No surgery, but genetic hypercoagulable state

[Fuzzball]

Hello,

I found myself here in a search for why my usual yearly Coaguchek XS PT INR test strip purchase was unexpectedly turned into an ordeal. For many years I have purchased on Ebay a 24 pack of Coaguchek XS PT INR test strips, and they last me until the following year, testing every 2 weeks. Suddenly this year Ebay dried up, and after much searching I was able to finally find some at an online medical supply, though the expiration date is only 10 months out. I live on the west coast, USA.

I do not have a heart condition. I have a genetic condition that the doctors called "Factor II Mutation - Hypercoagulable State", which caused me to have a pulmonary embolism (blood clots to the lungs) on two occasions. My liver is more efficient than average in producing blood clotting proteins out of Vitamin K. I take 10mg Coumadin/Sodium Warfarin per day, which I'm told is a lot. That keeps my INR between 2.3 and 3.1, my desired range.

So here I am looking to figure out what is going on with Coumadin, and to plan for next year. I have a Roche tester that I bought 8-9 years ago and, up until now, it has been a breeze getting supplies. Can someone tell me the straight and narrow version of what happened to the Ebay Coaguchek XS PT INR test strip market?

Thanks,

Fuzz

 

[pellicle]

So here I am looking to figure out what is going on with Coumadin, and to plan for next year. I have a Roche tester that I bought 8-9 years ago and, up until now, it has been a breeze getting supplies.

https://www.valvereplacement.org/threads/where-are-you-getting-your-supplies.889453/post-930885

Can someone tell me the straight and narrow version of what happened to the Ebay Coaguchek XS PT INR test strip market?

fear ... oh, and "Freedom" apparently.

 

[dick0236]

Hello,

I found myself here in a search for why my usual yearly Coaguchek XS PT INR test strip purchase was unexpectedly turned into an ordeal. For many years I have purchased on Ebay a 24 pack of Coaguchek XS PT INR test strips, and they last me until the following year, testing every 2 weeks. Suddenly this year Ebay dried up, and after much searching I was able to finally find some at an online medical supply, though the expiration date is only 10 months out. I live on the west coast, USA.

I do not have a heart condition. I have a genetic condition that the doctors called "Factor II Mutation - Hypercoagulable State", which caused me to have a pulmonary embolism (blood clots to the lungs) on two occasions. My liver is more efficient than average in producing blood clotting proteins out of Vitamin K. I take 10mg Coumadin/Sodium Warfarin per day, which I'm told is a lot. That keeps my INR between 2.3 and 3.1, my desired range.

So here I am looking to figure out what is going on with Coumadin, and to plan for next year. I have a Roche tester that I bought 8-9 years ago and, up until now, it has been a breeze getting supplies. Can someone tell me the straight and narrow version of what happened to the Ebay Coaguchek XS PT INR test strip market?

Thanks,

Fuzz

The vast majority of Coumadin/warfarin users take the drug for issues not related to heart valve surgery. There have been several drugs introduced that do not require periodic testing.....but not for valvers. That has caused the profitability of warfarin to decline.....along with no need for testing. Another problem is the "liabity" problems caused by patients misusing the drug with no, or little doctor supervision.......causing many doctors to stay away from prescribing warfarin for home users. I used to home test but have found much less hassle by subscribing to a coagulation clinic....that contracts with my doctor. I test bi-weelky with no cost to me.....or hassle to find strips.

Incidentally, since Coumadin lost it's patent protection, and Bristol, Myers stopped producing Coumadin, few, if any, potential Coumadin manufacturers want to compete with the low cost of warfarin.

 

[pellicle]

Incidentally, since Coumadin lost it's patent protection, and Bristol, Myers stopped producing Coumadin, few, if any, potential Coumadin manufacturers want to compete with the low cost of warfarin.

but there is still a very handy supply of it ... just like Aspirin or Paracetamol (Metoprolol ...)

 

[Chuck C]

Welcome to the forum.

I use to also buy on Ebay until they stopped allowing them to be sold there. My last purchase was with Self Care Depot: https://selfcaredepot.com/

You might have a hard time finding a 24 pack for which the expiration date is a year or more out, as you are seeking.

I have not done this myself, but apparently you can adjust the date on your Coaguchek back a few months to use strips that have recently expired, if you are comfortable doing so. I believe that Roche is very conservative with the expiration dates, meaning they are probably still good for some time after the official expiration, but that would have to be a calculated risk on your part if you wanted to use all 24 strips before buying a new package.

 

[pellicle]

quick point

I take 10mg Coumadin/Sodium Warfarin per day, which I'm told is a lot.

its not, heck I even know people here taking 17mg and this thread should open your eyes, here I'll start you on the eye popper.

https://www.valvereplacement.org/threads/the-largest-daily-dose-of-warfarin.26524/#post-464774

https://www.valvereplacement.org/threads/so-is-anybody-esle-on-17mg-aday.30095/

more if you search

 

[Fuzzball]

The vast majority of Coumadin/warfarin users take the drug for issues not related to heart valve surgery. There have been several drugs introduced that do not require periodic testing.....but not for valvers. That has caused the profitability of warfarin to decline.....along with no need for testing. Another problem is the "liabity" problems caused by patients misusing the drug with no, or little doctor supervision.......causing many doctors to stay away from prescribing warfarin for home users. I used to home test but have found much less hassle by subscribing to a coagulation clinic....that contracts with my doctor. I test bi-weelky with no cost to me.....or hassle to find strips.

Incidentally, since Coumadin lost it's patent protection, and Bristol, Myers stopped producing Coumadin, few, if any, potential Coumadin manufacturers want to compete with the low cost of warfarin.

Thank you for your reply.

For a prescription drug, Coumadin is amazingly cheap. I have insurance but there's no point in using it for this. I use a Wal-Mart pharmacy near my house. Their price for generic Coumadin is $10 for 90 pills. It makes no difference if the pill is 10mg or 1mg, the price is $10 for 90 of them. Basically the cost of manufacturing the pill itself. The size options I have are 1, 3, 5, or 10 mg. Technically I need about 9 mg per day, but I get 10's and cut the end off, since going from 10mg (1) pill to 9mg (3x3) would ironically triple my cost.

 

[Fuzzball]

Welcome to the forum.

I use to also buy on Ebay until they stopped allowing them to be sold there. My last purchase was with Self Care Depot: https://selfcaredepot.com/

You might have a hard time finding a 24 pack for which the expiration date is a year or more out, as you are seeking.

I have not done this myself, but apparently you can adjust the date on your Coaguchek back a few months to use strips that have recently expired, if you are comfortable doing so. I believe that Roche is very conservative with the expiration dates, meaning they are probably still good for some time after the official expiration, but that would have to be a calculated risk on your part if you wanted to use all 24 strips before buying a new package.

Thanks for your reply. There have been times over the years where I had to turn back the clock on the meter to use an expired strip. Just a couple of times, and they weren't very far past expiration, while I had new ones ordered but not arrived yet.

This year, after hitting the unexpected brick wall when I started my search for test strips, I dug through my supplies and found an unopened tube of 6 strips from a couple of years ago. I was ready to start using them before finally locating a tube of 24 at https://www.mountainside-medical.com.

 

[Fuzzball]

https://www.valvereplacement.org/threads/where-are-you-getting-your-supplies.889453/post-930885


fear ... oh, and "Freedom" apparently.

Thank you for that link. This forum may be a Godsend to me. Of course my physician wants me to look into other drugs that do not require testing, or to do my Coumadin needs through a (very expensive) "therapist", but I have been using Coumadin for around 20 years now and I am not a drug du jour fan. Most doctors sound like talking parrots to me any more. "Braak... here's a drug. Braaak.. there's a newer drug. Let's spin up the ole insurance machine and see what she'll do!"

I'm already putting the insurance company's kids through piano lessons. I don't want to put them through college too!

 

[Fuzzball]

its not, heck I even know people here taking 17mg and this thread should open your eyes, here I'll start you on the eye popper.

Wow... I thought I was taking a lot. Back when I started at my current pharmacy, the first time I came to pick up my prescription, the pharmacist refused to sell it to me at first. He insisted that 10mg must be some kind of mistake, and that nobody takes that much. Once I explained my pulmonary embolism history and genetic mutation, and showed him my familiarity with the process and how it works... Vitamin K competing with the Sodium Warfarin molecule for the same uptake points in the liver, to be converted into clotting proteins, he finally relented and sold it to me. That led me to think I was some kind of genetic freak. (Besides being just uncommonly handsome) ;-)

 

[pellicle]

Besides being just uncommonly handsome)

That's the spirit

 

[Bubba T]

Conclusions:​

Prothrombin gene mutation is present in several DVT patients, especially those with recurrent DVT or a family history of DVT. This mutation may contribute to a poor response to warfarin.


Seems to be a link between some G20210A mutation patients and poor response to warfarin.
"https://pmc.ncbi.nlm.nih.gov/articles/PMC2778014/"