Inr Home Machine?: I understand that... - Hughes Syndrome A...

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Inr Home Machine?

9 Replies

I understand that there are machines that can be used at home to test inr? If so, what would you recommend? I’m in the US and hubby has aps.

9 Replies
KellyInTexas profile image
KellyInTexasAdministrator

It’s been an absolute nightmare since the “Great Faulty Strip Debacle of 2018.”

It is becoming more and more impossible at this very moment to obtain strips unless they come DIRECTLY from Roche themselves. Not from an intermediary source, like an independent medical supply company .

Roche makes the coagucheck XS. I think it is the best one after trialing another one made in the USA, called heme sense by Wilbourne. ( it was not accurate enough, and very cumbersome to use. I do not recommend it. It did require a prescription, which my doctor was happy to provide. )

Roche will sign you up to their program- you order from them- directly! No problem of course! ($$$$$ yes thank you!!!). But... they monitor your results- for a fee! And control how many strips you are allowed... only one strip every two weeks.

The bigger issue is a very important and extremely valid one.

Simply stated: “ These machines are not as accurate as a vein draw, especially in APS patients, and therefore should not be relied upon as a measurement of the INR.

Absolutely true!

Roche has a very clear statement about the use of their coagucheck xs machines with regard to APS patients: “ Roche does not support/ recommend the use of these machines in the APS patient due to the aps antibodies interference with the reagent on the back of the test strips.”

Absolutely true! ( but with a caveat..)

APS patients need to be specifically trained how to use them for APS! It’s only as a “ guide” for us. I use mine to see how I am trending. Up or down, and what do I need to eat for dinner that night. Also, is something going way off track? Usually you will learn your particular ,” off set” with the machine. It’s patient specific dependent on INR range and antibody positivity- as a large rule of thumb.

It helps greatly as a ,” management tool”, not as a absolute value, like the vein value. We know this if we are trained properly.

Again, APS is so difficult, especially in volitile severe cases, that we need all the management tools we can get. We also need all the training we can get!

Thank you DR HUGHES! He never intended this to be a replacement for a vein draw- he only meant for it to be a management tool- just to help be an indicator of how to keep the ship from going off course.

Some patients never get a consistent enough off set betweenfinger prick value and vein value to make it a useful tool. You just have to see yourself, so often parallel testings with vein draws ( maybe twice a week or so) and keep scrupulous notes for the first few months, paying close attention to greens in diet.

Unfortunately many physicians don’t understand this, don’t explain it properly, and

Patients are put at risk on a multitude of levels.

So sorry for lengthy explanation- but your question did require a back history for you.

So- you will not be able to get reliable ( guaranteed non faulty lot numbers and quality controlled ) at this particular time from any particular vendor at this time as far as I’m aware, if your husband INR needs have been set at 3.5 or higher at with stents they certainly have been.

My doctor would like to prescribe me the strips personally, but the hospital owns them. ( they buy direct from Henry Schein, a certified Roche vendor.) He suggested I have a meeting with the CEO of the hospital. Explain the situation. I have a meeting set up. “Watch this space / stay tuned.”

MaryF profile image
MaryFAdministrator in reply to KellyInTexas

This is great advice, and I will add that people using the above mentioned machines do well, if they are also tied into their hospital clinic or local clinic to check for any differences between the results. The testing strips here in the UK, not many get them now, as the CCG's appear to say no in some areas. I hope KellyInTexas that you get a good result with your test strips allowance, as it is so short sighted not to give people more of those. I hope look forward to hearing what happens at your meeting.

Also the same amount of greens per day, fits with the sensible advice given out, however some people are told not to eat any, but it is consistency which is the key. Not ever having been on Warfarin, I have never had to do this myself, however I have a number of friends who do, and they were properly trained and monitored in the early days as you describe above. However clearly it does not work for everybody. MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

Absolutely correct. It’s best to anticipate eating the same vitamin K value each day. I think of it as medicine. Depending in my INR value, I then adjust my green ( vitamin k ) intake up or down that evening.

( note: warfarin peak hits in roughy 72 hours, where as vitamin K shoes in approximately 15 hours. This is why it’s important to think of greens as complimentary medicine that works in relationship with warfarin .)

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

( I know you already know all these things, Mary. Just ,”putting it out there” so to say for the benefit of others if they may be reading the info for the first time. Hope your migraines are getting under control. )

MaryF profile image
MaryFAdministrator in reply to KellyInTexas

Thanks, yes much better. MaryF

SheRidesAUnicorn profile image
SheRidesAUnicorn

I can’t offer you any real specific advice but it was a long hard battle for me to get a Coaguchek and I’m in the U.K.

I’m still under the care of my local anti coagulation clinic but I visit them every 6-8 weeks for a venus draw but I check mine every 2 weeks or sooner as necessary.

We’ve run them in combination and for me it gives a pretty accurate result. If I get anything out of range I go in for a Venus test.

However I’ve had a long battle to get my strips on prescription as my local authority doesn’t support self testing. I had to buy my own machine and after a lot of back and forth I managed to get them to be prescribed. Ultimately my argument was that their clinics are on weekdays in working hours and as someone in my 30’s who works with a young family it wasn’t fair to expect me to take time off every 2 weeks. But it was a battle!

Good luck!

jetjetjet profile image
jetjetjet in reply to SheRidesAUnicorn

I have THEM CALLING ME TO PURCHASE THEIR EQUIPMENT {OF WHICH I CAN'T USE } - JUST GOT ANOTHER CALL AND YOU KNOW WHEN I ASK ABOUT THE STRIPS THE CALL CHANGES DIRECTION QUICK

MaryF profile image
MaryFAdministrator in reply to jetjetjet

Good for you. MaryF

orygun66 profile image
orygun66

I use the coagucheck machine and have been for 6 years. I test weekly because my INR is all over the place. When I can get 6 consistent weeks I'm thrilled. It says I am within goal 52% of the time. Every time I have been to hospital near the time I have checked, their number and mine have been very close. I get blood draws otherwise throughout the year and my INR gets checked as well.

Patti

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