Reinforcing the need for weekly testing

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pellicle

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Hi
Protimenow;n868889 said:
... perhaps encouraging pharmacies to do INR testing, etc., and still 'expecting' doctors or trained specialists to deal with anticoagulation recommendations.

Perhaps a new president may have some concern about anticoagulation management for the masses who take warfarin.
its an interesting suggestion, but while there are millions on warfarin I suspect that the amount in any district of any given pharmacy would be low. So low that they may get strip spoilage from lack of use.
Then that's combined with the probability that most of the warfarin users in their locality are already tied into their clinic (in the USA I'm meaning) and would not be able to use that information.
Then we have the problems of training the staff (and there is plenty of evidence even on this forum of the problems of ignorance in people who actually specialise in this)
Then there is the laws which may open the pharmacy to legal damages if the person attempted to sue them for harm which came from an INR related issue.

I love the ideas of socialising things (Australia does quite a lot as does Finland) but some things just really need to be personalised ... where the person takes responsibility for themselves (or their family do).
 

Protimenow

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When I wrote this, I was anticipating a different person to be elected to be President. I don't think that this one cares. I doubt that his eventual Secretary of Health and Human Services or Surgeon General will have any interest, other than to make more money for themselves or their friends.

The pharmacies here in the United States (or at least in the Los Angeles area, where I live) have a great network of suppliers. If they are out of a particular medication, they usually get it in stock the next day. There's little reason why this couldn't be done with testing supplies - with central suppliers making the strips available for just one or two meters (the InRatio is gone, ProTime meters are of little significance for most home testing, and Coag-Sense may be on the rise), it shouldn't be that big a deal for your local pharmacies to be able to get the strips on short notice. They may be able to stock the lancets or lancing devicesas part of their regular stock -- as long as the clerks realize that there is a MAJOR difference between lancets for INR testing and lancing devices for blood glucose monitoring. Perhaps price alone for these lancing devices will help make the decision - 22 gauge lancets or lancing devices will probably always cost more than the very high volume 30 gauge blood glucose testing lancets.

But, again, somebody with a real voice and concern for regular testing has to step up and advocate for self-testing, and for doing it weekly.
 

Protimenow

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I'm reviving activity in this old thread, hoping that people who read it skip to the new posts.

I've just come across another reason that weekly testing is important.

I make up my pills, putting them into a daily pill container for the week, on Sunday. Today, Thursday, I tested my blood (I was doing a comparative test of two strip lots and one meter). BOTH meters showed me that my INR was 1.5. It was good to know that both strips gave me the same result - but not so good to see that it was 1.5.

I checked my pill box, and saw that when I made up my pills, I left out a 5mg warfarin each day. I've been taking 7 mg/day - a 5 mg pill and 1/2 of a 4 mg pill. So, I was only taking 2 mg since Sunday.

Considering that the full effects of a dose would take 2-3 days to impact INR, I'm assuming that my INR was probably low from Tuesday until today. I'm glad that I caught this error when I did -- I wouldn't have wanted an INR this low for a week or more.

I'm not going to bother with Lovenox. I'm not concerned with a clot forming in the next day or two, while my INR comes back up.

My recommendation for self-testers/self-managers -- fill your daily pill box (if you use one), then test three or four days later - IF you made a mistake when preparing your Warfarin, you'll catch the mistake before it can do harm (unless, of course, you somehow give yourself a megadose of warfarin and WANT a bleeding episode).
 

LondonAndy

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Thanks for sharing, Protimenow it is good to share our mistakes and help others avoid them. However, my surgeon personally wrote a note in my INR management book, before i left hospital, to say give Heparin/Lovenox if INR under 2.5 (my therapeutic range is 2.5 to 3.5), adding that anticoagulation clinics "just don't get" how important staying in range is. When I had a low INR and my clinic refused the injections, I went and saw him and he prescribed a sufficient supply of Heparin syringes for me to keep at home should a low INR recur.

Whilst I do take a slightly more relaxed view now and would not be concerned down to about 2.2 I think, if mine was 1.5 I would have no hesitation in taking Heparin until back in range.

My low INR was some 4.5 years ago now, and in a similar thread on here some have suggested my surgeon was overly cautious, but for me a low INR is much more concerning than a high one to the same degree.

Using a pillbox is vital for me too - taking a number of tablets everyday it can be easy to forget if I have taken something or not, but a glance at the box soon tells me. I do a pill count when I have finished loading the box for a day, just to make sure I haven't missed anything.
 

Protimenow

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LondonAndy - Heparin below INR of 2.5 seems very excessive. I get uncomfortable when my INR is below 2. I try to keep it between 2.5 and 3.0 (and sometimes a bit higher).

My INR has been around 1.5 for two or three days - this is probably the lowest that it's been since Sunday, when I started taking an incorrect dose. I have Lovenox - if it hasn't expired, but I don't plan to use it. According to a study by the Duke University Clinic, it takes at least a week, with a low INR for clots to form on the mechanical valve. I know that my INR will be back in range in two to three days. This will be inside the window where it's risky or dangerous, so I'll continue to take my normal dose and recheck in a day or two - until the INR is where I want it to be.

Your idea to count the pills in the pill box is a good one -- I do that when I make up my wife's medications - I should also do that with mine, before I put the non-prescription stuff (magnesium, biotin, prevacid) into it.
 

aussiemember

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I’ve been home testing for 10 years and a couple of years ago was having problems with nose bleeds - one day I had a nose bleed that wouldn’t stop - fortunately my husband was available to drive me to hospital to get it cauterised. It turned out my INR was 5 for some unknown reason. Since then I test weekly and have been able to stay in a very consistent range - would highly recommend it.
 

LondonAndy

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My INR has been around 1.5 for two or three days - this is probably the lowest that it's been since Sunday, when I started taking an incorrect dose. I have Lovenox - if it hasn't expired, but I don't plan to use it. According to a study by the Duke University Clinic, it takes at least a week, with a low INR for clots to form on the mechanical valve. I know that my INR will be back in range in two to three days. This will be inside the window where it's risky or dangerous, so I'll continue to take my normal dose and recheck in a day or two - until the INR is where I want it to be.
Fingers crossed you are correct.
 

Angie

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Please be careful with your INR. I've seen Dad having a lot of problems with maintaining the proper number, so I hope you take care of yourself.
 

Protimenow

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Please be careful with your INR. I've seen Dad having a lot of problems with maintaining the proper number, so I hope you take care of yourself.
Angie - thanks for your concern. My problem wasn't one of maintaining my INR in range - my dosage has been fairly consistent for many months (and, even after I adjusted it, the adjustment was minor - from 7.5 mg to 7 mg). The problem was that I clumsily omitted 5 mg of the 7 mg daily dose from my pill box.
 

Bina

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NEVER gamble with a LOW out of range INR.

Fortunately my doctor has good knowledge of INR and the deadly risks that surround low readings. In 2005, right after my surgery, I had a reading
of 1.9 and my home nurse and doctor both insisted that I go to the local ER. I was immediately given a heparin drip, was admitted for the weekend, and went home with a single Lovenox needle for the next day. The daily Coumadin pills take 2-3 days to affect INR and they had me covered for the duration. I was so glad that I listened to them when in my heart I really just wanted to stay home and avoid all the commotion.

Worth mentioning---------Fill up pill boxes without distractions going on to avoid mistakes that could possibly be very dangerous and even deadly.
If in doubt, have a spouse or partner check over your filled pill box.
My husband knows that if I am testing my INR or filling my pill box, stay away from me until I am done. This is serious stuff !!!
 

Protimenow

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Bina - thanks for your concern. I don't think this is much of a gamble (even though I had a TIA, my INR could have been below 2.0 for MANY weeks. I slightly increased my dose yesterday (from 7 to 9) and will check my INR tomorrow.If it's not above 2.0 by then, I'll revisit this issue.

In this case, NEVER, may be a bit strong...
 

pellicle

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Worth mentioning---------Fill up pill boxes without distractions going on to avoid mistakes that could possibly be very dangerous
agreed ... its one of the reasons I strongly advocate pill boxes:
  • gives you a way to check if you took it (compliance verification)
  • gives you the chance to double check that the dose is what you calculated (dose verification)
  • forces you to think when dishing it out (because you made a measurement and you have to determine what to do)
Humans love to avoid thinking, which is why its critical to set up habits which give you layers of safeguard.

*(oh, and Bina, some of us struggle with depression, its not like the struggle is ever over, its a marathon not a sprint. My point above is that I've seen too many people come to irreparable harm from drug "over doses" and I was (in a wry and dark manner) responding to someone suggesting that warfarin could be one of those drugs ... its not. There is a joke about Dark Humor likening it to sex. Personally I loved Finland because like Australians they roll around in dark humor)
 

Protimenow

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My humor, such as it is, also runs toward darkness.

In the case of my pill box - when I was getting my weekly doses ready, I just somehow left out the 5 mg warfarin. This has never happened before. After discovering this error, it probably won't happen again.

Because I fill the box on a Sunday, and tested on a Thursday, I was able to catch the error and keep myself from underdosing for a week. I'll continue weekly testing, three or four days after filling my weekly pills, to catch any errors before they can become a problem.

I don't think that depression caused me to underdose my warfarin - it was just a bit of carelessness.
 

LondonAndy

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I slightly increased my dose yesterday (from 7 to 9) and will check my INR tomorrow.If it's not above 2.0 by then, I'll revisit this issue.
I am interested in your thinking here, to increase the dose by 2mg. To my mind, based on how my body reacts to Warfarin, that would be an insufficient increase for me after 3 days of missing 5mg per day (if i remember correctly has happened here), and I would have taken a loading dose of an extra 5mg on day 1, and then an extra 2mg on days 2 and 3 before testing and hopefully returning to normal dose on day 4. I am conscious of not doing repeated large dose changes, which would cause a potential yo-yo effect in INR, but with so low a reading a one-off boost would work better for me at least.
 

Protimenow

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LondonAndy - my thinking is that, essentially, no matter how much I increase my dose today, it won't be reflected in my INR for at least two days.

I returned to 7 mg on the day after I determined that my INR was low, because the effects wouldn't be fully realized for two or three days.

The reason that I increased my dosage by an additional 2 mg on the day that I discovered the proble was that the 'half-life' of warfarin is 3 days -- which means that I may see some earlier effect of the increased dose on the 'sooner' side of the half-life. (Assuming that the effect is a bell curve, with a pretth high spike in the middle, but still some effect the day or hours before or after the half-life occurs). This may bring my INR up, out of range, a bit sooner than just using the standard daily dose.

I only increased the dose that one day -- within three or four days aftter returning to my normal dose, any spikes resulting from that one time increase would have levelled out .

Taking a 'loading dose' then increasing the dose for the next few days is asking for trouble. The loading dose will raise the INR after 2-3 days, the increased doses the next days would also raise teh INR. 'Loading doses' really won't help much (except for a possible slightly faster increase in INR from a bit of effect before half-life effects kick in). All that you'll achieve by using a loading dose, and higher than usual doses for a few days, would be an INR that is possibly off the high end of your normal range.

I didnt think of the extra 2 mg on that first day to be a loading dose. I'm looking for an INR that's in range two or three days after returning to my standard 7 mg dose. Boosting dosage for more than one day will only cause problems.

Thanks for asking.

(I've been thinking about Bina's 'Never' admonition. I don't think there's any risk of having an INR at 1.5 for a few days - but, if I was a medical professional worried about patients (or malpractice suits), I would always advise valve recipients with an INR below range to use Lovenox until the INR returns to within range - even if it's probably not necessary. I'm planning to test my INR later today, and will see if it's back in range (or close enough that I won't worry much). If it hasn't moved (which will surprise me), THEN I may consider Lovenox.)
 
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rwsp768

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Here is my story. Approximately 10 years ago I started having nose bleeds, my INR was within range this occurred three times and each time I went into my doctor who cauterized it. All three times they shot liquid cocaine in the nostril to deaden the pain, and it still hurt so bad I darn near wet my pants. My wife finally did some reserching on line and found that people on warfarin need collegian and which is found in jello, so instead of drinking coffee I switched to hot jello, within less of a month no more bleeds. Now when I blow my nose if I see any drops of blood I will again start drinking the jello.
 

trinitymcdermott

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We work with children’s hospital anticoagulation Group. There have been a few occasions of a missed dose over the last 2 1/2 years since my 13 year old son’s AVR. Recently at his dad’s, where he is responsible for administering his own medicine and was not using a pill box or alarm. He had missed enough to result in an INR if 1.2. I was beyond angry with his dad, as was his cardiologist - yes, we had to go in for an echo and his cardiologist urged us to use pill box and alarms and checking the dose was taken before bed. All of which I do - I actually watch him take the pills - I don’t want to be a “helicopter parent”, but he is 13 and not as responsible as he will be in the future, so I’m helping him learn.
Long story short - I’m so surprised they just increased the dose of coumadin for a period of time. No Lovenox. I may talk to his cardiologist about this and see if it makes sense in the future if it ever happens again.
 
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