Off Apixaban

Hi,

I was in asymptomatic persistent AF until my cardioversion in July and have been in NSR since. My consultant put me on Apixaban for a several weeks before the cardioversion and has now advised me that I can stop taking it and I had my last dose on Friday. My CHA2DS2-VASc score is 0 and I'm currently taking Bisoprolol and Flecenide as well as being as active as a desk job allows.

To be honest I hate taking drugs and the Bisoprolol makes me feel tired and lethargic, however everyone on here talks about being anti-coagulated and I am concerned that I no longer have that protection. My consultant says the risks of a bleed outweigh the benefits.

My understanding is that a clot is only likely to occur if I go into AF for a period of time and as long as I am in NSR my risk of a stroke is the same as a 'normal'person.

Is this correct?

Thanks,

Stuart

34 Replies

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  • Quite a few different posts and replies to posts (some under different posts) on this topic including a few in the last week. Search on BobD's profile and mine and you'll find our responses.

    There are quite a few EPs and others (and the number appears to be increasing) who believe that you should be on Anticoagulation for life or at least until a good old age. The scoring methods are not 100% comparable. Also when the % are small the risk of bleeding becomes negligible but the risk of a stroke, even though it may be small, actually has a devastating effect. I have seen what a sroke did to two in 40s and two in 50s. Also another who lived for approx 17 years paralysed from the neck down and could only grunt but whose mind was 120% there as his sister said.

    You can be anticoagulated if you wish. Don't forget that some of the scores (eg BP) never return to zero even if controlled.

  • I think most people know my view. You can always stop anticoags but you can never undo a stroke. In theory your consultant may be right but how much of a gambler are you?

  • I would always opt to stay on anticoagulants. I HAD 3 TIAs when uncoagulated because my score was 0. However, when I was forced to come off warfarin recently for medical reasons,My EP reassured me that I was unlikely to have a stroke because my AF was controlled by flecanide. He said that if I wasnt having AF I wouldnt have a stroke. I was suprised to hear this and was jolly glad to be put back on anticoagulants but Was a little reassured. I dont know if this is true but my EP certainly thought so. X

  • I'd like to believe this as well. Why though are we told that if we have AF our stroke risk remains the same even when we are not experiencing an episode. And this same risk applies after an ablation.

  • I believe the risk of stroke associated with AF when you are actually not having AF is down to other underlying heart issues that may have even been responsible for the AF in the first place. I have read papers on this and that is my conclusion. If you have 'lone' AF (no underlying heart condition) then I believe the stroke risk when in NSR is no greater than anybody else. However, so many peoples' AF is as a result on other heart issues and there lies the stroke risk in my opinion.

  • it seems logical because if you are not in AF then the blood flow is not slowed down and so why would clots form- unless you have other factors for stroke risk ( which would be reflected in one's Chads vasc score).

    It's true younger people have strokes but do they have other factors- again reflected in Chads vasc??

  • your risk is individual and is assessed by the Chads Vasc score as you have said. I asked a speaker at one of our AF patient support meetings why AF is not such a risk in younger people and he explained it is partly because the heart lining is still smooth, unlike our roughened skin elsewhere as we get older, so that even though the atria are fibrillating and blood flow is slower, clots are less likely to form. I don't know why your score is 0 but if it relates to your age the above might be of interest/

  • My CHADS score has always beenzero until I reached 65 recently, so now it's 1, but my EP has had me anticoagulated throughout and now for life.

  • The benefit of anticoagulation is minimal for you - if it were me, I'd wait until indicated for anticoagulation. One question is what your lifestyle risks are: if you like mountain biking or high impact sports - it would be highly risky to leap onto anticoagulation when the stroke benefits are still negligible. If you lead a relatively sedentary life, then there is probably no harm in going on them.

  • I'm with Bob here. The chances of having a house burglary may be low but if you can have some firm of security like good locks and an alarm whatnot use it? You never know when it is going to happen to you.

  • After seeing my friend unable to speak or move her left side I am glad to take my Apixaban twice a day prevention is better than cure

  • My EP is of the same opinion as yours. Lots of people on the forum and their EP's are not! I think this says it all - there is no definitive answer and there as many studies indicating one thing as another. It's all about weighing up the risks and benefits for you and YOU alone. If you have a CHADSVAC score of 0 then it is likely that the risks of anti- coagulation will outweigh the benefits for you but you and your EP are the ones to decide and of course things can change or you in the future and you may need to re-assess ! Unfortunately AF often goes hand in hand with other medical conditions which will affect a CHADS score - but in lone AF with no other indicators your score may still only be 1! I'm not anti anti-coagulant at all but I do think the risks are sometimes overlooked on this forum by those who are strongly pro and I also don't think that scare stories ( however unintentional) are very helpful to those of us who are struggling to decide what to do about this issue. I think really, we all know it's a little more complicated than that. After all I suspect a lot of us will know of people who have had a stroke with no previous indicators! I am in a similar situation to you and am shortly going to be given the option of coming off apixaban after a successful ablation . My CHADSVAC score is 0 and my intention is to stop - my EP strongly believes this is the correct course of action but that's for me. I wouldn't presume to tell anyone else what to do.

    Hope this a of some help and sorry for sounding off a bit!

    Ruth

  • Anticoagulation puts one on a tightrope and I didn't like the feeling of not being a normal person any more. I was persuaded to take Warfarin very much against my own will, but everyone (expect my husband) insisted. It completely took away my enjoyment of life and I found it very hard to be taking something I strongly felt was not in my best interests.

    The risks scared me very much because if there's about an 85% / 15% split, I'm usually there in the minority group. My blood group is AB (like about 3% of the population) and as I'm also rhesus negative (17%) that makes AB- about 0.6%. It's unsettling. Describe yourself in 3 words: 'does not conform' sums me up. I'm not left handed or right handed. I do some things one way and some the other. On top of that, do we have strokes in the extended family? No, except for two aunts when they were very, very old. What we do have is brain haemorrhages (and one swiftly fatal) among middle aged family members.

    I decided that I would rather bleed to death than to have a stroke. To refuse Warfarin with a CHADS score of 3 and then have a stroke would be dire. But anticoagulation made me feel hastened towards a sudden end to my life and I became scared of travelling by car, going out walking, gardening and even peeling potatoes. I was quite unhinged and it was a difficult and unhappy time.

    Three years on and life is very different. I have become complacent. I'm on Rivaroxaban which I much prefer. The much publicised lack of antidote scares me not at all and I feel I am taking a positive stand against the dreaded stroke.

  • Hi Rellim

    What made you change your mind?

  • In what way? If you mean why am I not so concerned now , it's because I've had no disasters whilst on anticoagulation.

  • There are a few things that need to be remembered when dealing with consultants, GPs and other medics. Most are good diplomats and politicians (with a small p) and are adept at keeping patients happy and smiling (yes there are some like Doc Martin who are blunt!!).

    If they have written a paper or given a presentation advocating something (eg continuing anticoagulation after being back in NSR even though not essential according to CHADSVAC) then you can be sure that, most of the time, that this is their view.

    However in conversations whether with patients quite a few blow with the wind or along the lines they believe the patient wants them to go along. This is exacerbated because many people ask closed questions and give the game away!!! I'll give an example (don't criticise because I know I am teaching some to suck eggs!!!).

    I was / am in persistent AF. After my cardioversion lasted just over 24 hours I saw my EP and asked what my options were. He said the only realistic option was, unless I was happy to let it continue as was, was for me to have an ablation as Flecainide appeared to do nothing. I then asked him to be open and honest as to what the chances of success were (he knew that I had read info on AFA site and other articles, etc). He said that it would take two or quite possibly three attempts . He said he would like to hope / think that it would last 6 weeks so that he could do echo and tests when the heart was in sinus rhythm but it might not last that long. IE no chance first time!!! This was a number of direct questions by me.

    The second way would have been to say something like I have read that the chances of first time success are between 30% and 70% and you do think that this could be for me. The answer could then have been something like "yes" or a "good chance" because he knows that is what you want at that point in time. However if you peel back the onion layers a number of things have been mixed up. Firstly the first time success rate for someone in persistent AF if 20% to 30% and for someone with paroxysmal 60% to 70% (some EPs are adding 10% but neither here nor there). However he was not incorrect because he was saying that yes you had a good chance of being in that 30% success band - but note that you had a better chance of being in the 70% to 80% where it did not work first time.

    The same goes for anticoagulation. If someone says I have reservations about taking an anticoagulant for life they will go along with your fears unless they are diametrically opposed to your view and even then some will be very diplomatic to say the least.

    A few years back within a couple of months of each other two people I knew (but they didn't know each other) saw the same medical consultant about similar problem. The answers and info he gave were very significantly different because he was "playing" the patient in both cases. Both came away very happy!!! I didn't cross enlighten them though but I must admit I did have a good chuckle to myself.

    I was always good at the use of English and logic and had to use these extensively in my work together with understanding and knowledge.

    I am not saying that you did this - just reminding generally.

  • Does that mean you will be med free Ruth?

  • Yes! The prospect is quite an exciting one 😊.

    Of course I have some anxieties it'd be crazy to say I don't have all the concerns discussed in this thread - most of all I worry about what I will do if the dreaded AF returns at some point but if my experiences over the last couple of years have taught me anything it is to make the most of good health when I have it and try not to worry too much !

  • You said you were terrified of taking Warfarin but that now, even though there is no reversing drug for rivaroxaban you are happy to take it. I just wondered what made you feel differently......

  • I've had no problems, no accidents or dramatic bleeds and nothing has gone wrong. I felt I was putting myself at risk but I've been fine.

  • I should perhaps add that I was so glad to escape the clutches of Warfarin (which in two years never got onto an even keel) that Rivaroxaban seemed like a friend in comparison. I had quite expected a nagging feeling but I don't have it and have become considerably braver about things like walking on uneven ground.

  • That's really good to hear. I must say I agree - when I first started on apixaban I was really concerned about any even a minor cut or graze but 2 years on I hardly give it a second thought & I'm notoriously accident prone too!

  • Me too. Good at suddenly finding myself at ground level. Over the years I've had a few fractures whilst out walking.

  • Thank you for all your replies and thoughts.

    I like to generally deal in definitives and it appears that it is not possible to do that with medical science - just evaluate risk based upon previous studies. It worries me that I am not anti-coagulated but conversely haemorrhaging is also a concern.

    I do not like taking medication without just cause and I have no issue with taking Apixaban if needed as far as I'm aware I did not suffer any side effects; I would quite happily stop taking Bisoprolol and Flecanide if that were possible. My lifestyle is now riding my bike when I can, watching my diet, keeping hydrated, reduce stress (hard one with AF and these kind of dilemmas) , and generally all the things we are advised to do.

    I have always respected doctors and believed they have the patients best interests at heart when deciding a treatment plan. Yes, I know there are bad ones, particularly in General Practice, but I am generally happy with the treatment options so far. My consultant must have seen hundreds of people with AF over the years' and is best placed to advise me.

    However, I will raise it again when I next see him and discuss the differing opinions of his peers.

    Stuart

  • Unfortunately definitives do not work much of the time in medicine. Many facets are much more of an art than a science and results and outcomes are not always predictable.

    This forum supports this in many aspects!!!

    Put 4 EPs in a room and you could get 4 different answers and they could all be right - just not on the same patient at the same point in time !!!

  • We probably all know people who have had serious effects from strokes. But how many of us also know people who have suffered a brain haemorrhage, with a very similar result? ie HASBLED needs to be looked at, as well as CHADSVASC, and the two risks balanced.

    Also, no-one knows the long term effects of NOACs. Will someone who starts taking them in their 40s still be able to take them in their 70s?

  • You make some good points Polski and yes hasbled has to be reviewed as well as chadsvac.

    Most of the discussions on here are people in 55 to 65 and some to 70 who aren't on Anticoagulation long term.

    Most people don't know of somebody who has died of a brain haemorrhage simply because the number of them is far smaller (only a fraction of) the number who suffer a stroke.

    Those of us in the UK also need to be cognisant of the fact that we are almost the worst in Europe (and we are the worst in western / Northern Europe) for having strokes. It also remains a fact that such a large number of the fatal and serious strokes are as a result of AF. We are definitely the poor man of Europe in that respect.

    One of the articles I read sometime ago also made some very valid points in that the two scoring systems are not truly comparable and in addition do not take account the risks and consequences (and actually the cost as well) of strokes not only for the individual but for their families and the NHS and social services. Due to advanced / advancing techniques more survive today than 20 years ago and many individuals are able to be rehabilitated to a much "higher" level than before. However has the total number declined significantly? I doubt it. The funding for these sorts of studies has to be done by the charities / government because it's of little interest to pharmaceutical companies. Also these sorts of studies are far more complex because of so many different factors and co-morbities.

    I agree that no one truly knows the long term 39, 40 or more) affects of not only NOACs but also many other medicines. Some side affects and issues only come to the fore when medicines are in public use (ie not just part of a trial) simply because of the wide differences people react to medicines and also in the real world people taking a particular medicine with other medicines and other co-morbities. Yes to control of studies and the release of medicines is vastly different to what existed 40 plus years ago but it isn't foolproof.

    A longer reply than I set out to write and hope it provokes some thoughts.

  • Thanks Peter, I am glad to see these points aired so admirably: I was concerned that our discussion was becoming a little one-sided. Unfortunately there always seem to be at least two sides to any question!

  • True.

    Well actually years ago one of the lecturer's said to us there are 4 sides to many things - even a line!! We think of a line drawn on a piece of paper as only being one sided item!!!

  • I also know two people who have had strokes. Both were already on anticoagulation. Anticoagulation does not "protect". It has statistical effect on health over time and across large populations, mainly benefitting people with multiple risk factors. But the "effects" also include harmful, sometimes lifelong side effects as well as benefits for stroke.

    We need to look at the evidence and make rational decisions because - I'm sorry - the pharmaceutical industry really does play a role in "marketing" benefits of anticoagulation. My cousin works in this industry and it's simply a fact of business. The market for anticoagulants is fast approaching $10 billion and anticoagulants are aggressively marketed. Their primary aim is to convince cardiologists and primary care physicians to prescribe these drugs to a far wider group of patients than is currently on anticoagulants.

    To be sure, once a daily pill is indicated, I'll be the very first in line! But we also need to have a balanced attitude: If we develop AF, our body is telling us something. The best thing we can do to reduce stroke risk is avoid the many known risk factors, and stay active and healthy. Taking a pill might make us "feel" secure, but stroke is a complex neurological event with multiple causes. We should feel most protected from stroke if we engage in regular exercise, eat well, avoid stress, keep blood pressure down, and stay trim.

  • I have only been taking Rivaroxaban since the end of June, and yes it worries me. I explained before, my Father died from a brain bleed, most likely from the warfarin he was on after several small strokes, but my grandmother had a major stroke, and spent the last 3 years of her life with no speech, in a wheelchair. Given the choice, I would rather have the brain bleed, and a quick exit! What does really bother me though, having read 'Doctoring Data' by Dr Malcolm Kendrick, is just how truthful the drug companies are with us. For example, who decided that (relatively cheap) aspirin is not as effective as (expensive) NOAC's? I have seen this statement made many times, but no data to back it up. A NICE recommendation is not enough, unless there is some real evidence!

  • Is the bleed rate less for Apixaban than for Rivaroxaban?

  • Interesting question. When prescribed this, my GP said that it was easier to take Rivaroxaban than Apixaban, as it was a once daily tablet. For me that seemed a good idea, as I struggle to eat meals at regular times due to work. Since you asked the question, I have been doing some research on the bleed rates. In 2013 it was stated that Apixaban did have the lower bleed rates, and I need to check if this is still thought to be the same - in 3 years many previously held theories can change dramatically! Something else to worry about!

  • No need to worry about - just think about!!!

    I was sure that it was but didn't have easy access to info via phone. Probably bleed rate is still the same but check each manufacturer's websites.

    To me your GP's comment about it being easier to take as only once a day is strange to say the least!!! That should not be the selection criteria for most people.

    Also Apixaban can be taken with or without food whereas Rivaroxaban is better taken with food?

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