Importance of self-management

[Keithl]

I was just thinking of getting the prescription for warfarin, the machine actually pays for itself over time

Hope to have that conversation with my cardiologist in a few months if they will write a prescription without the service.

 

[Protimenow]

Keithl - perhaps your primary care physician would be willing to write your warfarin prescriptions. Anticoagulation monitoring doesn't have to be the responsibility of a cardiologist.

 

[Agian]

I can sort of understand why they're wary of patients self-testing. It's not a medication you mess with. They may actually underestimate the skills of patients, and overestimate their own. I'm sure some of these so called experts know what they're doing. But there's some scary **** being reported here.

Hang on, let me try something here.... ****. Will you look at that.
**** **** ****

 

[Protimenow]

I can certainly understand the wariness of the physicians, too. Warfarin is very low tolerance. But, as Agian said, the 'professionals' often don't know what they're doing, or they're reading from erroneous protocols.

If a patient self-tests weekly, any dosing error will show up in the INR. And it would take monumental incompetence to, say, double a dose or stop taking it altoghether - so I wouldn't expect INRs - even self-managed INRs - to go too far out of range.

I'll try Agian's word, and see if the system censors me, too. (It didn't censor me when I typed it, maybe it'll do this when I save. ****

 

[Protimenow]

Not only does it censor words, it freezes on other words. Shoot. Or, as they said in The Frisco Kid - sheeit.

 

[Keithl]

I can sort of understand why they're wary of patients self-testing. It's not a medication you mess with. They may actually underestimate the skills of patients, and overestimate their own. I'm sure some of these so called experts know what they're doing. But there's some scary **** being reported here.

Hang on, let me try something here.... ****. Will you look at that.
**** **** ****

I fully understand that, but we need doctors to step up and do their jobs and assess their patients and their ability to do adequate self testing especially if the patient is interested and seems capable. My PCP laughed she said I am ideal for home testing and was not surprised had spreadsheet.

 

[pellicle]

I can sort of understand why they're wary of patients self-testing.

They may actually underestimate the skills of patients, and overestimate their own. I'm sure some of these so called experts know what they're doing. But there's some scary **** being reported here.

I'd say that its quite likely a lack of training (did you get any?)

 

[Protimenow]

I've read that some manufacturers send trainers out with the meters, so that self-testers can actually run tests successfully. Documentation that comes with the meters can also be helpful. There are probably YouTube videos demonstrating how to do a good test, and videos on the manufacturer sites showing how to do a successful test.
When I got my first Coag-Sense meter, I was guided through my first test over the phone. It took a few tests to really get the hang of it.
I never got any training for my CoaguChek S or XS,or Plus for my INRatio 1 and 2, or for my ProTime meters.

I didn't get training for my Coag-Sense PT2 -- because I didn't really need it -- the testing procedures for both meters were the same.

As I mentioned before, some clinics and professionals use outdated protocols for INR management. These clinics are happy with tests every other month if previous tests were in range and consistent. For self-testers, doing a test weekly is the best way to make sure your INR is in range - or let you know, early on, if it isn't.

There will still be a need for anticoagulation clinics or testing in labs or doctor's offices. These facilities will/should be primarily for people who are unable to successfully perform a self-test. These facilities will exist to help patients manage their INR, in case they're unable or afraid to make small changes in dosing when the changes are necessary.

 

[Keithl]

The service provided a trainer, for my CoagCheck XS, it was only way to get the machine as they brought the meter. There was a pamphlet in my Coagusense that provided a number for training, I passed since I had watched the video and have not had any issues.

 

[pellicle]

The service provided a trainer, for my CoagCheck XS

excellent
tell me about your training

 

[Superman]

Our Coumadin Clinic holds a class with a trainer before you get your meter. They partner with a company called Real Time Diagnostics that sends a rep in. There were maybe 10 patients in my class. I think it was helpful for most to walk through step by step. I haven’t needed it, but I understand they provide ongoing support for those who take a little longer to get he hang of it.

 

[Agian]

No training for me.

 

[marvsehn]

I also had a personal trainer deliver my CoagCheck XS. It work well and the training was good. You could practice under supervision and get helpful hints.
There is phone helpline to answer any subsequent questions. I do use 2 strips occasionally but understand the reason. I usually just get a blood sample that is to small.

 

[dreamy885]

BTW, if you want to look it up you'll find that the amounts of broccoli or spinach needed to make a significant effect to INR are rather large. There's posts here on that but if you can't find them let me know.

It's possible that this depends on the person. My INR dropped down to 1.9 from 2.8 after 2 weeks of eating some greens (only one serving a day, and usually just salad.) Then they added 10% and rechecked a week later and it dropped to 1.7 still, from eating one salad a day. I could drink vodka every night, and sometimes I do, and it has little to no effect on my INR. It could just be my diet though, because I like to try and do keto every so often, trying to lose weight. So maybe the lack of carbs affects it too? Either way, I need to buy some test strips because then I could correct this at home and avoid weekly doctor visits. I noticed they seem to have gone up in price, almost $8 each!

 

[Protimenow]

dreamy885 -- one of the key words that they use in relation to INR is consistency. If you make changes in diet or other things (activity might have something to do with INR changes - contradicting a message I posted in another forum a week or two ago), your INR could also change.

In my case, if I have a lot of dark greens one day, it'll show up as a reduction in INR the next day. With greens, the change happens quickly.

If you change from a diet with few or no dark greens to one where you have a salad every day, your INR WILL drop. If this is something that you do constantly, you'll have to increase your dose of warfarin to compensate.

I haven't seen anything about carbs having any effect either way (unless the carbs also contain Vitamin K - like, perhaps, a pizza with kale or some other green, or spinach and ricotta ravioli, or something similar).

Changes in diet - especially going on or off greens will affect your INR.

As far as keeping a supply of strips: are you referring to strips for the CoaguChek XS or the Coag-Sense? The price of Coag-Sense still seems to be around $5 a strip on eBay, and I think the price for the CoaguChek XS is about the same if you buy boxes of 48. If you're using either meter, you should test weekly, so a 48 strip box of CoaguChek XS strips or a 50 strip box of Coag-Sense strips is the way to go.

Even if you use a service or get testing at a doctor's office or lab, you should STILL be self-testing weekly. Weekly testing is a standard, from my understanding, in certain countries, and is the best way to keep your INR on track.

I don't sell strips or meters. I have no financial interest in Roche or Coagusense, but I DO have interest in people who take warfarin. Personally, I can't afford strips for the XS, but I already have a supply for my Coag-Sense meter. IF you can afford a years' worth of strips, I encourage you to buy that way - it's less expensive per strip, and may make it easier to justify weekly home testing.

 

[pellicle]

IF you can afford a years' worth of strips, I encourage you to buy that way - it's less expensive per strip, and may make it easier to justify weekly home testing.

Just make sure they don't then expire before that year period is over.

 

[pellicle]

Hi

It's possible that this depends on the person. My INR dropped down to 1.9 from 2.8 after 2 weeks of eating some greens (only one serving a day, and usually just salad.)

yes, its possible, but given how well we know the mechanism of warfarin (compared to like paracetamol, which we know works, but we just don't know how) to be a Vitamin K antagonist its extremely unlikely that what you observed was caused by the salad and not indeed caused by something else.

Because we understand the biochemistry of warfarin as well as we do, its a bit like saying "sometimes I put a log on the fire and the room gets colder. Its possible that its there was some super concentration of dark matter in the log absorbing the energy mysteriously, but its more likely that the door didn't close when you came in letting out the heat (meaning something external to putting that log on the fire).

I get fluctuations of my INR frequently, but I'm > 90% confident its not food related (though some drinking sessions may be excluded from that ;-) . I know this from rigorous testing and meticulous detail record keeping. This sort of thing underpins science. So if you have had it happen once then its quite likely to be coincidence, but if you can set up control and then introduce a salad and it does that every time then that would be very interesting.

Do you keep weekly data and make annotations with respect to food?

 

[Protimenow]

Let me clarify -- I still suggest buying a box of 48 CoaguChek XS strips or 50 Coag-Sense strips. Check the expiration dates before you buy them -- most new ones probably give you two years to use a one year supply. If the strips expire in 6 months, of course, they're not a good deal.

(I've seen the PT2 meter 'free' if you buy three or four boxes of strips. This may be good for clinics or doctor's offices where this many strips will be used before they expire, but not great for self-testers -- unless the price of the strips, in total, is still less than the cost of a meter. OR, perhaps, if you know someone who already has the PT2 or Coag-Sense 'classic' and needs strips.)

 

[pellicle]

Let me clarify -- I still suggest buying a box of 48 CoaguChek XS strips or 50 Coag-Sense strips. Check the expiration dates before you buy them -- most new ones probably give you two years to use a one year supply.

myself when I buy of the proper online medical supply retailers I've never found them to make that clear (eBay may be different) and I've never had anything with as long as a year on the use-by date. However as always:
* YMMV
* Caveat Emptor

 

[Warrick]

I purchased strips this week and the expiry date is october 2020 which I thought odd but oh well, everytime I have bought strips they have had 12 months expiry left on them.