What is your emergency plan(s) for when warfarin goes wrong?

[jamie14512]

Hi All,

I have recently had OHS on the 12th of April for a AVR, all went well and i am recovering, i am now on warfarin and starting to think ahead about how i can put plans in place for when something goes wrong, so that when the time comes i am prepared. My current plan of actions are:

If my INR goes alot below range, eg 1.3/1.4 OR i have an emergency running out of warfarin OR I have issues with bleeding
-Try contacting my anti coaugulation clinic, they are only Mon-Fri
-Call 111 (a British NHS health helpline)
-Try visiting a walk in medical centre
-Visit A&E


I'd love to hear other peoples emergency plans and how they compare and if there is more i can put in place/learn from yours.

Jamie

 

[3mm]

Visit A&E

Jamie14512 - This is funny. I'm in the USA, so I didn't know what you meant by "A&E". When I Googled it, I only found information on the A&E TV network! I then searched on "A&E England", and found "... Accident and Emergency. It is a crucial part of the hospital ...". In the USA, we say "ER", for Emergency Room. Again, I am learning on this forum!

other peoples emergency plans

I set up medication dispensers for a month at a time to avoid running out of medications when the Dr offices, Coagulation Clinic, and/or pharmacy are closed. I want at least an extra month of Warfarin stockpiled, but I don't have that yet.

I self test my INR, but my prescription and dose is controlled by a "Coagulation Clinic" (CAT) that is part of my medical system. The CAT is open 8-5 Monday through Friday, closed on holidays. I report my INR each Thursday and a specialist nurse sets my dose for each day of the following week.

If I think my INR is on a path out of range I will test again on Monday. I have a 24/7/365 phone number for a nurse within my medical system. I do not know what she would do if I called about an out of range INR when the Coagulation Clinic is closed. I suspect she would direct me to the Emergency Room; I need to learn more about this option ...

Pellicle has a lot of GOOD information and a VERY useful Google spreadsheet for tracking INR, doses, and your metabolism. This gives a useful prediction of the effect a particular Warfarin dose will have on you. I strongly recommend you talk with him. With that information and routine self testing you can deal with an INR that is out of range, or is trending out of range.

I carry a "Stop the bleed" kit with me when I leave home. I have a tourniquet, Quick Clot gauze, and a chest seal. Really anyone using power tools should have this with them, even if their INR is 1.0. For bicycling I will add in bandages, regular gauze, and tape.

 

[Protimenow]

You may be overreacting. According to a study by the Duke Clinic (I'm still looking for it), it takes 10 days (I'd only give it a week) when your INR is below 2 for a clot to form. There's little risk if your INR is under 2 for a few days.
Warfarin takes about 3 days to have full effect on your INR. You probably don't know when your INR started to drop. It usually takes a while for this to happen. It's also possible that you didn't test the right way -- if it takes more than 15 seconds or so between making the incision and putting the drop of the strip, you can get a result that's too low because your blood has already started to clot.
Before you start to worry, retest your INR. It's possible that your result may be wrong because the test wasn't run correctly. It's worth another strip just to make sure your INR IS that low.
If you go to an emergency facility, they may give you heparin to reduce/eliminate your chance of clotting. If you have warfarin, you might also take your usual dose (it DID keep you in range before, didn't it?).

I don't think I've EVER had an INR that low after starting Warfarin - it takes days - and Vitamin K - to drop your INR to 1.3. You would probably have to miss a few days of Warfarin, and perhaps eat a LOT of dark greens, or have something seriously wrong with you for it to drop this low. (If your liver had a problem, your INR would go up - I'm not aware of a physical condition that would make it DROP).

Retest, please, to confirm your result.

Unless you're a rat that's evolved so that warfarin isn't effective - warfarin shouldn't 'fail.'

 

[pellicle]

Hi

I have recently had OHS on the 12th of April for a AVR, all went well and i am recovering,

and welcome to this side!

i am now on warfarin and starting to think ahead about how i can put plans in place for when something goes wrong, so that when the time comes i am prepared. My current plan of actions are:

If my INR goes alot below range, eg 1.3/1.4 OR i have an emergency running out of warfarin OR I have issues with bleeding
-Try contacting my anti coaugulation clinic, they are only Mon-Fri
-Call 111 (a British NHS health helpline)
-Try visiting a walk in medical centre
-Visit A&E

ok ... but if you're monitoring your INR weekly (once stabilised) this is super unlikely.

I'd love to hear other peoples emergency plans and how they compare and if there is more i can put in place/learn from yours.

IMO there are only the lack of ability to get and have on hand enough warfarin so that you do not run out. So I can not emphasise enough, always have one bottle you're working from, and one in reserve. As soon as you open the reserve go refil your script.

No dithering

Best Wishes and smooth recovery

 

[dick0236]

I started warfarin in 1967 without any prior knowledge of that drug or its side effects.....and +/- 15 years before the introduction of INR. I had my only problem with the drug during those 15 years before INR. In the past 40+ years, I have had no issues (stroke or uncontrolled bleeding). Warfarin does not hide in the bushes and jump out at you without warning. My experience is:
1. TAKE THE DRUG AS PRESCRIBED.........get a pill box
2. Test routinely every week.....or two. Home test if it's available to you for the convenience.
3. Learn over time what foods, drinks, and activities have an effect on your INR and expect to change dosing a little.....or maybe not.

PS: My INR range has been 2.5-3.5 since the very beginning of my INR experience..........and I am comfortable with any INR within that range........I only get concerned if it falls under 2 or above 4.......especially under 2. Fortunately, that happens very seldom. I strongly believe that "blood cells can be replaced but brain cells can't".....I've had a stroke and know the irreversible damage strokes often leave behind.

 

[pellicle]

You may be overreacting. According to a study by the Duke Clinic (I'm still looking for it), it takes 10 days (I'd only give it a week) when your INR is below 2 for a clot to form. There's little risk if your INR is under 2 for a few days.

You don't have the URL for that handy do you?

 

[LondonAndy]

Hi @jamie14512 and welcome to this side of your surgery. Your plan looks good to me. The first few weeks you are likely to find some fluctuations with your INR as your body gets over the surgery and adjusts to life on Warfarin, so you are right to think about this now. Do you have your own meter yet, to test at home? If not, get one - they're well worth it, giving you freedom not to be tied to clinic appointments, to travel, and to maximise your time in therapeutic range and avoid complications. You may have come across this brief I post fairly regularly that explains more, and if your local health providers don't supply a meter (I think most still don't?) you can get a meter for £299* here, and then get the supplies on prescription.

My life on Warfarin started about 10 years ago. In the unlikely event your INR drops really low, they can give you Heparin injections (Lovenox in the US), which work really quickly until your INR recovers. Apart from one incident in the first few weeks, when my INR went down to 1.9, I have never had a Warfarin emergency, despite a completely random diet eating what I want when I want. I put this down to self-testing.

* You can only get it at £299 by ordering by phone, to then get the VAT medical exemption

 

[Chuck C]

According to a study by the Duke Clinic (I'm still looking for it), it takes 10 days (I'd only give it a week) when your INR is below 2 for a clot to form.

That is a pretty big thing to put out there without the underlying study to back it up. If the only support for this a memory of a study, which was read many years ago, it is hard to put much stock in this. It would be really helpful if you are able to locate this study and share it.

 

[ATHENS1964]

I make sure I always have some CLEXANE (enoxaparin sodium) heparin injections.
In case inr is <2.
I also have pills for 10 months in different places stored some at home but at work and some at friends' houses.
We have made a list of phone numbers of people taking anticoagulants so that if anyone needs help they can find pills.
Phone numbers of cardiologists and pathologists, someone will still help if you call them late at night or on a non-working day and will tell you what to do.
Phones for pharmacies ,in Greece everyone has the mobile phone number written on their sign in case of emergency (fire, flood, etc.) someone will answer.

 

[jamie14512]

Thank you all for your fantastic and detailed replies!

Yes i am definitely trying to get an extra supply of warfarin if possible, havent managed to persuade my nurse successfully yet!

I have bought a quick clost gauze and hemostatic powder, i may look into expanding the kit @3mm
with those options. thank you!


Ok so i don't need to worry too much about my INR going dangerously low.

Thats very encouraging @dick0236

Thank you @LondonAndy for your kind words. yes my INR is a bit up and down currently. Yes i've bought an inrange and have been self testing.

@ATHENS1964 I will ask my clinic about getting herapin. I will get those phone numbers saved!



Apologises i haven't got too much time to give more thorough replies, a bit short on time today. I valve everyone;s input on this forum so much, giving your knowledge and time to benefit others is very generous of you and i don't know where i would be without it, probably reading desperately under detailed info on random medical websites?

Jamie

 

[pellicle]

Athens, this is not just to you, but is indeed serving the purpose of answering this question more boradly.

I make sure I always have some CLEXANE (enoxaparin sodium) heparin injections.
In case inr is <2.

now, I'm not saying everyone should do this, but given that the On-X trial showed that median INR was 1.89 for literally years I just don't see this unless you are a known stroke risk. If you are a known stroke risk your target should be 3 not 2.5 anyway.

So I happen to like testing because I happen to like knowing. I strongly advocate test and know thyself. From my long history of frequent testing I'd like to share the following anecdotes

This is from early self testing days, the 0mg was an accident (missed dose) and by total coincidence was the day after I'd measured

two important things are worth observing

1. despite what some people here say (without providing any evidence) "you don't drop fast" ... here we see that no only did I drop from 2.5 to 1.7 resuming my dose took a little while to raise it
2. I was below 2.0 for 3 days. I test in the middle of the day and dose that night as a result of my reading so when I tested 1.5, I punched it up to 9.5mg (and there is reason on my method)

that did the trick and so when I saw 1.9 the next day I resumed the alternating dose of 7 | 7.5

Following the "when you get lemons, make lemonade" approach I have to data gathering I present another experience

one more:

this one has less opportune data because I didn't forget my dose directly after measurement

so you can see that I also became more 'blase' about measurement frequency because after years of doing this (note the spreadsheet rows) I knew myself pretty well.

Referring again to "that table" we see that there are 26.6 incidents per 100 patient years in that INR range

this would lead me to believe that would be one incident per 3.75 years or I would have an incident rate of 0.26 per year. Per week that would be 0.00511

I think that worrying about such a level of risk would stop you from ever walking across a road (far more risky). Yet I actually ride an electric scooter, a bicycle and indeed a motorcycle.

So in summary my observations are:

• INR drops for me faster than it resumes
• if the risk of a stroke is high for a person then yes, but as we know from a study which satisfied the FDA that 1.89 is no reason to administer heparin

Naturally everyone has their own levels of risk tolerance, just as I think some people are worse than little old ladies, the little old ladies in town here don't even tutt tutt me for riding the scooter (one even asked if she could take it for a ride down the footpath).

From Zorba the Greek

I look forward to any evidence based discussion on this topic, for if I'm wrong on anything I've said then that's good if someone says why and how; for then we all learn.

Lastly let me submit this slide:

clearly that didn't happen in 3 days ... this is what you will more likely suffer (and was not addressed by the On-X study) with long term (meaning years of) failure to keep INR above 2.

Best Wishes

 

[Amy]

Always interesting to look at someone else’s dosage/INR data for ‘events’ (missed doses, too high or low INR) - thanks, @pellicle.

Though not quite an emergency, I personally, when I’ve had an INR of I think it was 4.1, took 2 or 3 Vitamin K pills, and also ate more vitamin-k containing foods for a couple days, like carrot juice/fresh vegetable juice, some broccoli or spinach, etc. This seems to work well.

When I’ve had a LOW reading (after suddenly deciding it’d be healthy to eat 3 whole cups of raw broccoli a day for 3 days before remembering it’d have an effect on INR) I took 2 low dose aspirin right away; had a glass of cranberry juice, (just in case - though I’m not sure this really raises INR for me) lots of water, & didn’t drink my usual strong green tea throughout the next days (vit k)...; didn’t take my usual long walk or do any strenuous exercise... if I had a supplement I’d noticed raised my INR I’d probably take it (like fish oil, ginger, garlic.)

If i were aware of a more scientific or proven way, I’d use that; but like a lot of health things, I find myself having difficulty finding the data I’m looking for, so I end up relying on using observations of what has seemed to cause what for this body in the past...And I know people here say ‘dose to the diet’ or however it goes, but when I’m way out of range like this (especially when I was having symptoms of like, short term memory loss with the high INR) I feel safer adjusting my diet (& exercise) temporarily.

 

[ATHENS1964]

The INR can drop sharply and I have a concern.
Example I do a test on Friday and I find INR 2.4 the next Friday it is 1.7
No one knows how much it could have been in the previous days, it could have been 1.5 on the previous Tuesday, etc.
So taking a dose of heparin protects me because I might be >2 on Sunday so I might already be over a week <2
I would like your opinion,
Surely someone increases the dose of warfarin and does a test to see how much the INR is, there is concern that the INR may have been <2 for maybe 7 days?
Friday 2.4
Saturday ?
Sunday. ?
Monday. ?
Tuesday. ?
Wednesday. ?
Thursday. ?
Friday 1.7
Saturday ?
For the reason, because I don't know when I will be >2, a low dose of heparin will help me psychologically as I am protected until the INR increases and INR >2

 

[pellicle]

The INR can drop sharply and I have a concern.
Example I do a test on Friday and I find INR 2.4 the next Friday it is 1.7

Firstly, I want to be sure you're on warfarin and not Acenocoumarol, but yes, things like that can exactly happen, its uncommon and not universal, and so exactly because it is unpredictable we have to do things like gather statistics. This is also exactly why I strongly advocate for weekly testing. I also strongly advocate for keeping it all in a spread sheet and looking at the data (not with dull dead blind eyes but with the eyes of interest). I go a lot further and involve a simple data model.

There are many factors possible so I can't hypothesise every possible scenario around your example, but suffice to say that its very unlikely that on Saturday it fell to 1.0 and stayed there and then suddenly on Thursday spiked back up like a rocket launch to 1.7 from 1.

Systems just don't work like this, not without some sort of provocation be that diet, drugs, illness, alcohol ... and you should be aware of what foods or "out of the ordinary" things that occurred around it.

IF you utterly can not come up with anything, what stops you from measuring mid week? Totally doable if you ask me and you'll notice when I presented my "Adhoc samples" I measured more frequently exactly for those reasons.

No one knows how much it could have been in the previous days, it could have been 1.5 on the previous Tuesday, etc.
So taking a dose of heparin protects me because I might be >2 on Sunday so I might already be over a week <2
I would like your opinion,

well heck, if we just look at numbers it could have spiked up to uncoagulatable (IE >10) and then dropped back ... we just don't know.

Which is why if you suspect something is happening I say again "test more often".

For me personally I have never seen more than 0.7 INR units per day and certainly not without something like a missed or a double dose or drinking a gallon of grapefruit juice, eating a bunch of Vitamin K supplements ....

If the person does not have a triple redundant system then you simply can't rule out "forgot" or "forgot I took" or even "took wrong dose". Again, this is why I advocate for:

1. determine dose for the week ahead (based on an INR measurement and an evaluation of your history)
2. distribute that dose into your pill box (double check it) which is clearly labelled for the day of the week.
3. daily, take your dose, check the day, again check the dose and leave the lid up after taking

This has the following redundancy checks

• visual confirmation of taking and day of taking
• visual confirmation of wrong day taking
• confirming that you only take exactly one administration (not two or less)
• confirmation at least twice of exactly taking the correct dose (mistakes happen, despite colour coding of pills)

its a simple and proven system

Surely someone increases the dose of warfarin and does a test to see how much the INR is, there is concern that the INR may have been <2 for maybe 7 days?

I'm having to make a guess at the exact meaning of the sentence above, but in my view before changing a dose you need to have more evidence and first step is to assume its not a trend but a single event (high or low). I make an adjustment for 1 or 2 days, then resume that week on prior. IF and only IF (IFF) the INR is back where it was , then we can be more confident that its a change in need and make the adjustment again at next administration is more data driven but yes, and with a dose change you should be careful. I have a good idea that most people only make adjustments based on what amounts to nothing more than gut feel and certainly nothing data driven. In the main that may be sufficient but I don't feel confident. I don't feel confident because many people are bad with gut feeling driven cooking adjustments (add a little more of this, oh that's ruined it).

One needs to be experienced and have a good memory.

Alternatively I train people with a data driven approach. Reach out if you want to work with it.

For the reason, because I don't know when I will be >2, a low dose of heparin will help me psychologically as I am protected until the INR increases and INR >2

each to their own, but I've already covered why I don't think that is needed.

https://pubmed.ncbi.nlm.nih.gov/20598989/

Results: We analyzed 396 patients (197 in the LOW-INR group and 199 in the CONVENTIONAL-INR group). The mean of INR was 1.94 +/- 0.21 {note: this implies 1.72 was seen} and 2.61 +/- 0.25 in the LOW-INR and CONVENTIONAL-INR groups, respectively (P < .001). One versus three thromboembolic events occurred in the LOW-INR and CONVENTIONAL-INR, respectively, meeting the noninferiority criterion (P = .62). Total hemorrhagic events occurred in 6 patients in the LOW-INR group and in 16 patients in the CONVENTIONAL-INR group (P = .04).​

In my view a person does not get a stroke from being INR ~ 1.7 for a day, you get something like that for being like that for weeks.

You may be familiar with another risk assessment methodology is a Sievert; this is defined as intended to represent the stochastic health risk of ionizing radiation, which is defined as the probability of causing radiation-induced cancer and genetic damage.

Its important to understand that its probabilistic. Its non trivial, but you can read about it here. Importantly its not just about the amount of radiation, its about the duration of that (and other things).

Again I am not telling anyone what they should or shouldn't do except to say: if in doubt test and see.

Reach out if you want to have a go at what I do.

 

[Protimenow]

You don't have the URL for that handy do you?

I wish I did. I saw it a long time ago, and haven't been able to find it since. It was the Duke Clinic that put it out. I don't know which journal published it.
I try to find it occasionally.
There's possibly an early reference to in in a really old posting by me. I haven't looked through ancient archives.

 

[Protimenow]

That is a pretty big thing to put out there without the underlying study to back it up. If the only support for this a memory of a study, which was read many years ago, it is hard to put much stock in this. It would be really helpful if you are able to locate this study and share it.

Agreed. I posted the link (I think) years ago. I've been looking for it, but I'm comfortable with my memory of the report's conclusion.

 

[Protimenow]

I found my reference to the paper - years ago - and it's no longer online.

Here's the message that I sent (slightly out of context) at the time:

"Yes, you should certainly discuss this with your cardiologist or anticoagulation clinic. I don't know if the fact that you're having a procedure done increases the risk that your heart valve will throw a clot. A paper by Duke Medicine Ambulatory Division, titled "Clinical Practice Guidelines for the Management of Anticoagulation Therapy in the Ambulatory Setting" gives guidelines for managing INRs at all ranges. Appendix A of the paper recommends an increase in warfarin dosage on DAY ONE of 10-20% of the weekly dose. It also recommends an increase in the weekly dosing. The protocol does not include bridging. Here's the link to the article: http://www.gme.duke.edu/newsletters/200901January/Coag Binder 1-09.pdf.

Regarding bridging, the Duke paper said "Bridging should be considered if a patient is on Coumadin, and will be having a procedure or surgery." In other words, if your INR is low - but you're not having a procedure or surgery - you probably don't need to bridge. It also says that the "Last dose of Lovenox should be at least 24 hours prior to the scheduled procedure." This suggests that if you are self-medicating with Lovenox too close to the actual procedure, this may not be good. Unfortunately, the paper doesn't describe 'procedure.' (Is tooth cleaning a 'procedure' that may require bridging?)

The risk of a clot forming on a heart valve probably varies from individual to individual, and is also related to the type of valve. Although bridging is probably not a bad thing to do when the INR is below range, if the Duke protocol is to be believed, it may be that, for short periods below 2.0, just increasing the dosage of warfarin may be adequate protection."

The paper discussed how long a person can have an INR below 2 before there is risk of thromboembolic events.

Maybe it can be searched at the Duke Medicine Ambulatory Division using keywords?

 

[tommyboy14]

https://www.nejm.org/doi/full/10.1056/NEJMoa1501035

is this the published version of article?

 

[Protimenow]

No. It looked at the morbidity of patients who didn't comply with dosage guidelines (of course, they couldn't design the study if it put patient lives at risk), and who missed doses for a certain number of days. I'm pretty sure that this was done on human subjects who were hospitalized or went to the clinic, and determined the consequences of missing doses.

I'm not sure that they used 'animals' for the study (which would have made more sense). It wasn't about bridging. In the study that you linked, warfarin was started right after a procedure.

I'll have to search when I have the time to do it - but thanks for looking for it.

 

[pellicle]

https://www.nejm.org/doi/full/10.1056/NEJMoa1501035

this looks like the article referenced by "the prescriber" that I worked around in my blog post.

https://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html

The approach to the management of anticoagulation in patients with prosthetic valves undergoing non-cardiac surgery remains controversial. The need for perioperative anticoagulation in patients with mechanical heart valves has been questioned in a recent review. The authors argue that for every 10 000 patients with mechanical heart valves who are given perioperative intravenous heparin, three thromboembolic events are prevented at the cost of 300 major postoperative bleeding episodes​

but it is not:

https://www.nejm.org/doi/full/10.1056/NEJMoa1501035

There is no consensus on the appropriate perioperative management of anticoagulation for patients who have been receiving long-term warfarin therapy. Rational decisions about the treatment of such . . .​

which I can no longer read because I'm not at the university anymore, so I can't cite more than the above