15 years self testing and self managing

[Protimenow]

I started self testing and self managing in 2009 - probably the dark ages for both. I was able to get a Protime meter on eBay, and a doctor friend ordered strips for me (they apparently needed a prescription or had to be ordered by a doctor). I don't recall knowing about - or looking into - the CoaguChek meters (back then, it was the S and XS).

I'm glad to see that, during those years, the acceptance of self testing (and, in many cases, self managing) has broadened - and that self testing is even encouraged in some countries.

I'm sure that I'm nowhere near being a pioneer in this area, but considering the difficulty I had to get a meter and strips in the early days, I may be one of the earlier adopters/managers.

I chose the name Protimenow to help push self testing - getting results NOW instead of having to schlep to a lab and wait a day or two for a doctor to give you results. I wanted to then - and I still do - democratize the process of self testing (affordable meters, affordable supplies, and, if a person can do it, accessible management information).

 

[pellicle]

I'm sure that I'm nowhere near being a pioneer in this area, but considering the difficulty I had to get a meter and strips in the early days, I may be one of the earlier adopters/managers.

you are indeed one of the earlier ones. But when I started doing it in 2012 I noted that Ross and Hank had been at it starting 2001

https://www.valvereplacement.org/threads/error-rates-for-protime-and-coaguchek.588/

its pretty sad that it took 20 years for it to no longer be a complete surprise to medical professionals, but there it is.

Live Long and Prosper

 

[Protimenow]

When I had my ablation on Tuesday, a nurse in Prep and Hold at the hospital (which was doing only cardiac stuff) was surprised when I told her that I had my own meter and was self testing.

That link to 2001 was amazing.

 

[pellicle]

a nurse in Prep and Hold at the hospital (which was doing only cardiac stuff) was surprised when I told her that I had my own meter and was self testing.

we are quite the minority (even here on VR until recently)

That link to 2001 was amazing.

I noticed some of the "sticky" notes added by Ross are now no longer sticky (and probably no longer relevant either twenty years later),

 

[Protimenow]

The number of self testers seems to be growing - though I'm not sure how rapidly (some doctors seem to be prescribing testing services, but I don't know how many - it may still be a drop in the bucket for warfarin users). Self managers probably ARE a tiny minority -- especially since many of us have to convince prescribers of warfarin that we know what the hell we're doing. (My PCP and cardiologist BOTH know that I can do it. I keep a large quantity of warfarin in reserve in case I have trouble getting it, or I somehow wind up with a doctor who WON'T write a prescription for warfarin).

 

[ATHENS1964]

Before the surgery I had already bought my own cash and a box of tapes, my heart surgeon and my cardiologist were in agreement.In Greece, the public health organization gave the possibility for someone to buy cash with a big discount, and very few patients did it.
From what I understood, the reason was that they didn't trust it, and many doctors didn't recommend it or didn't even know it existed.
Because my heart surgeon understood that I had a lot of knowledge on the subject of INR self-management, he gave my phone number to several of his patients to contact me and learn how they could get the device and how to handle it properly. I also shared my experience with vitamin K intake and nutrition in general to many.
I have helped more than 20 people and because of my job I have also talked to many doctors about self-management etc.
I had also created a group on Facebook and at this moment in Greece the sales of roche have multiplied (I did not receive a commission from roche)
I'm glad that I learned from my problem and was able to help someone, today almost every patient is informed by their cardiologist that they can get an INR measurement kit, as is known Greece is an island country with many remote islands and areas with few inhabitants and difficult access especially in winter.
Imagine the usefulness of the INR device on an island that has a ferry connection once a week or a remote village with 200 residents without a cardiologist or LAB.

 

[pellicle]

The number of self testers seems to be growing

Agreed

 

[Chuck C]

I keep a large quantity of warfarin in reserve in case I have trouble getting it, or I somehow wind up with a doctor who WON'T write a prescription for warfarin)

I also like to keep a large reserve of warfarin. I'm ready for the zombie apocalypse.

At Costco, the retail price for warfarin is less than $3/month, so it's super cheap to always keep several months of reserve.

 

[ATHENS1964]

I also like to keep a large reserve of warfarin. I'm ready for the zombie apocalypse.

At Costco, the retail price for warfarin is less than $3/month, so it's super cheap to always keep several months of reserve.

I also have a supply for 10 months, when it is reduced to 8 I buy, the cost is about 2 euros a month .

 

[Chuck C]

I also have a supply for 10 months,

We might qualify as Preppers

 

[ATHENS1964]

We might qualify as Preppers

I also have some enoxaparin syringes (levenox-clexan) in case INR <2

 

[Protimenow]

My INR is taking a bit longer than expected to get into range - I reduced it to 1.5 on Tuesday (4/2) and it's ONLY 1.9 now. I'm upping my dose by .5, will retest tomorrow (not expecting to see a jump from today, of course, but maybe a bit of a jump from Thursday's dose), and I feel safer dropping a dose slightly if my INR is at the high end of my range than I am if it's at the lower end. Not time for bridging yet -- I'll see what tomorrow's test tells me.

BTW - with my insurance, Warfarin costs zero dollars.

 

[MaryLM]

I don't know what I would do without the ability to self test. Thank goodness for Roche! One huge benefit is travel. Just bring my meter, strips, and meds with me and I'm good to go. Awesome!

 

[pellicle]

I don't know what I would do without the ability to self test. Thank goodness for Roche! One huge benefit is travel. Just bring my meter, strips, and meds with me and I'm good to go. Awesome!

Amen sister

 

[Protimenow]

At one time, I would have included Coag-Sense to the list - but Roche is IT now.

 

[sandpoet_1]

My INR is taking a bit longer than expected to get into range - I reduced it to 1.5 on Tuesday (4/2) and it's ONLY 1.9 now. I'm upping my dose by .5, will retest tomorrow (not expecting to see a jump from today, of course, but maybe a bit of a jump from Thursday's dose), and I feel safer dropping a dose slightly if my INR is at the high end of my range than I am if it's at the lower end. Not time for bridging yet -- I'll see what tomorrow's test tells me.

BTW - with my insurance, Warfarin costs zero dollars.

Ive been taking warfarin since 2008 after a mechanical aortic valve replaced a diseased aortic valve. The dose range is 2.5-3.5. For years I would go in every 2 weeks to be tested and my dosage was 10-12mg/day. Monthly anticoagulents are not recommended for mechanical valve recipients. After a while, I learned of the Coagchek home testing and since my insurance covered the device rental and the Warfarin, I opted for the home testing. Its convenient and results can be sent to the doctor through the Coagchek service provider. My cardiologist would not approve or monitor, so my primary care doctor wrote the prescription, follows the testing and I have been using for this over 10 years. My doctor even gave me a spreadsheet with instructions as to dose changes when the test results were out of range.
The tragedy is the cost the insurabnce must pay for this service. The device costs about $1000 if you purchase outright, but the insurance will not pay for the device, nor the doctor accept a test result from the patient directly. Sadly, Coagchek charges Medicare $800 every 3 months for the rental of the device. Another area that the Pharmaceutical companies are ripping off the public indirectly through the insurance companies.

 

[pellicle]

The device costs about $1000 if you purchase outright, ...

where? Rippoff centers? A more typical price (at a retail outlet, so not even government level wholesale) would be US$600 ... in Australia in Australian dollars they cost $600.

Sadly, Coagchek charges Medicare $800 every 3 months for the rental of the device.

very interesting ... since the machine can be purchased outright for less its no wonder that some places give the patient a device (NHS in the UK comes to mind) and the price of strips would mean that a blood test (and processing) would also generate a much bigger cost to "the system".

I look forward to the emergence of research driven by the new INRange devices which bluetooth sync to your phone and automatically link back to the group monitoring the data; then we'll see how stable people really are ;-)

 

[Protimenow]

I was referred to a service that apparently only charges $90 a month, including rental, reporting to the prescribing doctor and, I think 4 or 6 strips a month. If you need more strips, they charge a very high $50 for 6. I can get 48 for abouat $225.

$1000 for a meter is WAY TOO HIGH. I own my meters - I got an XS for as low as $30 on eBay. The InRange meters cost around $600. Try Reliaston (where I buy my strips - I'm not endorsing any company - but they sometimes have deals on meters AND strips). I've been self testing and self managing since 2009. Management wasn't hard for me (even without Pellicle's help).

Your doctor probably knows less about warfarin management than you think -- if you're able to self manage, consider doing so, and save the medical system from the ridiculous amounts of money that they charge to report your results to a doctor, nurse, or pharmacist who probably uses outdated protocols to manage your dosing.

I keep dosing, results, time and date, and any issues that may be related to my INR on a spreadsheet on my computer, and frequently back it up, with a copy stored online.

 

[perrybucsdad]

Hi all, I started testing way back in the early 2000's. I remember having a lot of fond conversations with Ross and my struggles getting approved for the tester. I was trying to recall the very first tester I had. I recall it had a plastic cover that would fold up to allow you to test, and I had to keep the test strips, which were big and thick, in the freezer. Thankfully, we don't have to do that any longer.

Just recently, I just got approved for a new CoaguChek Vantus meter with a service... everything being $0 out of pocket (how times have changed). Way back with my first tester, I had to pay over $2000 if I recall for the unit, and I forget what I paid for the test strips.

The only thing I am no longer allowed to do is self-manage. That's okay, as I had done that for years where I would call into my cardiologist, and he would quiz me and teach me how to self-manage. Unfortunately, he passed away a few years back, and the new doc isn't a fan of self-management. I still am doing the calculations in my head to ensure that the coumadin clinic is not doing anything weird, and I will push back if I think something is too aggressive. It has been my experience, from years ago before I started to self test/manage that the lab would over adjust for a minor "out of range" reading. This will wild swings and why the nomograph that I use keeps me sane.

 

[Protimenow]

The meter you had was probably the ProTime. It had beige(?) plastic lid. The strips had to be refrigerated - they were shipped in a container that had plastic refrigerant blocks so the strips don't hit room temperature. Fortunately for me, I got mine on eBay for, IIRC, about $35. A doctor friend got the strips for me (they were by prescription only).

Over the years, I've been stuck with some group that decided that they knew more than I did about self management. I continued to manage by myself, often ignoring them. They were impressed at how well they were managing my dosing.

If they only knew.

When they started scheduling follow-up appointments a month apart, I finally gave up on them.

I'm still using a Coaguchek XS - it works for me.... (I have an XS Pro as backup - color touch screen, but the same basic stuff as my XS).