Antiphospholipid Antibody Syndrome (APS) - SAY NO to Home INR and Finger Stick Machines!!

Source: http://z10.invisionfree.com/Hughes_APS_Support/index.php?showtopic=9796

This will blow your mind!! I don’t know if it’s ignorance, or what the heck is going on, but wait till you read this. I will put my comments at the end. This blows me away. The different colors are just to separate the posts from each other.

Can u hear me screaming !
Had inr Clinic this afternoon...my machine said 5.3...the clinic 7 !!!
so just rang Roche their trying to tell me because the clinic doesnt use their machine and its a differant make that my inr wont tally...well what good is that to me confused.gif
I told her my machine is pretty much spot on apart from these last few weeks....
I wouldnt have bought a machine i said if it wasnt to give me readings i mean for goodness sake do they tell u that unless the clinics meachine is their make then we wont get a correct inr grrr...shes speaking to her supervisor and calling me back....

(sorry) to hear that you are having trouble at your inr clinic.
I have much the same trouble when I go to the surgery to have my blood pressure checked. I get the impression that they do not like us doing things ourselves.

It is quite common to get different readings from different machines...
My hemos office uses the pt/inr/ratio one and it is different from the vienous draw at the hospital. I do have the LA so that may be why? Do you have the pos lupus anticoagulant? I would not blame it on Roche... it seems to be a common issue from what I know on other home testing machines as well.
But i do know how frustrating it is. I am waiting for the day that we wont have to test...hope its in my lifetime!

mines playing up at the moment, too ……, but i am wondering if i am having antibodies that i don't normally have?  cos thats when the readings can go wrong i think, is that right?
I am going to contact Roche tomorrow and see if they can help any. I have tried different test pots and that but havent cleaned it yet, as i am going to ask em where to get the alcohol from, did get the vodka but drank it hehehe! (no not really, never drunk vodka actually!, drank lots of other stuff though)
will let you know how i get on, hope they can help us both, is yours still under guarantee?

That's frustrating, (name-removed), but I think it would be good to get the machine checked against a number of blood samples. A one off doesn't really tell you much, and who's to say it's not a hospital error with your sample?
I self manage, so never know what a clinic test would say in comparison to my machine. Makes me think that maybe I should do the occasional comparison.
I do remember that Roche have always said that people with a +ana need to be aware that they may have inaccurate test readings... It's all rather an inexact science, isn't it?
Do let us know what they say.

well seems the girl was calling me from a call centre in Germany !
Spoke with …… who has given me a phone num which i have called and left a message.
The girl panicked me by saying oh how high it was etc etc and if i need to call an ambulance...than when i said it had been 10 she almost fell off her chair i feel sure i heard a thud
if she had spoken to someone who is not familiar with an high inr she would have scared them for sure.
don't get me wrong …… i am not blaming Roche just saying that i was given confusing information.
My machine as always been spot on when checked against the finger prick at the clinic.
…… anti bio do make a diiferance to our inr...
anyway hopefully going to have a venous test tomrrow so will let u know how it goes

I was also told that the hospital tests (vienous) are always slightly different to the finger prick tests....don't know why.I have found mine is usually the same...
I have found Roche are pretty good and the machines are usually quite accurate.
I hope todays test will go ok .....I know you havent been to well for a few weeks...maybe Ally could be right...some different antibodies that could be cocking up the result?
Let us know how you get on

could you send me the number to call cos i think he was probably German or certainly had an accent of foreign kinds! bet i have called the same number.  
my inr is just dropping so maybe it is the antibiotics, thanks honey, totally didnt think of it
its great this site eh, we keep each other going eh

thanks chick, but they have just called me
I am going to get 90 % isopropanol (sp) or 96 % ethenol to clean it first, then if its still giving way out readings, they are going to send me a new machine.
He was lovely (calling from Germany) and said if the range is 2.0 to 4.5 then they work on the thing that between 10 % to 30% difference is acceptable for the machine, but as mine is much more different, then that is unacceptable.
So sounds fair to me, will clean it and see what happens next smile.gif
and hope your venous samples ok chickie, i have mine done everytime like that at the hossie too

they have just called back again, to say they want me to use some strips that they are going to send me, at the hospital at the same time as the venous bloods taken. and to test at the same time with my old strips too.
then record the results and phone them with what they are.
so will see what happens next!?

i have received the test strips today and my inr with the new ones is 3.8, test with the old one comes up at 3.4, 3.2 so am wondering if it could be my test strips?
the code i have at the mo is 267, wondering if yours is the same batch?
p.s.! i found another box of strips which are a different code and they are testing me at 3.7 so thats what makes me think its probably those strips which are cocked up!

wonderful news that you have gone to all that effort honey...sometimes it pays off to just do a few more comparison tests.
good news that Roche sent you out the other strips to try.......and had offered a new machine if the problem had still be there.
…… hope you manage to get the probs with your machine all sorted.....check the strips like …… mentioned

update...
new test strips and chip and its still out.
Hospital test from yesterday 4.1...mine 4.9
so just spoke to them and their sending me a brand new one !! should get it in 3-5 days also a jiffy bag for my old one wow...what service is that !!
my inr mon was 7 and 4.1 yesterday ...but i missed a dose mon ...it had to be done...
it was horrid yesterday...they took my blood then just let it come out to take some for my machine yuk made me all quesy !!
inr clinic later today

omg! really they did that! yuk!!!
glad they are sending you a new machine

hiya what number did you call please hunny?
they are saying that 1.0 is ok for the machine to be out, and that they are different readings to the hospital inr
apparantly its like comparing celcius to farenheit?
dead confused!

OK…did you make it through all of that mess? Sorry about the spelling and the language…I believe most of the members of this forum are from overseas and they talk well…you read that mess, right? Anyway…let us review.
So the machine is off…the person asks on this forum…is given a number of reasons why it could be off…antibodies are different, +ana, the machine is dirty? (that’s a new one…and I have more on this!), the strips are different…etc. BUT…they NEVER blame the company!
The company KNOWS these machines don’t work with APS patients. They have it in their literature. READ THE PAPERWORK, people!!! They say that ppl with a positive ANA may have false readings…but hey it is ok for you to use with your APS?!  And no comparison...so how do you even know it is accurate?!
Hell, how do you EVER know it’s accurate unless you do comparison draws every.time.???

Source: http://z10.invisionfree.com/Hughes_APS_Support/index.php?showtopic=9796