, and alcohol, etc. which constantly causes small variances. and it's our nature to want to fool around with things if we can. Now let the arguments continue.

 

[dick0236]

It's not that I agree 100% in the 12 week cycle as much as I disagree with the once or twice a week testing. All the once or twice a week testing does is make us second guess our dosing and change it constantly. I do believe that when your dosing has stabilized that testing every 4-6 weeks is 100% safe with less second guessing and less dosage changing. It's the nature of the drug to be slightly unstable with all the limitations in diet, drugs, tobacco, and alcohol, etc. which constantly causes small variances. and it's our nature to want to fool around with things if we can. Now let the arguments continue.

You, in my opinion, are right about twice/wk testing and may be right about once/wk. I am considering going to bi-weekly testing because my INR is very stable in the short term but I do notice some variances long term. I very seldom make any dosing adjustments and use slight personal changes to stay within my range(2.5-3.5). The real benefit to me is the more frequent testing allows me to see trend changes....which will occur from time to time (diet, weather, lifestyle, etc.). If I notice a trend I make a dosing adjustment that I expect to continue for some time. I did the four week drill for 40+ years with no problem....other than one very stupid personal decision and see nothing wrong with a four week schedule....but I would not go beyond that......but, like most things in life, we make our own personal choices.

For the benefit of the newbies or potential newbies to warfarin.....it is not difficult to manage the drug and live your life with minimal intteruption. Sometimes I think some of these "deep" posts scare the s--t out of folks. My advice has always been "take the drug as prescribed and test routinely" and you will have few, if any, problem.

 

[pellicle]

pellicle As far as 4.0 or a little higher being dangerous there are people with mitral valves that their inr range is 3.0-4.0, so of course their inr ranges from 2.5-4.5 quite often with no harm.

I agree, I've even placed graphs here to demonstrate the range of INR vs the incidence of problems. 4 is within that. That graph is also on my blog too.

If I had been more patient it may have "come home" (wagging its tail behind it) but as you saw it didn't and it is likely to have gone higher without my intervention. I have no reason for the 'event' that lasted 2 weeks.

My intervention was gentle, more gentle than I have read some clinics perform and was guided by more information. That's my point.

On the point of Mitral valves and INR I recently posted a study suggesting that Mitral valve INR levels were more agressive than needed, probably due to 1) lack of interest in studying lower levels 2) precautionary principle from clots created by older valve designs. They are now recommending bringing that back for some mitral valvers.

 

[pellicle]

Hi

but I disagree with this

All the once or twice a week testing does is make us second guess our dosing and change it constantly

additional data does not do that, obsessive compulsive behaviour may, or poor management practice may, but not the existence of data. I certainly don't have a problem with testing every 2nd week. I think I actually said I was considering this myself. However what 2 week testing does not do is give you more knowledge. If you found you were high did you just go high , have you been that way for 2 weeks already? Are you just coming down or just going up?

Ultimately its up to the person. I am not attempting to say "you should do this" ... the intention of my post here was to give people who have no idea an example to work with. Doing nothing may have been equally as good an option. I chose to make some subtle adjustments. My INR stayed within my preferred range and all was good.

Perhaps I should make clearer in that post that you should always be cautious in dose changes an do not make them willy nilly. It sure is clear in my other blog posts on INR. I will make that change. While I'm always saying here "steady as she goes" and "hold changes if in doubt to avoid setting up a see saw" I need to take this away from "my assumed knowledge" and make it clearer in that blog post. To quote that post:

So in this post I say:

• keep your doses steady, by this I mean take the same number mg per day. I feel there is evidence to support that alternating high / low doses lead to increasing instability
• there is a natural swing in range of INR which will occur even with the same dose. Accept this and don't try to micro-manage it

To state my overall plan again its this:
- observe and note
- if a INR is out of my range (which I used the words "comfortable with", not dangerous btw) then I start an adhoc monitor to see where its going. Mostly it goes nowhere and I do nothing.
- if its still trending high I then adjust a single dose down a bit and continue to observe

beware of the idea of a stable dose ... your body can change. Sometimes those changes are temporary and sometimes temporary can last a month or two.

 

[pellicle]

Hi

.... and it's our nature to want to fool around with things if we can. Now let the arguments continue.

lastly I wanted to thank you for the discussion, for the observations you've made and for (what essentially became) editorial input into my blog post (to rectify some of its ambiguities and silent assumptions).

Its saturday AM here and I've spent longer on my customary INR checking because in the middle of it I've done all these posts and updated my adhoc monitor example on my blog.

I agree that people have a desire to fiddle, I'm somewhat OCD myself. However I try to make algorithms to guide me which are based on trends not on single data points.

Just recently someone posted that their INR was (iirc) 2.8 every test for years. I certainly am not like that and I assume others are not either. So to me being on top of my situation (even if mostly I do nothing as a response) gives me both knowledge and confidence. You raised the point that an INR of 4 was not dangerous, and of itself I agree, however if one were to fall down the stairs (or be involved in a motor accident) being INR 4 may contribute more to head injuries in an intercranial bleed. Of course we don't expect to be in an accident, and probabalistically we will not be. Yet we wear seat belts and prefer safe cars with air bags. None of which is needed if we never have an accident.

Keeping my INR around 2.5 is my seatbelt. I hope this thread has helped anyone who manages their INR.

Lastly my dose is now up to 7mg / day again and so it seems that the duration of my event was only a few weeks. It is a matter of speculation where it would have gone to with no intervention, but I'd say to 5 based on my projections and analysis.

Best Wishes and thanks again

 

[dreamwarrior13]

LondonAndy pellicle Yeah, the Spanish bondage hotel analogy feels pretty accurate right about now. I imagine I could forgo the clinic entirely but then I also imagine my insurance wouldn't pay for certain things anymore, plus I wouldn't feel comfortable doing this whole thing TOTALLY on my own, even if I could. I was hoping they'd set up a system where I would just test myself and report the results and they'd advise me whenever I was out of range, but no dice.

Happily my last INR was 2.8 and they accepted that as in range so I'm up to four weeks, the max I'm allowed, between visits. Hopefully I can keep it that way!

 

[pellicle]

Hi

I imagine I could forgo the clinic entirely but then I also imagine my insurance wouldn't pay for certain things anymore, plus I wouldn't feel comfortable doing this whole thing TOTALLY on my own, even if I could. I was hoping they'd set up a system where I would just test myself and report the results and they'd advise me whenever I was out of range, but no dice.

you could go for a shade of grey and instead just buy a machine, test yourself and not tell them. At first (consider yourself in training) just test and document. Document is critical, because then you can show them a solid history. That's good evidence that you are reliable.

When you are going for a scheduled draw then test within an hour (don't tell them you are doing this) and document that too. It would be best to keep a spreadsheet (with one worksheet for regular weekly tests and another for lab vs your tests) or if you are a note book person a different page.

If you were to test on (say) Saturday, then test every saturday. It makes the analysis neater if the time base for samples is regular. Then if you have a scheduled lab draw which is (say) mid week, you can then get a "point in the middle" to give you an idea of the kind of variance day to day.

Over some weeks (months) you will have a good feel for how close your test is to theirs and you will have built confidence in yourself.

I expect this part (confidence) is critical to you feeling confident to do it totally on your own.

Take your time, progress your ability in small steps and you will get to where you are wanting to go. There is no rush as you have the rest of your life ;-)

PS: it is my opinion that the US Medical insurance system will crash in the next few years. Government debt is just simply out of control and there is totally no way they can ever get back out of the red.

So if you can not repay a debt you can only default on it. Which means social security is probably the first candidate for slashbacks. Plus I have not read anything good about "Obamacare" and its lack of affordability.


So maybe in the future this will become a necessary skill.

an interesting pod cast:
https://mises.org/library/charles-hu...thcare-debacle

 

[tom in MO]

Pellicle. Please stop insulting US health care and our economy. Nobody on this forum slams Australian politics or health care system.

Many people are very happy with the new health care program and it is very affordable. Many people who work part time, in small or seasonal business now have health care for the first time. But then good news does not sell advertising space.

Per your two questions:

Do you alter your dose to maintain that range or is it just what you get? Perhaps you are simply lucky? My dose is altered if it goes far out of range or stays slightly out of range for a week or two. My clinic does not make dose adjustments for small excursions out of range unless it stays that way for at least a week.

What do you propose should be done differently to achieve your results? My dose regimen and testing schedule is managed by my coumadin clinic staffed by nurses and doctors at my cardiologist's practice. The nurses and doctors are trained in cardiology but have a side specialty in anti-coagulation monitoring/dosing. All I pay for this service is a visit to the cardiologist once or twice a year and an echo every 3 years. There is not a per-use fee for warfarin management.

 

[pellicle]

Hi Tom

Per your two questions:

Do you alter your dose to maintain that range or is it just what you get? Perhaps you are simply lucky? My dose is altered if it goes far out of range or stays slightly out of range for a week or two. My clinic does not make dose adjustments for small excursions out of range unless it stays that way for at least a week.

(not being sure exactly where your answer started and my question ended, I've underlined my qn ... I hope I got it right)

that sounds good, in your previous posts I thought you had indicated your INR was always (iirc) 2.8 ... which implied it never went out of range. I thought you were fortunate and you have mentioned in other posts never being out of range and always being stable. Sounded a bit "unreal" to me, but you have now corrected my misapprehension.

What do you propose should be done differently to achieve your results?

considering your results are almost identical to mine, and your clinic is doing an admirable job I propose there is not any need for you to change anything.

I write my posts to assist people who are home testing and self dosing, and to provide a view over the fence to anyone who may be curious. I understand you have a fantastic clinic and are being cared for very well, however I have observed that is not the case for everyone. Indeed there is even a forum for just such here:
http://www.valvereplacement.org/foru...rageous-advice

Indeed there are people in the world who do not have access to clinics, I hope to help them, as the internet is a World Wide Web. So my posts in general are not aimed at you.

There is not a per-use fee for warfarin management.

Interestingly its similar here. I had to pay a once off fee of $250 to be managed indefinitely by QML (although N&S has a similar arrangement). I chose to walk away from that because I was sure I could do better (and I have) and I was uncomfortable with being late to work when they wanted me to do a test because I was "out of range" and they only found out about that 3 or 4 days after the test. Lastly I did not like getting a vein draw every (on average) 1.5 weeks in the only elbow which can provide blood. My other elbow is not a good source of a vein after a "catheter" exploration of my heart in the late 70's (which would now be called an angiogram)

Lastly (because it is of least significance) I was simply stating facts (supported by evidence) that the USA has a looming budget and perhaps health care crisis. I mention this to alert people (who may not have thought of the future implications) to the fact that maybe this isn't a fringe skill (INR testing) but may become a necessity even in the USA. I'm not sure how that qualifies for "insulting" in this case (but I take your point and don't deny I have done that in the past).

Considering those of us with currently with mechanical valves may need to think long term (especially those of us younger) I think it was actually a salient point.

If you have anything negative to say about Australian politics then by all means, perhaps we could do like so many do here in Australia - have a whinge about the Government over a beer. Criticising our system is considered healthy debate by many here.

Best Wishes

 

[twinsunnysideup]

Pellicle you are right about the US healthcare system. It will collapse. I came from a European free for all system and people like my daughter don't stand much of a chance. In the US she did thanks to high quality private medicine. In the past 10 years however, as government has taken over the system I have seen a substantial decrease in quality and accountability.

 

[dreamwarrior13]

pellicle Thanks again for the good advice. I'll think about it. I think my insurance will even pay for the kit (hopefully).

 

[Protimenow]

I've just returned to this forum and just read through this thread. I'm 24 years post-op. I am sorry to admit that I went for YEARS without testing - rather stupidly. I developed what appeared to be a wart on my face. When I finally realized that meters were available, and relatively affordable, I got one on eBay and began managing my INR. The thing on my face disappeared - apparently, this was a clot that was catching stray clots,and once I was properly anticoagulated, the thing on my face dissolved, without causing any issues.

I've been self-testing, and recording all the results, since April 2009. I've used a variety of meters - ProTime Classic, ProTime 3, InRatio and InRatio 2, CoaguChek S and CoaguChek XS and now Coag-Sense.

I've gotten some really outrageous advice from doctors. Ive had labs that mishandled my blood samples and provided results that were way different than my meter's results.

I relied on one meter, trusting that the 2.6 it was giving me ACTUALLY WAS 2.6, and had a TIA -- in the hospital, my INR was 1.7.

Although I'm guilty of not testing every week, I have often told people that THEY should. I don't care that my INR may have been stable for weeks or months - all it takes is a week or so with an INR below 2.0 (for my St. Jude Valve), and the risk of stroke goes way up. I can't understand how an Anticoagulation Clinic would be comfortable with monthly testing when there's always the possibility that a 'stable' patient couldn't go on a dietary binge and load up on green, leafy vegetables, or start taking some new whizbang supplement that's loaded with Vitamin K, and make the INR drop to dangerous levels. If it only takes a week - and perhaps less time - for a too low INR to potentially cause a life threatening event, I don't see how ANY clinic can be comfortable with monthly or less frequent testing. They just have NO control over what their patients/clients will do between tests that could put them at risk.

The cost of testing isn't all that high. Once you own your meter, the actual testing costs about $5 or so, depending on the cost of the strips and lancing device. For myself, as long as my meter tells me that my INR is above 2.1 or 2.2, I'm satisfied. If it suddenly shows a high INR - 4.0 or above, I'd keep a close eye on my INR and probably have a nice, large salad every day until it came down. If my INR shows below 2.0, I'd consider daily testing, and perhaps a slight increase in my dosage until it's back within range.

The Anticoagulation Clinics that I've gone to go by strict protocols. They make no decisions on their own. My INR has been study, so they haven't proposed any changes in my dosing. (One clinic nurse called me 'Mr. Consistent', because I tested my INR before I went to the lab for a blood draw, and I KNEW that my INR would be in range.

Fortunately, I now have enough strips so that I can test weekly until next February. I plan to self-test weekly -- and if you've got a prosthetic valve, it would be a good idea to consider weekly testing, too.

 

[dreamwarrior13]

I thought it took some time -- like, more than a week or two -- before a low or high INR (barring extremes) was likely to affect your health?

 

[pellicle]

I thought it took some time -- like, more than a week or two -- before a low or high INR (barring extremes) was likely to affect your health?

that is my understanding also. Though there are higher risk patients, like those who also have clotting / stroke histories AND have a mechanical valve. Lower INR for them is much more risky (note all the words which are based on the concept of probability).

The same is true also for high INR, its risk over threshold based not just threshold. By way of example a simple threshold would be temperature: once you go above a temperature you will burn, not simply risk burning.

Steam will burn but INR may give you a problem: the longer you expose yourself to that problem the higher the likelihood of injury.

 

[dick0236]

I thought it took some time -- like, more than a week or two -- before a low or high INR (barring extremes) was likely to affect your health?

From personal experience it took less than one week without warfarin to lead to my stroke. It probably took several days for my INR to fall to a "near normal" range that allowed a clot to form on the valve....but once the clot formed it was only a matter of time until the clot broke free and went to my brain. My reasoning may be flawed but I have gone 42 years since the stroke with absolutely no problems by simply making sure I don't go more than a day without warfarin. I liken it to playing "Russian Roulette".....you may spin the cylinder successfully a time or two but sooner or later you will blow your head off.

 

[pellicle]

Hi Dick

From personal experience it took less than one week without warfarin to lead to my stroke.

I sort of read his "barring extremes" as meaning between 1.5 and 4 ... of course totally stopping for a week is what I would call an extreme and I agree with you that is dangerous.

 

[dreamwarrior13]

Hi Dick



I sort of read his "barring extremes" as meaning between 1.5 and 4 ... of course totally stopping for a week is what I would call an extreme and I agree with you that is dangerous.

Oh yeah, this I understand. I would never go any amount of days without Coumadin if I could help it (barring some fantastic future development in which research discovers that On-X valves don't need any anticoagulation therapy after all -- at which point I would party like it was 1999).

I'm on a pretty decent streak as far as keeping in range lately -- though I had one weird spike last month, up to 3.4. No idea why it spiked but I got it back down to range within a week. I don't think I'd feel any more comfortable skipping my medication, even for a day, than I did one time when I accidentally double dosed. (Luckily my dose at the time was very low and nothing bad came of it, but still, I scared myself since I didn't know how high it might push my INR. That time it went up to 3.6 I believe.)

So if I understand things properly, extended periods of staying moderately out of range are bad because the more time you spend with too much or too little medication in your system, the more likely it is that it will have a negative effect. Extreme readings (either high or low) are also bad because, well, they're extreme. If you are a patient who is otherwise at low risk for bleeding or clotting problems, being out of range (especially for only short periods of time) is less dangerous than for someone who has other factors which make them more likely to have these problems.

Does that sound about right?

 

[pellicle]

Hi

I'm on a pretty decent streak as far as keeping in range lately -- though I had one weird spike last month, up to 3.4

that's fine .. no biggie. If you took lots of paracetamol for a few days before testing (like more than 500mg a few times a day) then your INR will quite likely be higher. It will return as soon as you stop the paracetamol.

I changed this a little ...

So if I understand things properly, extended periods of staying moderately out of range are bad because the more time you spend with too much or too little warfarin in your system, the more likely it is that it will have a negative effect. Extreme readings (either high or low) are also bad because, well, they're extreme. If you are a patient who is otherwise at low risk for bleeding or clotting problems, being out of range (especially for only short periods of time) is less dangerous than for someone who has other factors which make them more likely to have these problems.

Does that sound about right?

yes