Hello,
I have been diagnosed with APS for nearly ten years and I'm looking into doing self testing.my doctors is fully behind me and will provide the strips on the NHS.
I'm just wanting to know peoples experience of self testing.Both good and bad.Accuracy is probably want I'm most interested in hearing about.
Many thanks
Congratulations for having the possibility to selftest and that your Doctor also stays behind you.
I live in Stockholm and have selftested 4 years. I have also Lupus Anticoagulant (one of the antibodies).
I use an CoaguChek XS. I test mostly every second day. I doublechequed with the lab at my hospital the first years because it is often a discrepence between the machine-INR and the lab-INR tested in the vein. My machine-INR is usually 07 - 1.0 higher in INR depending on the INR-value that special day. When the INR is very high the difference is bigger.
The key is CONSISTENCY in what you eat and drink and what drugs you change. I eat a lot of green vegetables rich in K-vit every day. If the INR is too high you can eat a little more vegetables rich in K-vit. If the INR is too low I have to take a Fragmin shot. I have not yet had to do that.
It is very important to WRITE DOWN as much as possible. What you eat extra, drugchanges, viruses, antibiotica, extra exercise etc.
I have a therapeutic value of 3.2 - 3.8 in INR. Today I only go to the hospital for a vein-test every 3 months and I monitore my INR myself and decide if I must change my warfarindose, which I do very seldom.
Good luck!
Kerstin in Stockholm
Hi Kerstin,
As I replied to the person that was enquiring about the strips etc, I noticed your reply. Your right it's very accurate, if mine went below 1 or above 8 on the machine, that was the only time I went to the hospital. If it was below 2.5, I had to self inject Fragmin. It takes time injecting yourself, but believe me once you do it once, your wonder why you worried. I practiced on an orange for a while, it's quite similar, but it worked. I've just finished a course of 10mths twice a day injecting Fragmin, but because of my medical problems with my blood I'm now on a new tablet, twice a day, and it's great because I don't have to use Fragmin or Wafarin, and no longer have to go to hospital as much to test my INR. (It's completely set up).
I wish you well.
Tina (London).
Hi, It sounds to me that your selftesting-machine did not suit you well for several reasons. So sorry about that.
I wonder how often you selftested when you only went to hospital if your INR was under 1.0 or over 8.0? What therapeutic level had your APS-doctor put you on?
An INR of 1.0 means that you are not anticoagulated at all. Before we start Warfarin we usually have an INR of 1.0
Did you eat more vegetables rich in vitamin K when you INR was so high as over 8.0 or did you reduce your tablets?
Now you have another drug and you do not need Warfarin or Fragmin anymore. Hope this new tablet, which you take twice a day, suits you better.
We learn so much, good and bad, from eachother on this site and I hope you do not mind my questions.
When we start selftesting it can take some time before we understand how the INR, the warfarin-tablets and the K-vitamin work together.
Kerstin
Hi, I have APS & had a fair share of DVT's & PE's, and I was given the machine & test strips when they first did the trials with the first machine made by Roish, it worked, was big & quite heavy, but it passed all the medical testing. Now you have to buy your own machine (unless your GP agrees to buy it), the machine is small & flimsy, & it uses the same strips (which you get of your GP). It works just the same, very accurate. It's ashame that I cannot no longer use it because of other problems, but it was so easy & I could test anytime anywhere and know that my blood was fine.
I wish you all the best, and I hope it's cleared some of your question.
Regards
Tina
Hi, I've been self testing now for 10 years since my replacement aorta valve. I also have the CoaguCheck XS and find it very good indeed. At first I like many others I was always worried I was doing the right thing, but as time goes by your confidence will build up and I'm sure you'll be perfect. Very best of luck.
What is important is to find the difference between the machine-INR-value and the lab-INR-value in the vein.
I have Lupus Anticoagulant but I have learnt that even if you do not have LA (the antibody, not the illness Lupus) there is often a difference between the machine and the lab. My difference is 0,7 - 1,0 between the two.
I have heard an APS-member here on this site, that only had a difference of 0,1 - 03.
This is the only problem to be well aware of if you are going to selftest and have APS (in my opinion).
Kerstin in Stockholm
Sorry I've left it so long, I've had a big of a rough time lately. I loved using the machine, it worked for me, the only thing that did annoy me was that the machine that I had was a robust solid machine, when Roish decided to change the machine, firstly you had to buy it yourself, and when I received it, it was so flimsy. But as for self testing, it was great, I really don't know why they decided to put me on Riveroxoban, I still got clots on any of the Anticoagulates. I had a clot when my blood was 4.2, it was massive and it was behind the knee. But I'm now back on self testing, and at least there is a antidote for Wafarin but not Riveroxoban.
Sorry for the late reply. (I need a holiday) lol.
Take care,
Regards
Tina
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