Having looked around a lot of the threads here and documentation surrounding APS, it strikes me that those suffering with APS report that they enjoy a better quality of life when their INR is above the ‘recommended therapeutic level’ of 2.0-3.0. Some say that an INR of 3.5 to 4.0 or even higher is what they need to feel that they are properly medicated. Many report struggles getting their doctor to agree to this, and it’s almost impossible to self-medicate, because the higher the INR goes from what they want, the lower the amount of Warfarin they prescribe. Patients cannot lie about how much Warfarin they’re taking, and rightly so, but patients are beholden to the INR tests conducted at INR clinics.
There are a few who can self-test, but doctors do not like self-testing. They seem to want APS patients to adhere to the 2.0 to 3.0 ‘rule’. This, I think, is because they fear that the higher the INR the greater the risk of haemorrhage. If a doctor were to agree to medicate a patient with a target INR of 4.5 – and subsequently the patient bashed their head and died of a brain haemorrhage, the doctor could be sued. Any half decent advocate could present evidence supporting the dangers of a high INR, and even a disclaimer signed by the patient would be ruled as invalid as it would be argued that the patient did not have sufficient understanding of the implications.
Similarly, many people on Warfarin report that they do not feel any negative affects of a high INR. Some do not even know when they have a high INR. I was once called by my GP telling me that I had an INR of 10.0 – and to get to A&E immediately. I did not feel anything. I nearly decided to merely leave off the Warfarin for a few days. I did go to A&E as instructed.
At the other end of the spectrum, there are those who have suffered a DVT/PE/TIA/Stroke – and then been put on Warfarin for six months. They have been diagnosed as having APS, but after six months they are taken off Warfarin and then suffer a reported lower level of health. They are told to take aspirin. Also, people diagnosed with APS and not having suffered a thrombotic event, are merely told to take aspirin, as ‘going on Warfarin is a big step to take that we’d rather not take’.
To my mind there are two things going on here. Fear of being sued, and trying to reduce costs to health providers. If word got out that Warfarin makes you feel better, there could be millions of people knocking on surgery doors asking for it. Those diagnosed with APS have a very real need for it – maybe more so than those who have suffered recurrent thrombotic events without APS. True, those who suffer recurrent thrombotic events (without APS) are advised to take Warfarin ‘for life’, but they get by quite happily on an INR of 2.0-3.0 – which doctors like better. Those with APS seem to need a higher INR which only doctors with APS experience might agree to. Those on aspirin have a miserable existence meantime.
I can see both sides of the argument here. But what it boils down to is quality of life versus possibility of trauma with a high INR. Surely the medical profession should iron this out?