Yesterday I was told by the specialist at Guys and St Thomas that I need to self test 3 times a week and that I need to get my own INR machine now. He was however very vague about where from and which type and the costs involved. Having looked at them and with it being such an expensive purchase does the Hughes Foundation recommend a particular make and model firstly and then what is available on prescription ect.....
I also was told I have to get a blood pressure machine and take daily readings again is there a recommendation
Any advise welcome thanks
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loppylou68
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I live in the US and have been instructed by my Hemotologist the only true way to get an accurate INR for someone with APS is a plasma draw from the arm
That's going to be a little difficult to do at home 3 times a week....
I have however noticed a vast variation though just at my local hospitals anticoagulation clinic,. When the machines are broken (this happens Alot) we have to have blood drawn and wait for lab results.... Thanks for the info though 😁
So in other words he does not allow selftesting as a help of contolling the INR. I have Lupus Anticoagulant and I use a CoaguChek XS from Roche since 4 years. I selftest 3 times a week.
This is the only way for me to be able to keep my INR steady in the right level between 3.2 - 3.8 which my Specialist says is utmost important.
The self test is not a true/ accurate result for people with APS, I go to the University of Kansas medical center and it is in their protocol for APS, my INR target is the same as yours but the finger stick is not accurate because of our condition
You are so right that a finger prick test alone is not accurate if we have not compared it to the vein test at a lab.
But when I selftest i know there is a discrepence between the lab stick in the vein and my CoaguChek XS between around 1.0. So if I have 4.5 at home I may have 3.6 at the hospital in the vein. The discrepence must not differ more than 0,1 - 0,3 from time to time. The two tests (at home and at the lab) should be taken within 3 hours. I do dubletests every second month at the hospital to feel absolutely secure.
This is allowed by my Hematologist at Karolinska Hospital here in Sweden and also with the Coagucheque specialist. It works for me as I selftest every second day. I also have Lupus Anticoagulant which is said to make difficulties but not for me anyway if I handle it the way I do.
I agree with Kerstin. It is not entirely true that we can't self-test. Roche advise caution in their literature if you are lupus anticoagulant positive and this may affect the result. However, I have been self-testing for 10 years, with regular three monthly venous checks and the INR results are never more that 0.5 - 1 different.
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Should I get a second opinion? 
