Self-monitoring INR from the start

[Amy]

Hey guys -

I spent the last week calling around, and also actually going places, looking for a ‘Coumadin Clinic,’ or a PCP that knows anything at all about managing/adjusting INR (and who maybe seems open to eventually ‘letting’ me self-manage).

Holy crap - the struggle is real.

I’m not feeling great about coming home from surgery, still likely unstable, and having to rely on people who may not know what they’re doing, to keep me in range.

So - I want to ask - did you have your own INR home monitor right from the start, and
did you use the algorithms that are linked to on this site right from the start? How did that go? How long did it take till you came to just know by how much to adjust their dose?

Despite spending hours on the phone with my insurance company and reading through the ‘benefits book’, I also still can’t tell whether a monitor partially covered by them would be mine to keep, & how it works with getting replacement strips and lancets.... So I’m thinking about just getting a (non reimbursable) monitor from eBay (or a medical device company, if I can find one any cheaper than Wilburn). Did anyone do this? Were you fine without receiving any particular training? Are YouTube vids & tips from you folks here enough?

On a related note - and I know there are other factors involved - when/how often do you adjust vitamin K intake rather than warfarin dose; and how does that work for you - does it just set off a rollercoaster, & it’s better to just keep that stable/not adjust diet?

Also, when have you found that not adjusting the dosage, but simply letting it work itself out, is the best method?

Thank you so much!!! Less than two weeks to go! (My surgeon’s been showing up in my dreams for the last week already...)

 

[Amy]

This is one of the algorithms I found, posted by vivekd, from American Family Physician in 1999. Warfarin Therapy: Evolving Strategies in Anticoagulation

No updates to speak of, that you guys know of?...

 

[MdaPA]

did you have your own INR home monitor right from the start?

You may find if you go through insurance, it might take a few weeks/months after your surgery to get setup and receive your device and supplies. If you buy without going through insurance then you can test at home right away.

Despite spending hours on the phone with my insurance company and reading through the ‘benefits book’, I also still can’t tell whether a monitor partially covered by them would be mine to keep, & how it works with getting replacement strips and lancets.

Usually if you go through your insurance's in-network benefits, you are renting the INR device from a monitoring service (e.g. BioTel Heart) and you are sent the supplies (e.g. test strips, lancets, etc) as you need them. You then have to call your results through to this monitoring service which acts as a middle-man who then sends the results to your doctor/clinic. This route is usually more costly because you are using a service versus purchasing everything you need from a 3rd party (e.g. e-Bay, Wilbuorne).

If you have and use your insurance's out-of-network benefits, then you may be able to purchase from a 3rd-party and your insurance may cover some of the cost (less deductible/co-insurance) of purchasing the device and supplies without having to go through a monitoring service but you then own the device.

Test routinely (e.g. weekly), don't miss a dose, and make small adjustments in your dosage when needed.

Here are some related posts where you can find more details:

Roche Coaguchek XS
Revisiting Post of Home Monitoring
Test Strip Supplier?

On a related note - and I know there are other factors involved - when/how often do you adjust vitamin K intake rather than warfarin dose; and how does that work for you - does it just set off a rollercoaster, & it’s better to just keep that stable/not adjust diet?

As you will hear from others, you "diet the dose, not dose the diet". This means that you change your dose instead of changing your diet if your INR is not in range. You can "try" to be somewhat consistent when eating foods high in vitamin K knowing that sometimes you wont and that there are other things that can impact your INR.

Were you fine without receiving any particular training? Are YouTube vids & tips from you folks here enough?

Yes, videos are very helpful and may be all that you need. If you go through insurance, they might send a nurse to your house to show you how to use it.

Here are videos on 2 popular devices:

How to Use CoaguChek XS for INR Monitoring
Coag-Sense PT2 PT/INR Self-Testing Training Video

 

[ATHENS1964]

It is very easy to learn to use it, after watching the video a few times and doing 2-3 measurements you will be ready, Do not worry you will have a price range from your doctor example 2-3 it is easy to be within this range . After 2 weeks I did not talk about it with my doctor again.

 

[Amy]

Thank you mdaPA and Athens1964!

So...., just as an example - is there anything about this item that seems sketchy?

https://www.ebay.com/itm/NEW-Roche-...:QZkAAOSwQjNgUzJg&LH_BIN=1&LH_ItemCondition=3
And how does it work on eBay with ‘make an offer’? Do sellers often do that - accept a lower offer?

Any help would be great. Thank you.

 

[pellicle]

Hi

Holy crap - the struggle is real.

yes, in the USA it actually is ... in Europe they encourage it. Ironic isn't it.

I’m not feeling great about coming home from surgery, still likely unstable, and having to rely on people who may not know what they’re doing, to keep me in range.

well while we all have complaints (me included) its actually not hard to do (keep in range) so even a clinic can manage it 70% of the time.

To be honest at this point they'll now a 5hitton more about it than you will and so especially coming directly out of surgery you (in my view) are well off to just let them manage it till you get on your feet.

Did you read my blog post here:
http://cjeastwd.blogspot.com/2014/05/inr-management-goldilocks-dose.html
I wrote that after joining this forum and having self tested for some time (I started self testing in 2012).

I came to it slowly because until I'd got my valve I had put zero thought into the management of warfarin (that may seem odd, but I only research stuff that directly relates to me or my interests and am not an obsessive personality type). So when I left hospital I was being managed by a clinic (which I must say is done weridly here in Australia because our medical system is oriented to event management rather than management of chronic things.

I recommend you glance through that above article to get a feel for objectives and reasons; and then read this one:
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
that one is written to be a reference as well as a guide, perhaps it needs a restructure.

I believe that it is a topic that needs to be taken seriously but is not actually difficult >once you get the ideas clear in your mind<

Anyway, I PM'd you earlier so respond to that if you wish.

Hit me up with any questions after reading those.

Lastly if you are this point are saying to yourself after reading that "its a bit much right now" then I encourage you to ease back and let the "system" take care of you for now and move towards that when you feel able to.

The system is not bad, its just the for those who like to do things themselves this is better (in time).

Best Wishes

 

[Amy]

Thank you. I’ve read your blog posts (multiple times) but will read them again. I’m sure something new will jump out at me, now that I’ve assimilated more of the very basics.

Still have tons of questions which I wish could be answered now, but may need to just be answered by personal experience.

I got your pm - just hesitant because trying to get answers on the phone this week has only led to MANY people getting angry at me (for asking questions no other patients seem to ask them). Sigh. You wouldn’t do that to me, would you pellicle? ; )

 

[Unicusp]

Hello Amy. I share your frustration. I've gone thru similar conversations over the past few weeks. It is essentially a rigged system in the US where they do not allow or discourage patients from self monitoring. If you want insurance to cover any costs, you must use a "service". In quotes, because in my opinion they perform no service. They are a middleman adding to the cost structure. Calling in your results to a service so that they can then call them into your Doctor is crazy. It is simpler dealing direct with your Doctor and ordering your own supplies.
Roche made a deal with the FDA where only Doctors or services may buy their meter (Coaguchek). The services then buy the meters and charge a rental/lease fee for your usage, directly to the Insurance company. I'm still waiting on a quote, but I've read that they charge up to $1k/month, and you never get to keep the meter.
So, your choices are to buy a used or older model new unit (Coaguchek) on eBay or buy a new meter (Coag-Sense) from Wilburn for high price, or buy a new one from a liquidator at much lower cost on eBay. And then buy the test strips and other supplies (Lancets/alcohol prep pads) from Wilburn (best price right now). This second option is what I did. So, I got a years supply of test strips and a new meter for less than $500.. My insurance deductible is $500 with max out of pocket around $9k, so if I used a service, it might cost me $2k/year.
This is one example why healthcare costs are insanely out of control in the US. This would be a great class action lawsuit too. And major savings back to insurance companies, customers, shareholders etc.. But the insurance companies don't seem to care. Very odd.

 

[Protimenow]

I've gotten most of my meters and strips on eBay. Other than one that was As-Is, or one that stopped working after a few years, I've had no issues with the meters. Vendors usually give fairly honest descriptions of their products. You can get one with a return guarantee.

Your INR will probably be up and down for a few months after your surgery, so frequent testing may just feel like racing a moving target.

Learning curve on the meters isn't very steep.

I can't speak for Pellicle, but from what I've seen, if you heed his advice, treat him with respect, you shouldn't have any problems.

You should be able to self-test, and with some help on this site, self-manage dosing.

This isn't magic. You can do it.

 

[dick0236]

This is one of the algorithms I found, posted by vivekd, from American Family Physician in 1999. Warfarin Therapy: Evolving Strategies in Anticoagulation

No updates to speak of, that you guys know of?...

This algorithm is the one I keep around "just in case". It is simple to follow and it takes the mystery out of INR management.

 

[pellicle]

Pellicle, but from what I've seen, if you heed his advice, treat him with respect, you shouldn't have any problems.

well personally I think we should all treat each other with respect.

(*or have I got some other sort of rep??)

 

[pellicle]

Sigh. You wouldn’t do that to me, would you pellicle? ; )

not at all, and to be honest I find voice easier because (despite what people think) "spoken tone" does not come across well in plain text (even with emoji's ;-) )

 

[pellicle]

because trying to get answers on the phone this week has only led to MANY people getting angry at me (for asking questions no other patients seem to ask them).

out of interest have you asked those questions here?

certainly with respect to how "things are done" where you live is out of my depth, but many members here (Dick, Superman to name a couple) have good experience with local conditions.

if there was something specific about INR management then I can try to answer that.

 

[MdaPA]

If you want insurance to cover any costs, you must use a "service".

Depending on your insurance plan, you may not need to use an INR management service (e.g. BioTel Heart). For example, if you have out-of-network benefits, then you may be able to get partial/full reimbursement for purchasing a device and supplies without being tied to a service.

because in my opinion they perform no service.

The service they perform includes renting you a device, training, periodically sending you supplies along with technical support. You will also get notified if there is a recall which has happened. They also require you to call in your results for compliance reasons which they then in-turn relay to your Dr./clinic.

Some people would rather save some money and get the device and shop for supplies on their own (that would be me!) but there are others who prefer the convenience of a service (that would be my wife and she wins!). It's like any service right? e.g. some like to save money purchasing and changing their own car oil and filter and there are others who like paying more money for a service/garage to do it.

They are a middleman adding to the cost structure. Calling in your results to a service so that they can then call them into your Doctor is crazy. It is simpler dealing direct with your Doctor and ordering your own supplies.

Yes, on the surface it does seem crazy and an unnecessary step but they require this for compliance reasons to make sure you are testing. I guess there are some folks that become forgetful or are reluctant to self-test and the service provider might be somewhat liable. In fact, I even know someone who does not have a self-test meter and is very forgetful and reluctant to routinely go to the lab for her INR testing!

Roche made a deal with the FDA where only Doctors or services may buy their meter (Coaguchek).

The FDA approved the CoaguChek XS System for use by professional healthcare providers for INR testing while the Coag-Sense PT INR Monitoring Device was cleared for both professional and patient self testing. This might have something to do with why Roche requires going through a service for using a CoaguChek XS?

I'm still waiting on a quote, but I've read that they charge up to $1k/month

$1k/month seems high to me. My wife uses BioTel Heart service as required through her in-network insurance benefits (CIGNA) and tests using a CoaguChek XS. Although she has not been billed for almost a year now since they acquired the service from CareCentrix, CareCentrix was billing her insurance company $101.43/month (which also was the in-network covered amount). Her responsibility (co-insurance) was then $10.14/month after her deductible for all the benefits of the service.

 

[pellicle]

The FDA approved the CoaguChek XS System for use by professional healthcare providers for INR testing while the Coag-Sense PT INR Monitoring Device was cleared for both professional and patient self testing. This might have something to do with why Roche requires going through a service for using a CoaguChek XS?

very interesting, thank you for that point, it explains a lot.
I just finished watching Dallas Buyers Club. This was an interesting bit of history which I had not known before. AIDS was the big thing back when I was doing my Biochem degree, but then I only studied it from the viral side (not the organisational organism virus side that it seems the FDA and Pharma can be)

This raises the question of how patients self testing can be allowed by the insurance company ... legally speaking

 

[Superman]

@MdaPA seems to really have the home monitoring in the US covered and matches right up with my experience as well. I send an email with my results. They send supplies as needed. My cardio threatens my life by refusing refills if I don’t pay them for annual echos. I pay about $11 a month for supplies for home testing and review, although billing is such a mess I think it falls under their write off threshold, because I can’t remember the last time I got a bill for it.

For my first 20 years on warfarin, it was lab draws and they were pocket change out of pocket for each test. It was just a hassle making time to get there and wait in standby for a quick poke.


I also echo pellicle’s thoughts. Don’t fight the lab too soon. Remember that many times we share horror stories in here. Most of the time it’s a non-event. They draw, you’re likely in range. If not, your dose is adjusted. Generally, they don’t mind your feedback. Especially if you have an idea if what might have changed your reading (took ibuprofen, had spinach salad all week, etc). It’s normally a conversation. Once in a while you’ll run into someone incompetent. True with anything.

 

[Amy]

Superman, thank you for your two cents. You’re right, and I know, and constantly remind myself not to ‘fight the lab too soon’. But... but.... the lab I FINALLY was able to make an appointment at, for the week after surgery - - the woman who ‘runs’ it said they have hundreds of mechanical valve patients they test (which in itself I’m skeptical about) and that they ALL only need to test (either at home or coming in to the lab) once every * two to four weeks * as long as they’re stable. I said, “you mean every week, right? For mechanical valve patients at least?” She got a TONE and reiterated that testing that often wasn’t necessary for any of her patients.....

Hmm.

Guess I have another reason to get my own INR monitor like NOW. lol

 

[Superman]

Superman, thank you for your two cents. You’re right, and I know, and constantly remind myself not to ‘fight the lab too soon’. But... but.... the lab I FINALLY was able to make an appointment at, for the week after surgery - - the woman who ‘runs’ it said they have hundreds of mechanical valve patients they test (which in itself I’m skeptical about) and that they ALL only need to test (either at home or coming in to the lab) once every * two to four weeks * as long as they’re stable. I said, “you mean every week, right? For mechanical valve patients at least?” She got a TONE and reiterated that testing that often wasn’t necessary for any of her patients.....

Hmm.

Guess I have another reason to get my own INR monitor like NOW. lol

Good grief. Sounds like someone is living in the 1990’s!

 

[Amy]

Welcome to Arkansas.

 

[pellicle]

She got a TONE and reiterated that testing that often wasn’t necessary for any of her patients.....

I think I see her view on providing a service

Guess I have another reason to get my own INR monitor like NOW

there is always ebay ... expect to blow a few strips ... drop of blood size is paramount.

I'd also discuss this with your doctor (who will be writing prescriptions for warfarin) and do so in a way that engenders confidence that you will :

• test regularly
• properly dose
• be compliant on your taking of your dose

Some auctions

• used, looks ok, I get the feeling its from a clinic (why would they have two?)
• used, also looks ok

remember, if you buy with paypal you'll have certainty in buyer protection, check the unit over carefully when you get it, look also at the battery terminals to see signs of corrosion caused from battery leak (a problem if its been left in a cupboard).

Look for dings, cracks and scratches

test yourself and compare this to what's known

Best Wishes