What INR self testing machine is recommended and where should I get it from..?!

[loppylou68]

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 

[Manofmendip]

Hi loppylou

I've just sent you a PM about this.

Dave

[HollyHeski Administrator in reply to Manofmendip]

Hi, can you send me details as well, thanks

[Hidden]

Please contact me directly at the charity as we have a loan scheme available for members.

[e-mail]

[MaryF Administrator in reply to Hidden]

Great stuff.   MaryF

[loppylou68 in reply to Hidden]

Hi Kate did you receive my email?! 

[Hidden in reply to loppylou68]

Yes thanks. I was on leave on Friday so have a backlog to get through - I will reply to you by the end of the day though

[Mkat in reply to Hidden]

Hi, I have Hughes syndrome and I wondered where I can hire an INR home testing kit? Thank you. Karen Thompson ([e-mail]

[Mkat in reply to Hidden]

Please can you tell me where I can hire an INR testing machine. Many thanks. Karen Thompson

[stillwaiting]

The loan scheme is fab. I got to practise testing before investing in my own machine. My consultant was very impressed.

[edgewater100]

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

[loppylou68 in reply to edgewater100]

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 😁

[Lure2 in reply to edgewater100]

Hi edgewater100,

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.

Best wishes from Kerstin in Stockholm

[edgewater100 in reply to Lure2]

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

[Lure2 in reply to edgewater100]

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. 

Do you agree with me?

Best wishes from Kerstin in Stockholm

 

[YvonneW in reply to edgewater100]

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.