new INR tester

[Beckysuec]

I have been diagnosed with APS for 25 years after having a stroke at 37 years. My treatment medication treatment regime is warfarin plus baby aspirin. I have my INR completed between 1-3 weeks apart but usually every two weeks due to its variability. I have received a coaguchek INRange point of care tester (POC) to use when I travel. I read that people do comparisons between venous blood labs and POC testing to get an idea about the accuracy but also the differences in reading to assist with determining their INR. I would appreciate people's thought or any tips that they can give me. Thanks

[sailorbaejon]

hi!

I also got my INRange meter a few months ago, ready for a month away in Nepal, consultant was concerned my diet would change and wanted me to test weekly.

Before I could use it regularly I had to do the following:

1) Read instructions and be happy with the machine in general.

2) Attend my Anticoagulant clinic with the machine so they could see it was ok, in good condition / working etc.

3) Take a sample in front of the nurse and then test it on my machine to demonstrate that I could turn it on, follow instructions, put the strip in, do it all within the relevant times etc.

4) The nurse then tested the same blood on the hospital machine (fancy professional one) to make a comparison against my machine.

5) I then had to read and sign a declaration that I would test as and when instructed, and according to machine instructions etc.

6) I have to have a venous test at least every 3 months to confirm, if not more often.

7) I have to take the machine back every 6 months to check the calibration against the clinic machine.

I’m really pleased with it, very quick and simple to use, and saves a lot of hassle getting to clinic on the train etc.

I’ve heard some criticisms of the machines, but basis my consultant and clinic all supportive of it then I’m happy to use it.

Only problem I had was using it in the cold mornings. Had to go back to bed and warm it up for 30 minutes a couple of times!

Hope this all of use, good luck!

Cheers

SBJ

[sailorbaejon in reply to sailorbaejon]

To add….so far when I’ve had venous comparisons the readings are always very close, eg within 0.1 or 0.2, which the clinic are happy with.

Cheers

[Beckysuec in reply to sailorbaejon]

I appreciate your detailed response. I am leading about this system on my own as my involvement in clinic is only for bridging. I thanks you for sharing the information on the comparative readings. That assists me.

[sailorbaejon in reply to Beckysuec]

Hi! To update, my consultant also just asked me to make 6 comparison tests, using the machine at the same time (or as close to) the venous test. This will then show any consistent / normal gap in readings which can be used for when clinic make any dosage adjustments.

In my experience so far the clinic are not so hot on APS, don’t think they see much of it, so I stay properly on top of them and try to discuss as much as possible about my treatment.

Don’t get me wrong, they’re great, but they’re also working with something they don’t see much.

Cheers

Jon

[Beckysuec in reply to sailorbaejon]

Many thanks to your recent replies. I feel like a fish out of water with this POC testing. My specialist recommended it and provided the necessary documentation to purchase it. From that I do not have any direction. I contacted her clinic but she is away. I am not followed by an anticoagulantion clinic. As you said, this is a rare disorder so my pharmacy and the community labs are not able to support me. My current issue is drawing enough blood to provide an adequate sample in the 15 second timeline. I tried drinking sufficient water, warming my hand, massaging my fingers, using the three middle fingers, poking on the edges (at ten and two). I used 4 strips, and having the lancet number on 5 on Tuesday with no success. So any ideas of how to accomplish this would be appreciated. I find all of your posts very helpful so thanks for taking the time and sharing your knowledge. Thanks

[sailorbaejon in reply to Beckysuec]

Hiya, that sounds really tricky getting the sample, mine can also be slow, but not as bad as yours. The only thing I also do is keep my arm and hand hanging down towards the ground before and after I’ve made the finger prick, to help coax the blood out, and like you I have to drink plenty of water a half hour before, wash my hands in warm water etc etc. It becomes expensive when you have to use multiple strips!

For the 15 seconds, I understood that the criticality is getting the first drop of blood onto the strip within 15 seconds once it’s out of your finger, not from when the finger prick is made. So, I thought it matters less on how long it takes to get the drop out, but once it’s visible and ready to put on the strip then that’s when the 15 seconds starts? And obviously there’s the 180 seconds that the strip requires.

I usually make the finger prick (I also always use number 5!), then slide the strip in the machine, and while it’s warming up I usually have produced enough of a drop to put on the strip, so all the times work out ok.

A couple of other thoughts if not tried already…you could try making two or three finger pricks all close to each other, or try lots of different parts of various other fingers, there might be a patch that works better than others?

I hope you can get it to work better. I sometimes wonder that even with warfarin if we’re not bleeding much, or if the drops don’t come out easily then isn’t that a sign that we need more warfarin??

All best wishes

SBJ

[Beckysuec in reply to sailorbaejon]

Good morning from Canada. Thanks for your recent posts. All information is helpful. Your comment about 15 seconds lead me to call coaguchek and they indicated that the timing starts when you lancet your finger. I wonder if the clotting response commences upon impact. That is interesting as my only successful reading had my venous INR .2 lower than the POC machine. I read a study that says test retest with the same blood draw in the same lab can vary 0.1. But I agree with your comment that it is understanding your comparative measures that helps with knowing how to interpret the POC measures. Thanks again for sharing your knowledge and providing support.

[sailorbaejon in reply to Beckysuec]

Hiya,

Great shout to call CC, thanks for passing on that info, super important to understand that fully and will certainly make me focus better on my self tests!

Agreed again on the comparative readings, can only be that the more of these we have then the stronger and more reliable the data is, and more importantly the subsequent dosing decisions?!

Thanks again for the info 🙂

[sailorbaejon in reply to Beckysuec]

Hiya again!

Bizarrely I just had an unrelated call from the pharmacy about my meds. I took the chance to mention that despite my warfarin I struggled sometimes to get a blood drop.

The pharmacist said that this is not warfarin related, but can be down to chance of where the finger prick is made and location / depth of capillaries etc, so maybe it is that you need to experiment more on location to find somewhere that is more readily gushing!?

He said people quite often ask the same or similar question, including whether or not they’re taking enough warfarin.

Hope this helps!

SBJ

[Greenmil3]

I would love to go back to my coagcheck machine but after 2 years did venous comparison and showed wildly inaccurate for me. They are easy to use once you get the hang of it and the ginger prick is so much less hassle than trips to have blood taken. Good luck and enjoy your travels

[Beckysuec in reply to Greenmil3]

Thanks for your information. I hope I am able to successfully use this for travel. Thanks for taking the time to respond.

[MJTroubadour]

Hi there! I have one for travel as well . I am single positive (anticardiolipin) primary in Canada. I have my machine calibrated with my venous draw every 3 months. I am tested once per month at the hospital. From what I understand, not all aps patients are able to use it. It seems to depend on if you're single, double or triple positive and which antibodies you are positive for. Mine has always matched perfectly with my blood draw and in a pinch I might depend on it if for some reason I couldn't get to my regular clinic. The price of the tests is quite steep so I do limit it to travel only. I hope that helps!

[Beckysuec in reply to MJTroubadour]

Many thanks for your reply. I also reside in Canada. It is interesting to hear about the issue with accuracy depending on the degree of positivity. All the information is helpful to me regarding my use of this equipment and what to expect with results. I appreciate you taking the time to respond.

[MJTroubadour in reply to Beckysuec]

Of course! Best of luck. I'm in Ontario... Kingston.

[sailorbaejon in reply to MJTroubadour]

Hi, saw yours about the single / triple diagnosis etc. Do you know when it’s considered possibly unreliable? I’m triple positive, but my consultant still seems happy for me to use it. Must admit, I’m tempted to get a more regular venous comparison done, there’s a lot at stake for not having it right!!

[MJTroubadour in reply to sailorbaejon]

💯!!! I seriously only use it when I am not able to be at my home clinic. I've heard that it is potentially unreliable for some people but like you, my hematologist is the one that recommended it to me and to be fair, it's always been bang on with the venous INR readings. I travel sometimes for a month at a time and since I only get my INR treated once per month, It very rarely gets used. But I think as long as I was confident in my vitamin kind consistency (I weigh and measure all of my vitamin k rich foods and track them in an app), I would depend on it in a pinch till I could get to my clinic.

[sailorbaejon in reply to MJTroubadour]

Yeah, I’m super cautious with keeping my diet as consistent as possible, but when I had a month in Nepal the doc insisted I get the machine, as she was confident (and she was right!) that my food intakes would change. INR went up from around 2.2 to 3.7 probs as I just wasn’t eating any green veg!

[MJTroubadour]

Oh yikes!!!

[KellyInTexas Administrator in reply to MJTroubadour]

You will need at least three months of twice a week side by side ( take home machine into your regular blood draw lab for simultaneous testing. Preferably at the same time of the day, maki g sure( which I’m sure you already do) to take your warfarin at the same time each day.)

Only then can you truly get a true look at the average over a reasonable amount of time as to how steady you are with the fluctuation of your inr, and the lability between your coag u check and the gold standard vein value.

The higher the INR, the greater the difference there is likely to be between the coagu check and the hospitals vein draw. ( in other words, the more inaccurate the home testing finger prick machines become, the higher the INR. )

They became too inaccurate for me to continue to use, sadly.

[Beckysuec in reply to KellyInTexas]

Many thanks for your thoughts. I have read your information is the best way to complete this process. I wish I could follow this standard. I am also two weeks away from leaving the country. also, in order for me to complete this I would have to spend $250 on test strips. In Calgary, Alberta, we have to book our labs tests six weeks in advance to have an appointment. Otherwise, you have to do it as a walk-in where you have to sit and wait to be seen. I appreciate your thoughts as I am waiting for more definite plans and guidance from my specialist. I will use it only on vacation for a few tests to give me some readings but will return to my in-lab draws when I am in the city. Sorry this system has not worked out as you hoped. I appreciate you taking the time to respond.

[KellyInTexas Administrator in reply to Beckysuec]

Sadly, there’s usually no quick answer with warfarin and side by side studies.

I had to buy all of my own strips for 4 years plus machine. I tested every other day . Was awful. I happy to be on lMWH twice daily- insurance covers it now, and no guess work- double testing, only to be out of range- even with vein draws also. ( warfarin just did not suite me.)

I hope you have happy and productive travels!

[Beckysuec in reply to KellyInTexas]

Thanks. I appreciate hearing your story and how it has worked for you. Best wishes for continued wellness.

[GranadaBob]

Hi,

SBJ has provided a thorough description of their Coaguchek use regime and I think the Roche Coaguchek is a wonderful device for most people.

HOWEVER MJTroubadour rightly warns a Coaguchek doesn't give reliable INR readings for everyone.

If you test positive for Lupus anticoagulant, using a Coaguchek machine whilst on Warfarin can lead to inaccurate INR readings. Hence the importance of points 4) and 6) of SBJ's post.

Buried deep within the Roche instructions is this information: "The presence of anti‑phospholipid antibodies (APAs) such as Lupus antibodies (LA) can potentially lead to prolonged clotting times, i.e., elevated INR values."

The FAQ at diagnostics.roche.com/globa... reinforces this.

Specifically, the answer to the question “Are there interferences when testing with CoaguChek systems?” is:

“The presence of anti-phospholipid antibodies (APAs) such as Lupus antibodies (LA) can potentially lead to prolonged clotting times, i.e. elevated INR values. A comparison to an APA-insensitive laboratory method is recommended if the presence of APAs is known or suspected”

I'm triple positive and found out about this Coaguchek limitation the hard way a year ago - it cost me a TIA.

In my case, if the Coaguchek reported an INR around 3.5 (my target INR), a venous draw showed 2.0 or 2.1.

If a venous draw showed 3.5, the Coaguchek reported INR out of range, i.e. > 8

[sailorbaejon in reply to GranadaBob]

Crikey, thanks for flagging that up. I’ve now booked a venous test for tomorrow morning. Does feel like the switch to the machine has happened very quickly with not much venous comparison. Going to make some more regular comparisons. In reflection, the flaw in my process with the clinic is that they compared my machine against their machine, so if the APS inconsistency is in the machine then that’s not much reassurance….

[Lure2]

No, it does not give accurate readings for everyone.

Here in Sweden (Stockholm) we use another machine, "ILine microsystems". For me that machine is not accurate either as I am triple positive with very high readings but I take a test in my finger almost every day and then I know that if I have a very high INR one day, there is a wider difference between the blood draw and the finger prick draw. If I think that I am too low in INR, that is under an INR of 3.5 that day, I have to take a Fragmin shot that will last for 12 hours. I always eat the same amount of greens and very very seldom change my dose of Warfarin. The Fragmin does not change the INR only makes the blood not so thick.

Remember we are all difference with this illness but useful to know about the difference between the INR at the hospital and the fingerprick value. The higher INR at home one day, the greater difference if you test in the vein the same day (not more than a 2 hours difference). I do think that we with Lupus Anticoagulant are that way very often. Important to know about these things when having APS and using Warfarin.

Kerstin in Stockholm

[Beckysuec in reply to Lure2]

Many thanks. I appreciate you taking the time to send me this information. I guess I will have to see if this system works for me when I travel. That is my hope. I will continue to do comparative measure when I am home. At least if I get some understanding of the differences then I can have a better knowledge of what is going on with my blood. It is nice knowing that if it does not work there is a reason why. Then I will not get my hopes up too high. Cheers

[Lure2 in reply to Beckysuec]

I must add that the vein value i s always the only correct INR-value. I meant that if I had below an INR of 3.5 (in the vein that is) I have to take a Fragmin shot not to clot. After I started Warfarin in 2012 I have been much better especially as to neurological symptoms.

For those with about the same value in the finger as in the vein (compared lots of times to know how it really is) they can be happy to know that they can always trust their INR. Those who are like me have to do tests in the finger very often as the INR changes a lot. So many things can make the INR change. Weather, flights, food, exercise, alcohol, drugs etc etc.

[Beckysuec in reply to Lure2]

Your input had been invaluable. Keep well.

[sailorbaejon]

Hiya, I saw my consultant yesterday, and spoke with her about the CoaguChek.

As mentioned elsewhere on here, she flagged that the reading for APS patients can be higher than venous, often between 0.2 to 0.5, and that the discrepancy is usually higher with higher target INRs.

However, she was pretty chill about it, said it’s more important to be aware of that, and to be clear with the Anticoagulant clinic about readings.

She also recommended that for a minimum six tests to do venous and self test at the same time, and to compare to see what - if any - difference and how consistent the difference is.

My target range is currently 2.0-3.0, but the steer from her team is that anything between 1.7 to 3.5 is nothing to panic about, just to discuss and ask the clinic to consider a tweak to the dose.

But the point was that if submitting just a self test reading, and if you know there’s a consistent difference, then to make sure the clinic are reminded every time, and so they know about it so they can dose accordingly.

I came away from my appointment feeling positive and very reassured, and it felt like I had a great understanding of what to do and how to handle it all. Yes, there might be a difference in readings, but providing it’s consistently different then that’s manageable.

Maybe I’m lucky to have such a great and supportive consultant (Professor Hunt at Guy’s and St Thomas’s in London), but my mirrored advice would be to try not to worry too much, test regularly when you’re not certain, esp if you know anything changed in your diet, and try and get regular venous tests done to make comparisons.

And maybe I’m lucky that my readings are generally not much up and down so far (although I focus hard on my diet / vitamin K, and don’t drink alcohol), so I guess the issue will be for those that who have wildly varying and unreliable readings between venous and machine tests, in these cases there’s not much I could say except to use a self test as a very rough guide (eg if on holiday) and to then have a venous test when possible?

Take care everyone, be good!

Hugs

Jon

[Beckysuec in reply to sailorbaejon]

It sounds like between your team and your self-advocacy that you are managed well and living your life to the fullest. I think of your journey and how having APS does not have to define a person. It is just an obstacle, like many, that one has to work around. Thanks

[sailorbaejon in reply to Beckysuec]

Yes, I have genuinely embraced my APS, done all I can to understand it, and maybe I’m lucky, but I have been able to live a pretty full and normal life. It’s just careful diet management, dropping alcohol, no rough and tumble exercise (I used to do a lot of obstacle course running which isn’t allowed anymore), compression socks on flights etc, but other than that it really is just business as usual, and as my consultant says, “just keep taking the pills”.

I have had at least one more TIA that I know about since starting warfarin, but that seems to be part and parcel of the condition, and with the warfarin these shouldn’t (fingers and toes crossed) become full strokes. I have an MRI next week to check for any other episodes since last MRI a year ago, and then I think they’ll up my target INR slightly. It seems to be a fine balance between TIAs and risk of bleeding.

I find that asking lots of questions does get a lot of response, and my consultant prefers that her patients don’t hang back with any concerns, and she encourages me to spread my positivity. I’m lucky to have her on my team!

Cheers

SBJ

[diamondgirl902]

Hi Beckysuec are you in the UK?

I suffered a stroke aged 34 where I tested positive for LA. They also found a PFO but never closed it. I tested positive for LA 16 weeks later at another hospital, but I was never given the diagnosis of Hughes Syndrome/APS.

Last year at the age of 52 I suffered another two strokes.

I mentioned APS to the stroke consultant and all 3 tests for APS were negative in March after my 2nd stroke. I'm unsure if they tested for APS antibodies after my 3rd stroke last September.

[Beckysuec in reply to diamondgirl902]

You have had quite the journey. I hope your strokes did not leave you with ongoing issues. My thoughts are with you. I do recall that when I had a stroke at 37, after being misdiagnosed with multiple sclerosis for 10 years, that I had to retest for LA but I do not recall the duration between tests. In the 25 years I have had this diagnosis, I believe I have only been tested for LA about five times. As I understand it, my specialist did indicate the profile can change over time. But as I recall her saying that they would still consider keeping a person on some sort of blood thinners. I live in Calgary, Alberta in Canada. Thanks for reaching out.