Anti Coags - the risks

I have noticed on this forum that there is an over-riding feeling that if you are on anti-coags all will be well. There appears to be almost 100% support for being on them. Currently, I have a CHAD score of 0 and so my GP has understandably told me to 'hold back' for the time being. My GP's argument is based on the 'significant risk' of bleeds, especially on the brain. This hardly warrants a mention on here. So my question is, are the GPs over emphasising this risk? Is it a risk that should be considered at all? I am encouraged by what a lot of you are saying on here about the NOACCS and how they do not have an adverse effect on your lives, but on the other hand I'm concerned about what GPs are saying about the risks in taking them.

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  • Another document worth looking at is the new stroke one from AFA. On their front page. 

    I only saw it yesterday and a few other good new ones. A salutary lesson to look on there more often (I usually come to HUL via email link). 

  • I've just been reading reviews of a book on AFib that came out in 2012. I found the following paragraph interesting, and surprising, that was made in a review:

    Quotre: About the only criticism of "Beat Your A-fib" is that the author(s) do not sufficiently distinguish between "common" atrial fibrillation and lone atrial fibrillation. They really are two quite distinct entities with different causes, vastly different stroke risks (lone afibbers have no excess stroke risk attributable to the disorder as such), and significantly different long-term prognosis.

  • Hi Alan

    I know there are different definitions of lone AF, but there is two things they all seem to agree on. "lone AF" is a solo episode in a young person with no other underlying heart conditons and no repetition of the AF.

    None of the guidelines I am aware of would put such a person onto anti-coagulation treatement.

    The moment an AF episode happens in an older person (I agree defintions vary from 40 to 60) or repeat (they all seem to agree on this) Then they do not have lone Afib.

    Be well

    Ian

  • Then I have misunderstood the definition of 'lone'. I believed it meant there was no underlying heart condition and was not related to age or number of AF episodes.

  • I find that interesting but then again why should I?  Most GPs are risk averse where anticoagulants are concerned so will obviously try to transfer that feeling to patients. Britain has one of the worst records for having at risk patients on anticoagulants in Europe and we could stop 8000 strokes a year if this was changed. Strangely records show that most GPs are afraid of gastro intestinal bleeds rather than inter cranial . If one of their patient were to suffer such then they are 80% less likely to prescribe anticoagulants in the following six months yet a patient with a stroke has no affect on their behaviour. In fairness this data is about five years old now so some may have joined the 21st century since.

    I would not agree with the quote above either.  I strongly believe that if you stick to information provided by AF Association which is always vetted and approved by NHS then you won't go far wrong.

  • So I came off Pradaxa, officially yesterday. The Cardio last Friday suggested that I was more at risk from internal bleed, than stroke. My Chad score is zero. Correct decision or not? My GP is pleased, and he seconded the decision. I am pleased, because it is one less medication I have to take. They all agree that at 65, I will go back on it. I will be interested to find out if I feel any different in a months time....

  • I prefer to risk a bleed than a stroke personally. The new anticoagulants some have reversal agents now and if not only in system short while and medics able to deal with it until out of system. I wonder what the difference in risk is between now and 65!!! Read all about it and make informed decisions. I wonder why there is still reluctance to prescribe anticoagulants for AF 

  • It does beg the question what they will do when I get to 65. That will give me a score of 1 but the NICE guidelines apparently say 2 or over for anti-coag recommendation, and I seem to recall my GP saying the same thing.

  • i have been on anticoagulants since 2011 when i was 56 so dont understand i didnt have any other conditions apart from AF at that time

  • If you are female it counts as a score of 1 🙁

  • Same here, score of zero, no other problems, but been on anticoags since first diagnosed at 53. I have repeatedly questioned this with my EP who reassuresme I am better off on them than not. I said last time I was concerned about a brain bleed, so he changed me over to Apixaban.

    Koll

  • I'm thinking that's the one I'll opt for if given a choice. Any side effects you're experiencing? What were you on before he changed you?

  • No side effects, was on Warfarin.

  • ....and I had no issues with Warfarin either by the way. 

  • Hi Alan

    I think if you were as old as BobD (and that's pretty old) you could remember back to the formation of the AFA itself. In those days it was almost a single issue organisatiuon which campaigned for a) manual pulse checks as those ruddy machines miss so many sufferers of AF and b) anti-coagulation therapy to be prescribed for AF sufferers.

    And we need to remember that was only 2007, we have come a long way in the last 9 years.

    At the time it was formed, I think I am right in saying that the UK had the worst record of any Western European country for diagnosis of AF and for anti-coagulation in AF. And of course the result of that is that we were to some extent then the "stroke capital" of certainly Western Europe, (and yes I agree Russia is much worse than us and places like Albania, in fact stroke death and poverty go hand in hand )

    So now think about this, just ten years ago GPs were not either diagnosising AF sufficiently or prescribing anything like enough anti-coags.  I don't know how old your doctor is, but I'd be willing to bet he's been practising for a lot more than ten years. Some things are hard to let go of in terms of beliefs and training, and yes I am sure that seeing a patient with an intra-cranial bleed must really effect you as a doctor, especially knowing that your prescription had a part in that result.

    But likewise those who were not anti-coagulated and then either had the worst form of stroke did not exactly go back to their doctors and ask why anti-coags had not been prescribed did they?

    Of course there is a bleed risk.

    We have risk assessment tools such as CHADS and HASBLED to assess these risks.

    None of them are perfect, but then no drug is perfect, all of them have an "acceptable" level of risk or we do not allow them to be prescribed. And yes we even get that wrong sometimes (Thalidomide) Interestingly of course Thalidomide is still prescribed for it's original purpose which was never for morning sickness, and organisations that eventually become NICE and started the control of prescription drugs were born out of that dreadful scandal.

    So if I were you, firstly I would read a great deal about the subject, currently your CHADS score indicates no anti-coags needed, so it's unlikely. But as you read about CHADS you will discover that for example birthdays give you one point, its imperfect.

    But then life is imperfect we have to make decisions based on imperfect information, I wish you well in your decision.

    Be well

    Ian

  • I unfortunately had a brain bleed when on Warfarin so was immediately taken off it. I  have since had an ablation and for 16 months have been AF free.(fingers crossed that this state continues) but I suppose, according to many of you I am living 'on the edge'. I often wonder if any of the NOAC s would be safe for me. 

  • My EP changed me to Apixaban because I expressed concern abouta brain bleed. Whether he was righttodo so I know not, but he did. 

  • There are some who think that lone afibbers should not be on anti-coags. This is argued on the lone AF site, afibbers.org, particularly by the original owner, Hans Larsen. 

    However I think they're wrong. Stats indicate that lone AF does carry a higher risk of stroke than not having AF. As Lone afibbers tend to be very fit by definition (slim, fit, low alcohol, low bp, no diabetes, no family history and no other condition that could cause AF) they would naturally have a very low stroke risk without AF and having AF just increases that risk to around the same as the average unfit, overweight person.

    Having said that, with a CHASDS2VASC score of zero, the risk should be low until you're in your fifties. However I would recommend starting anti-coags at that point. The risk of a brain bleed is very much less nowadays on well controlled warfarin or NOACs.

  • Surely the scoring for CHASDS2VASC would be changed to score a 1 when you were in your fifties if the experts believe that was correct.

  • It all depends on your own bleeding risk. If you carefully monitor your INR then the risk is less than taking aspirin and a fraction of the average person who is only in range 65% or less of the time. And it's the average person who makes up the stats. The stats also do not include many TIAs where the symptoms are often ignored.

  • The following site will show you your risk of stroke and Major Bleeding depending on what Therapy you are on.

    sparctool.com/

  • Thanks for that. What is interesting, is the lowering of risk for a stroke taking an anit-coag if on a CHAD2 score of 0, is more than offset by the chance of a bleed. All a bit of a juggling act.

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