I would be very interested to hear how this is done practically, and how different clinic’s policies on self managing might differ.
I bought a CoaguCheck XS machine in September 2011, and let me just make it clear that I am not waking up the debate that has been raging here previously! I am merely explaining my research and experience so far. I was told by Roche that since I had APS I was not a good candidate for a CoaguCheck machine, I didn’t buy it there and then but took a week on the Internet researching this issue. I found that many places it was referred to ‘a small minority’ not being able to use the machine, and when they were not able to, these patients would get an error message on their machine. I got Roche to confirm this too; as long as you actually get a result on your display, you can trust that result, but if you are not a suitable patient you might just get one error message after the other. I decided to take the chance and bought a CoaguCheck XS when on offer for £200.
And I am so happy I did that!!
Since then I have done testing parallel with weekly venous samples at my local hospital, I have 19 tests so far, of venous sample INRs and my own INRs take within 5 minutes – I do them in the blood room before I leave so I know they are taken at the same time. Most of the tests have a difference of 0.1 or 0.2, mostly my machine is higher. A few of the tests have a difference of 0.3, that’s all. My haematologist calls this difference ‘insignificant’.
Now I am more than ready to move on to self testing, and as soon as possible to self managing, both of which has been approved by my haematologist at UCH in Central London. But it is my local hospital in Newham that manages my INR, as it is a long way to travel in to Central London, and although my haematologist here at my local hospital also agrees that I can start self testing, I would be the first patient they have ever had who would be self managing – and they don’t really know what protocols to create for me. I even get the impression that self testing is a bit of an issue, I haven’t been allowed to start yet, they are dragging their heels because of the APS diagnose - although I have very good results to show for that my machine is consistent with venous samples.
I would very much like to know how people that self manage get their prescriptions for Warfarin. Currently, I have to go with my yellow book to my pharmacist, he copies the relevant page and faxes it to my doctor office, they faxes back a prescription for 4 weeks according to the dose written in my yellow book. If I start self testing, or even self managing, I won’t have a yellow book to show the pharmacist. In my borough you are not allowed to get Warfarin on repeat prescription, it can only be given by showing your yellow book. Is there anyone who has Warfarin on repeat prescription so you can just order when you need more? If you self manage, how do you get new supply of warfarin?
If you self manage, or even just self test, who is responsible for you, your hospital or your GP? Or is St. Thomas responsible for your self management? I have just had my first appointment at St. Thomas. Yay!! …but there were so many things to talk about that the issue of self management didn’t come up.
I am seeing my haematologist at the local hospital next Tuesday, I need to come armed with information for her so she can set things in motion, and I want to start self managing as soon as possible! All relevant information is very much appreciated, as my hospital needs to create new rules – they simply haven’t done this before