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?
Pete
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MeerB
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It is true that many doctors (even those who understand APS) are afraid of a bleeding. But I wonder how you could have 10.0 in INR!? Then I wonder how often you take a test at the coagulation clinic? If you test at least every week it should not be that high..
It is very dangerous to stop warfarin without other anticoalationdrug when you have APS. I started with Aspirin which works in quite another way than warfarin, but i needed something "stronger".
Warfarin is a cheap drug and in Sweden now they have understood that it is better to selftest at home than coming to the coagulation clinic and test every week as I used to do. I have now learned to handle my own coagulation and only go to the hospital every third month to double-cheque.
It is so sad that there are doctors (not APS-doctors) that do not understand how dangerous it is to be below 3.0 in INR and how important for us with APS it is to have a stable INR.
Yes, we are on the same wavelength. I am afraid I am going to have an uphill battle getting back on warfarin. I really want to do it right away as my ability to function is greatly diminished. I run my own business and right now it is all smoke and mirrors to keep my customers happy. That is why I am trying to gather as much "ammo" as I can prior to my appt. with GP next week.
My one saving grace is that my Hematologist strongly considered keeping me on warfarin indefinitely because the cause of my DVT was not figured out and also my brother has had the same problems (DVT, PE, Lymphoma). So I may have to work the angle of threat of repeated DVT more than get diagnosis of APS at least in the short term. This could be a challenge, with getting approval from insurance co. (But, logically - cost of warfarin is a small price compared to cost of PE or other complications)
My "therapeutic" INR was 2 - 3. Sometimes mine crept up to under 4. I'm wondering if my health would be even higher than the 80% good health I was feeling on warfarin if I were to keep it up in the 3-4 range? To answer your question on the issue with law suit vs.supply of warfarin, I think it would be somewhat easy to work the system by adjusting your diet etc. to "bump" up the INR levels a little. The only thing with that is you would be obligated to go get it checked much more often, which for me costs about $50.00 each time. So probably not a good long term solution.
On another note. I tried to elevate my INR naturally with diet and suppliments and some alcohol. It seemed to have no affect except an elevated liver enzyme.
My guess is that it will be a very long time if ever that the medical profession works this issue out.
The way I see it is that it is easy to forget that warfarin is a highly dangerous drug and that is why it has to be monitored regularly. Each APS patient will probably be on a different dosage that may vary from week to week.
Someone will correct me if I am wrong, but I think there is some debate about the range amongst APS specialists because of the risk of bleeding.
I have been on warfarin for 6 yrs and wish I didn't have to be. It does not give me the quality of life I wish for, but it helps. My clinic try to keep my inr around 3.5, but it is tricky.
I am not sure it is entirely fair to suggest doctors do not like self testing; many, like mine, are happy for me to do so provided I do it with the guidance of the clinic. Also a lot of people can't afford to purchase the machine or test strips if their CCG will not prescribe them.
Warfarin is, in fact, a very cheap drug. There are some drugs that a GP cannot prescribe without a consultant's say so; warfarin may be one of them?
Lastly I don't believe doctors would not prescribe warfarin for fear of litigation, at least not in the UK.
At the end of the day each APS patient is different. Some manage with aspirin, some with Clopidgerol, others with Heparin,and others warfarin. The key is to find the right consultant,and that is where the foundation is so helpful in providing a list of names.
As you say the key is to find the right APS-doctor and get the correct anticoagulation! We are happy you and me, to be able to selftest whenever we think that we need it.
As I have posted before I have a theory: that what today is called "Hughes/APS" will one day be sub-divded into more specific diagnoses depending on exactly what part of the coagulation cscade triggers the immune response. All of us who have consulted this site regularly are well aware that we are all different and the best medication at the best level is often discovered through trial and error. Perhaps someday, as the exact biochemistry is documented, doctors will be able to use future blood tests to match each patient with that perfect medication and therapeutic level.
For the time being the best scenario involves a partnership between an aware, educated patient and an erxperienced sensisstive listening doctor. But without more detailed diagnoses and suggested therapies, each doctor is more or less on his/her own without the securiityy of effective established protocols. Its a tough disease to treat.
The target INR debate is an old one and it is a shame that we seem to be going backwards and that it still rears its ugly head. As I recall, the general advice and recommendation for warfarin users was a target below 3.0. Over that target was thought to have no benefit but increased risk from bleed.
But all that was for people who didn't have APS.
I think it was Dr Kamashta who came up with the paper recommending above three for some of us, usually those who had experienced an event of some sort. The key was finding someone who knew about Hughes/APS and them, making the case with your GP.
For me the potential arguments went away when Prof Hughes wrote to my GP recommending my target of 3.8 to 4.0, and self test every other day. It was also probably helped by having multiple TIAs when my INR was 3.3. I have also seen several other APS specialists who were made aware of my target INR and have not raised any objection to it. My GPs will be aware of that fact. I find them very accepting of the target, the self-testing, and the self medicating. (Can you imagine the hassle of them testing every other day- even now that they are using a Coaguchek professional version).
My GPs also appreciate the fact that everytime I see them with a problem, and you will all know how we keep surgerys busy, I can tell them what my present INR is, very helpful with some issues, and assure them that any medication changes that might have an effect on my INR will be closely monitored. Having patients self-test can be a great help to ones GPs and should not be overlooked.
Well, I didn't think the question of INR would be described as an 'ugly head' - even if it has been raised in the past.
There still seems to be a group of people who have APS and are not medicated in the way that they would like, and whilst some countries agree that some (all?) patients taking Warfarin can self-test and medicate, it doesn't seem to be as widespread as clinic run testing/dosing.
I suppose that once people are allowed to self-test and medicate, the whole problem just goes away for them, if not others.
I self test but don't self medicate. I phone the clinic on given dates or in between if I need to and am told which dosage to take. My inr was set by St Thomas so the clinic has to adhere to that, although initially the GP in charge was concerned because my range is 3-4 which is higher than most patients.
But that doesn't make things go smoothly for me as being on warfarin and keeping inr within range is very difficult some weeks. And I am unwell a lot of the time even if within target range.
By 'ugly head' I meant that I thought we might have got over and succcessfully made the arguments that we had a few years back- that some needed an INR target over 3.0, and that we wouldn't have to keep on making the case. I had hoped we had moved forward on that one.
I'm wondering - Are any of you aware of people you know or have heard about that have had bleeding problems while on warfarin? OR more specifically while in their target range? I know my brother had what I think is called a large hematoma, but his INR was around 9 and he had had a fall.
I have not heard of anyone having a bleed, On the contrary; clots and DVTs and TIAs and PE etc.
I can tell you that in Sweden only people around the Stockholm area are on a trial since one year ago, to have a ChoaguChek and selftest for free.
My Hematologist is responsible for me! She is so afraid that I shall go too high. The clinic doublecheque every third month and as i practically never change the dose (I use the K-vit vegetable-way instead) I do not have to tell the clinic that I want to change my dose. In that case I have to mention it to them. They know me very well and also trust me.
I believe some of us have "more" sticky blood than others. There are different opinions of INR but I believe most doctors that know APS prefer that the patient do not get under 2.5 of INR and not over 4.0.
It was WRONG of me to say that I have not heard of a bleeding. I have heard of inner bleeding (hemorrages) but not so much and I know that Professor Hughes had said that it is much more often we have clots than bleedings.
It is good that we can give an antidot like K-vitamin in those cases when we are on warfarin. I personally have had no bleeding, not even when brushing my teeths.
I have been on warfarin for 9 years and self-managing with a Coaguchek XS machine for 8 years. My quality of life has improved greatly and I have travelled extensively world-wide. My target INR is 4-5 and I had one bleed into my knee joint when I tripped and fell heavily (I wasn't drunk - just clumsy!).
I have been warned of the risks of haemorrhage by so many doctors (including haematologists), but my wonderful consultant at St Thomas' (Prof. Beverley Hunt) has reassured me that the copious research they have done all indicates that an INR of 4-5 for a person with APS is equivalent to an INR of 3-4 for anyone else. The risk of clotting with APS is far greater than bleeding with an INR of 4-5.
It is frustrating when you experience symptoms and have to argue your case with uninformed professionals. There are some useful fact sheets on the hughes-syndrome.org website to support your arguments. Good luck.
I've been on warfarin for 16 years now for APS and my rheumy initially started me at 3.5-4.5 because I had a stroke and a few tia's. Gradually over the years he's felt that the risk/benefit ratio changes to a higher risk of a bleed vs clot as I get older. I've always had the same doc and I trust him, so now that he's keeping me at 2.5-3.5 I'm relatively comfortable with that. I did have a friend who died of a cerebral hemorrhage (no trauma) whose INR was kept at 4-4.5 (not for APS).
I don't know what I'd do if I didn't have my own coaguchek! I report INR every week via the computer and if I'm out of range the nurses call and ask me what dose I want to take to get back in range. A great system because they trust me. I don't get excited if if the INR is too high, but they're required to document for the chart.
Does anyone have that paper regarding INR levels by Dr Kamashta? I'm wondering if it's a recent date, because I've read that there's been some thought revision at the international conferences as more research has occurred in the APS field. I'm afraid I don't have that documentation though.
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