INR Self Testing

After some good replies on my last post I thought I'd ask peeps opinions on self testing.

So Guys and Gals how do you go about it?

1. Do you buy or rent the equipment?

2. How much are the test strips

3. Do you still need to go in for INR testing once in a while?

4. Does the equipment need servicing?

4. Overall, weighing up the costs and ease of self testing would you say it's a for or against self testing?

Guess there's no right or wrong answers but would love to hear your experiences

Take care

Mark :-)

19 Replies

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  • I presume you are in the UK?

    I have been self testing for 6yrs.

    I had to purchase my own machine.

    The test strips may be on prescription but you need to check with your GP. Mine stopped prescribing so I have to pay and they are expensive around £3 each.

    Every self tester will have a different experience. Some go it alone, although personally I would not do so as warfarin is a dangerous drug so wouldn't have the confidence.

    I work with my anti-coag clinic - self test at home, phone in the results when asked and get given the dosage. Twice a year I have to go to the clinic to get my machine checked.

    If you can afford it and have the correct support (it takes a while to get used to the machine) then give it a go. It gives you control so that you can test yourself if unwell, on holiday, different food or medication etc. and it saves time waiting at the clinic!

    Hope that helps.

  • Hi, I live in Stockholm so i have got it for free here. Also the strips. I do not know how to cope without it. Professor Hughes talkes about the importance to be able to selftest. You can feel a lot safer with it.

    Best wishes from Kerstin in Stockholm

  • I don't self test as on Hearin but if I could have done so I would. If you can take control of every aspect of this condition then so much the better. I'd say go for it if you possibly can.

  • Thanks for the replies all.

    I am in the UK and must admit I like the idea of self testing. It might prove cost effective as it would save the hour+ long waits and £2.50 car park fees. There is a warfarin clinic a couple of hundred yards away from where I work but because I live 15 miles away they won't let me in :-(

    My INR is quite stable at the mo. and my testing is 6-8 weeks apart. sure if that's a good thing or not!

    Any recommendations on a good reliable machine?

    Mind you it may be better to move to Sweden, They seem to look after you well in Stockholm Kerstin. :-)

  • Yes, I almost feel ashamed to tell you that it is for free. It is only around the Stockholm area though and it started last year. Mine is "CoaguChek XS". Roche.

    I go in for doublecheque every 8 week now. I keep contact with the hospital. I test myself every second day. My INR goes up and down at the moment quite a lot.

    Good luck from Kerstin

  • My understanding is that if you have the lupus anticoagulant in your blood the machines don't calibrate properly as it reacts to something in the strips. I don't want to fork out for self testing to find it doesn't work even though I would love to!

  • Hmm I have L.A. Thanks for the advice I'll have to check on that before buying a machine.

  • Hi, I self test and wouldn't have it any other way. I bought my Coaguchek machine and it's worth every penny. I get my test strips on prescription. I get 3 monthly check ups at the Hospital and have a my INR checked by giving a veinous sample of blood. At the same time I check my INR with my Coaguchek machine (which is usually very accurate). I also self dose my Warfarin. I have independence and better control and most definitely feel much safer being able to test twice weekly or more often if I am unwell or start a new drug. Maybe one day we will be encouraged more to take control and self test as Diabetics do. Good luck in your decision making!

    Avril

  • As AvsG the same I find it absolutely fantastic I can usually tell when my INR is out of range which if it happened at the weekend without the machine I would really be concerned.i also test if I feel unwell headache etc.

    I email my result to the clinic as they take ages to answer the phone. I get a phone call back if the dose of warfarin needs to be changed ( more than 1mg) otherwise I get letter in the post, if change 0.5 and when to test again.

    I really want to self dose as I know what I have eaten in the past few days and sometimes I think I know better!

    Self testing with a coagucheck machine is the best thing I have ever done, birthday Christmas present best Present I ever had

  • I must tell you that I am Lupus Anticoagulant and have all the antibodies in high titres. It is a discrepaence between the lab vein-test and the machine test. I had to doublecheque with the hospital for at least three months to start with. It is the same difference every time. If i cheque the INR at the lab the INR is one day 3.4 and my selftest no is 4.5. If I have a lover INR the discrepance between the two is a little less, mostly 0-7 - 0-8.

    You have to be careful and know what you do. When i lower the INR I do it with brusselsprouts. It goes faster than change the tablets. I never change the tablets. I test at home every second day. I love this machine.

    Kerstin

    .

  • Hi There, I love my machine which I've had for 6mths. Here in Australia my private health fund covered 3/4 of price of the machine. The strips work out to be approx $5 ea so it's annoying & pricey if you get an error. If anyone in Australia knows of a way to get cheaper strips please share. I have an agreement with my GP to have a bloodtest to check my levels approx every 3 mths and do a self test at the exact same time. My machine has been spot on both times. I love the freedom that the machine gives and the time saved by not visiting the doctor.

  • Hi im sorry to jump in on your post but thank u for asking this question as all the comments have been very useful to me too. I am wanting to go down the self testing route myself as constant visits to the clinic with a 10 mth in toe is not ideal :-)

    Its great that some of u have mentioned the machines u have brought as I do not know where to start with purchasing one so thank u. I asked at the clinic for there advise on what one to get and they r not aloud to recommend them so that was not helpful....thats another reason y I love this site. Thanks again and sorry for jumping in on your question :-)

  • Jump away gemgemz :-)

  • Hi again,

    I have read back that we haved "talked" earlier. I wonder if you have an antibody called "Lupus Anticoagulant"? I have that but i selftest as you have read above.

    I think maybe your problem is that they change your warfarin too often. Some clinics are not aware of how sensible we can be on warfarin.

    First of all write everything down. Changes in drugs. What you eat of K-vitamin (also how much of that) I eat broccoli most of the time. Every day and the SAME amount, if I do not want to make my INR go up or down. I never change the tablets (practically never) .I test every second day so I know how I react now after 2 years.

    If the INR is too high I can reduce it with brusselsprouts (I use about 7 brusselsprouts) I talk of freezed brusselsprouts and they are perhaps not so big as the fresh ones. In 24 hours I have reduced my INR with 1.0 (4.0 to 3.0)

    If I have too low INR it is more difficult. I takes almost 3 Days to increase the INR. Then I have to take 1/4 extra tablet and no K-vit rich vegetables till the INR is in range. I can also take a Fragmin shot but I have not tried that yet.

    You must know that we are all different. This works for me but perhaps not for you. I know though that we must make changes slowly and not reduce or increase food (K-vit rich vetgetables) at the same time as we change the tablets ( if we do that).

    You are welcome to message me if you want some more info. If I can help of course.

    Best wishes from Kerstin in Stockholm

  • In the UK you'll need to buy a coaguchek machine from Roche (based in Burgess HIll - tel 01444 256000) The one's for self checking have come down in price - around £450. (GP practice ones are around £800). You get a few strips with it as a starts usually. Some CCG's (clinical commissioning groups) will allow their GPs to prescribe the strips, but many won't and yes they're about £3 each - again from Roche. You should calibrate your machine with your GP's machine (or via a venous blood test - at the same time) - our patients bring theirs into the surgery, (usually 6 monthly - some annually) test themselves on theirs and then we'll test them on ours (most are similar or the same amount out each time e.g 2.6 vs 2.5 etc) but as the surgery ones are calibrated and tested on a quarterly basis using a university test site and tested daily we always advise that their machines are out by (so they either add on or minus). The patient then calls in their inr results and we dose. APS is very different to AF, but we have patients use their own for both (APS is normally more regular testing that Atrial Fibrillation patients). Means travelling abroad etc. is much easier - then they e-mail their results and we'll e-mail back any dosage changes. Check with your GP practice first that they are happy doing this (just in case).

  • Thank you Chrissybell, Some great advice there :-)

  • I have LA, but I spoke with my thrombotologist who agreed it was worth a try f my GP would prescribe the strips. My GP is awesome and he agreed. The warfarin nurses at my hospital run a 4 week course to self-text, and I am happy to say they signed me off last week. I asked them before I bought my machine how often a person with Hughes cannot use a machine and the nurse said there have only been 3 in all the years he has worked there.

    I got my machine from Roche. If you have a dx for APS you are exempt from the VAT and they have £100 off at the moment too. My mum bought it for me! It is the freedom from weekly visits to the path lab with my smaller kids, plus school runs to do. I can wait up to 4 hours for a blood test at the hospital.

    The final straw was a 3 week holiday and I needed to test weekly. This meant I lost 3 days of my holiday and my family were stranded at the camp site as I needed the car :-(

    The saving of hours spent at weekly checks, plus no more diesel and parking charges is well worth the £300 my machine cost.

    My hospital make you check your machine, your strips in their machine plus a vein draw weekly for 4 weeks, and provided they are all roughly the same, or at least stable, all is fine to self test. The new Coagucheck machines self-calibrate, but my hospital ask that you return every 6 months to ensure all is still in order. I can live with that! :-)

  • I'm in the UK and I self-test and self-manage. I bought the machine myself but my GP proscribes the paraphernalia. I've used it for nearly a year and a half and it makes life SO much easier as I only have to make the 3 hour round trip twice a year to have my machine checked. I'm also now able to adjust so I am in range the vast majority of the time (previously despite advice from St Thomas to test once every 3 days if out of range my GP would only test once a month so my inr would bounce around quite wildly as they would make big dosage changes instead of gradual ones). I wouldn't be without mine now!

  • I have been using the coagucheck since aug of 2013 and it has been so convient as I was having to drive about 30 min to dr office and wait an hour for a 5 minute test. Now I take the test, call in results to Alere home monitoring and if it is within my range all is well, but if it is too high or too low they contact cardiologist nurse and make adjustment to dosage. The initial cost of monitor is about $265. Then supplies of strips and lancets are more. Since I am on. Medicare and have supplemental ins. I pay nothing.

    I have also started experiencing fluctuations in my BP. When my INR is hi , my BP is low and it washes me out which then causes anxiety. I live with my daughter do they totally don't take me serious and I certainly wouldn't wish this on anyone else but I must say it is comforting to see that someone out there understands.

    I might mention that in addition to A-fib, I also have COPD and a pacemaker and in addition to warfarin I take a 325mg Bayer and BP meds. So BP has lately been like a Ping pong ball!!! Scarey!!!

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