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ESC: Anti-coagulation merely "to be considered" with CHA2DS2-VASc score of 1 in men or 2 in women

PlanetaryKim profile image
93 Replies

I am happy to see that the ESC (European Society of Cardiology), in its updated 2020 Guidelines for the treatment of AF, is continuing with its previous guideline that oral anti-coagulation is simply "to be considered in patients with a CHA2DS2-VASc score of 1 in men or 2 in women, with treatment individualized based on net clinical benefit and patient values/preferences."

The ESC does not actually "recommend" anti-coagulation until patients climb one notch higher on the CHA2DS2-VASc scale, giving the patient at least one cardiovascular comorbidity.

The ESC 2020 guideline is Item 4 in this document summarizing the key points of the new guidelines: acc.org/latest-in-cardiolog...

This is significant and validating for those of us who are CHA2DS2-VASc 1 in men or 2 in women, and who are choosing not to take OAC (or in my case, not take any drugs at all).

In Canada & US, the guidelines recommend anti-coagulation at the lower CHA2DS2-VASc score of 1 in men or 2 in women, And cardiologists in Canada & US tell us with much hysteria that we could stroke out at any moment if we don't take these drugs. Yet their European colleagues do not agree.

(CHA2DS2-VASc 1 in men or 2 in women essentially means you are male and 65+ or female and 65+ but have no actual cardiovascular comorbidities.)

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PlanetaryKim
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BobD profile image
BobDVolunteer

Obviously it is up to individuals but many of us feel AF should = anticoagulation regardless.

PlanetaryKim profile image
PlanetaryKim in reply to BobD

Yes, for sure. I think what I appreciate here with the ESC guidelines is the recognition of individual/patient preference, which is very much lacking in the Canada/US situation of cardiologist conversations with their AF patients. I don't know what the UK situation is. Do UK cardiologists follow the ESC guidelines?

Spangle14 profile image
Spangle14 in reply to PlanetaryKim

No, we are the same as in the US and Canada, Kim

Spangle14 profile image
Spangle14 in reply to PlanetaryKim

The same guidelines as the US and Canada are applied here in the UK, Kim

rosyG profile image
rosyG

Having seen severe strokes in hospital I think one should ‘ consider’ most carefully !!!

Chrissy7 profile image
Chrissy7

So good to see this Kim!My family doctor has been arguing that I should be on a blood thinner… But my cardiologist says I have absolutely no reason to have a stroke. I take daily aspirin but I don’t have any heart disease high blood pressure etc.

Apparently not all patients with AF mean anticoagulants

PlanetaryKim profile image
PlanetaryKim in reply to Chrissy7

Sounds like you have a good cardiologist, Brendie!

BobD profile image
BobDVolunteer in reply to Chrissy7

Under NICE guidelines aspirin has no place in stroke prevention where AF is concerned. Fine if you have stents or artifical valves but not for AF as the risk /reward equation heavily falls on risk.

Chrissy7 profile image
Chrissy7 in reply to BobD

I read somewhere that Aspirin do help .. but only by 20 percent

PlanetaryKim profile image
PlanetaryKim in reply to Chrissy7

My cardiologist said aspirin "50%" as effective as prescription OAC. He is not recommending aspirin, but made that comment when I told him I take aspirin when having episode.

CDreamer profile image
CDreamer in reply to Chrissy7

Aspirin is an anti-platelet and not an anticoagulant. Different beasts entirely. Aspirin is not advised for AF patients as taken daily there is an increased risk of ulcers and bleeds and believed to do more harm than good.

in reply to Chrissy7

Studies have shown that aspirin is of very limited benefit in stroke prevention for those with AF, unfortunately. I was told this quite categorically by an EP.

I’m not clear why your EP and doctor disagree on your risk. Your CHADSVASC score indicates whether anticoagulation is advisable or not.

cuore profile image
cuore in reply to

One is a GP and one is an EP, and therein lies the difference. So many GPs are incorrectly treating AF patients rather than sending them to an EP for proper treatment. It happened to me, and it cost me three ablations rather than one.

etheral profile image
etheral

The risk of having a stroke is 5X higher with those with Afib. Use your own judgement.

PlanetaryKim profile image
PlanetaryKim in reply to etheral

If the cardiologists of Europe agreed with that statistic for all afibbers (which they don't), then their guidelines would recommend everyone with AF take OAC.

CDreamer profile image
CDreamer in reply to PlanetaryKim

And many, many do - I would say that although some general cardiologists may take that view that it is not necessary, the EPs who are the specialists cardiologists would tend toward advising ACs.

There is always dissent and difference and opinion between experts and bias based upon personal experience, which is why that on a personal level it makes it such a difficult decision to make for a newly diagnosed with AF person who is very scared, when they hear and read conflicting viewpoints and are in a such a vulnerable place.

It is a personal decision and viewpoints change as new evidence emerges, for me, in this time and place - it’s the best we got and I’m taking them.

wilsond profile image
wilsond in reply to PlanetaryKim

Cardiologists are not the experts on arrthymias.EPs are and the consensûs generally is that they advise ACs for any one over Chad 2+

PlanetaryKim profile image
PlanetaryKim in reply to wilsond

Yes, exactly - anyone over CHADSVASC 2. Many of us are not over that.

wilsond profile image
wilsond in reply to PlanetaryKim

I was ' only ' a 2 when I had my mini stroke

Chrissy7 profile image
Chrissy7 in reply to wilsond

Is it too much to ask what made you a 2?Seems like it would make a huge difference.

People with underlying heart disease for example at 2 I would think should have an AC even at 2.

My daughter is an intern -going to be a surgeon but I really just guessing as I have no training in the field of Heath

Chrissy7 profile image
Chrissy7 in reply to wilsond

What is an EP?

wilsond profile image
wilsond in reply to Chrissy7

HelloEP is an Electrophysiologist

They are cardiologists who have trained to specialise in Arrthymias . They are highly trained and obviously more knowledgeable than cardiologists. Bobd on here said Cardiologists are the plumbers ,EP are the electrician and GPs are the caretakers ! X

Chrissy7 profile image
Chrissy7 in reply to wilsond

thanks...I just heard them called a rhythm specialist ...it takes forever to get to see an EP here...

Auriculaire profile image
Auriculaire in reply to PlanetaryKim

These guidelines have been in place since 2018. However they are not rigidly adhered to and individual cardiologists will still prefer to anticogulate at younger ages. My own cardiologist (I live in France) said I did not need them with a score of 2 for female 65+ . Then I had a TIA despite taking nattokinase. Score up to 3 so straight on to Apixaban. With my first attack of afib the hospital cardiologist put me on a vit K antagonist despite my score only being 1! I was taken off it 3 months later by my own cardiologist .

CDreamer profile image
CDreamer

Interesting - until recently it was the US still using aspirin and UK who were advocating for ACs.

I fought against taking them until I had a TIA a few years ago. Now with COVID around I think the case for taking them is even stronger.

Even amongst the cardiologists and researchers there is discussion and diverse opinion but I think the statistics speak for themselves. Dr Matthew Fay, a GP in the UK, did a lot of research in the UK in the general population ie: his practice who advocated for A/Cs and another local GP practice who didn’t. The stroke rate difference between them was startling and certainly convinced me, who was quite against ACs back in 2014.

We don’t live in a perfect world and statistics are just numbers, which is why the CHADSVASC score isn’t perfect but it’s the best we got.

At the end of the day it’s fear which is the decider - some doctors are more scared of bleeds, especially in the elderly, whilst others more scared of strokes. I don’t think any of us can be ‘objective’ as we will be influenced by either our bias or our fear.

PlanetaryKim profile image
PlanetaryKim in reply to CDreamer

All very true!

saulger profile image
saulger in reply to CDreamer

Dr Matthew Fay's article:

guidelinesinpractice.co.uk/...

secondtry profile image
secondtry

Thanks for posting Kim. My cardiologist is the area anti-coagulants specialist so he felt professionally obliged to recommend I start taking them at 66yo, Lone PAF fully stabilised with Flecainide & CHADS 1. However, his follow-up letter to my GP was not insistent and he gave me PIP instead, which I have not taken as have had no AF.

I think it is important that there are posts here giving the alternative viewpoint as a one sided debate is never productive - so keep up the good work.

Personally, having discussed it with the family, I am very comfortable with my decision to postpone taking ACs. All the while I am active, healthy and with no other significant comorbidities, I regard my individual increased risk of a stroke as acceptable.

PS I also think I will be taking them in the future!

in reply to secondtry

Sounds great in theory but the thing to remember is there are absolutely no warnings. If it happens, it happens and your life will never be the same again. In other words, there is no second try!

secondtry profile image
secondtry in reply to

Absolutely right Flapjack, in my case the decision remains under review and is largely subjective. I know the risks seeing my wife have a stroke last year.

Weighing everything up that I know, all I can say' in my defence' is that I think a combination of the medics acting on that they will never be sued for prescribing ACs too soon and Big Pharma's shareholders patting them on the back, many similar to me are starting the pills 5 years too early. What's 5 years, well I dare say in that time there will be more revelations on DOACs and in the AF arena generally - small improvements can effect large QOL gains.

in reply to secondtry

I wish you well.....

in reply to

Just re read your reply. Is the PiP an anticoagulant?

Chrissy7 profile image
Chrissy7 in reply to

I think it means a pill in pocket like an anti arrhythmic drug that you can take if you have an AFib episode

Peony4575 profile image
Peony4575 in reply to

The same is true of an AC bleed Flapjack. It is not your responsibility to get us all to accept your point of view. There is always more than one point of view and you are not the only well informed intelligent adult either . Also with the advent of clot busting drugs full recovery from strokes is now a possibility and I know people who have benefitted, one of them twice. AF induced strokes are not somehow resistant to treatment as is sometimes implied .. No one wants a stroke or any other of the myriad nasty diseases or events that are out there but it’s not a clear cut choice of AC means safety without risk which is the dominant theme on threads such as this

in reply to Peony4575

I don’t disagree with you Peony, I am also well aware of the increased risk of an Intracranial bleed. I am not medically trained and whether anyone wants to accept my view or not is of course, entirely up to them. At a recent support group meeting we were fortunate enough to have a speaker who is responsible for training GP’s in anticoagulation. She made it clear that it is not a precise science but that unless there was clear evidence that someone may be at risk of having a spontaneous bleed, the risk of stroke was significantly higher. Yes, stroke recovery thank god, has significantly improved but it is dependent on a speedy response which unfortunately, is not always possible.

Ps. No one has ever called me intelligent before 😳

Peony4575 profile image
Peony4575 in reply to

I don’t think anyone would disagree that someone having fairly frequent episodes of AF would be well advised to take AC . I would myself. With someone who has one or two episodes a year and maybe has the chance to take ACs as a PIP the outcomes are as good and the risk from the AC lowered ( papers to support this given on previous threads). And there you go again giving one side of the story . Stroke recovery has improved and most hospitals or areas have centres set up to deliver it, but you don’t balance your statement by saying treatment of bleeds hasn’t made the same progress and are even more dependent on a speedy response . Try baking your flapjack on both sides

in reply to Peony4575

I’m not familiar with taking an AC as a PiP, seems a bit risky when AF can kick whilst you are asleep. As for half baked FlapJacks, I was only responding to your comment on stroke treatment.....shall we call it a tie....😉

Peony4575 profile image
Peony4575 in reply to

We can agree to differ . The treatment for brain bleed if you are on ACs involves blood transfusions to wash the AC out of your system and the only way to stop a bleed that doesn’t stop itself is brain surgery . Just saying .ACs are not a risk free option

in reply to Peony4575

We are agreed on that!

etheral profile image
etheral in reply to Peony4575

The risks of an intracranial bleed after given TPA or other clot busting drug are far higher than the risks of AC. Plus there is a very limited time period after the embolic stroke when this is likely to be effective ( about 3 hrs)

CDreamer profile image
CDreamer

Thanks to Andy for posting a link from the StopAFib site - I just read this para from the European Soc Journal which expands a little on the thinking of adding being Female to the CHADS risk assessment

Female sex is a stroke risk modifier that increases the risk of AF-associated stroke in the presence of other stroke risk factors.353 Women with AF have a greater stroke severity and permanent disability than men with AF.1427 Anticoagulation with warfarin may be less well controlled in women, and they have a greater residual stroke risk even with well-controlled VKAs.1428 The efficacy and safety of NOACs in landmark RCTs were consistent in both sexes, but women were largely under-represented.423

Much more on how women with AFib are treated differently on this:-

academic.oup.com/eurheartj/...

What also caught my eye was the advice that Doctor’s should listen to patient experience and it seems to me that is what is often lacking so if you want to say no to a med or a treatment, you should not be made to feel you are wrong.

saulger profile image
saulger in reply to CDreamer

I believe that any medical decision should be based on the medical evidence (science) and not based on an uninformed gut-feeling.

CDreamer profile image
CDreamer in reply to saulger

How was that not? Where did ‘gut feeling come inform? I’m quoting from the European Cardiology Soc Journal & advice for doctors.

CHADS is a very blunt assessment tool and what we are all saying is exactly that - ie: the evidence is lacking.

The point is that most research of heart health has been done on men and women present & experience very differently & the call was for more attention to be paid to female experience & more research to include female participants. You won’t have medical evidence until you include female participants.

saulger profile image
saulger in reply to CDreamer

CDreamer. My comment was in support of your research and intended for PlanetaryKim.

CDreamer profile image
CDreamer in reply to saulger

That’s OK but your reply was addressed to me. Best wishes.

saulger profile image
saulger in reply to CDreamer

I can still support your comment and intend my remark for PlanetaryKim, to avoid riling her directly.

CDreamer profile image
CDreamer in reply to saulger

Fair enough.

I am wondering whether the ESC recommendation differs because they are making a different value judgement. If you ask a doctor why you should take an anticoagulant, they will generally reply that it’s because the stroke risk outweighs the risk of a significant bleed. But there are other factors involved- the patient’s level of psychological comfort taking an anticoagulant, the fact that the risk from an anticoagulant may be more immediate and so on. So there isn’t any objective way to measure the two risks from the patients point of view. Maybe ESC are just attaching more weight to factors like these.

Nerja2012 profile image
Nerja2012 in reply to

I totally agree with what your saying about the psychological aspect of taking A Cs. I started taking Apixiban 1 month ago and it terrifies me as does a stroke if I dont . I episode in 15 months makes the desicion even harder. Having 1 parent dying at 68 from a bleed on the brain (A Cs ) and the other at 98 with A F ( no A Cs ) died of natural causes despite A F.

Peony4575 profile image
Peony4575 in reply to Nerja2012

Sorry about your parent dying of a bleed on the brain while anticoagulated . It is also a point well made, whilst the risks of a stroke from AF if not anti coagulated are well known , and repeated endlessly on the forum the impression is given that ACs are risk free and they most definitely are not

Nerja2012 profile image
Nerja2012 in reply to Peony4575

Thanks for the reply Peony. It's not an easy decision, if I was under 60 I would have Lone AF but as I'm not I have P A F, Doc said patients like me are in a very grey area BUT I have just taken my Dose of Apixiban and the Anxiety continues, if Anticoags frighten you they frighten you, hence your comment about the Psychological affect and that in itself can be bad for your health.

Peony4575 profile image
Peony4575 in reply to Nerja2012

Of course you are going to be frightened especially after what happened to your parent . And it is an intelligent response to be frightened anti coagulants are not risk free smarties . But if you get AF with any degree of frequency a person is between a rock and a hard place and I would take ACs albeit reluctantly in that situation . I feel for you

Nerja2012 profile image
Nerja2012 in reply to Peony4575

Thank you so much for the reply and your understanding,

rosyG profile image
rosyG

I was part of the stroke group for Surrey a few years ago and when the discussion was about AF related strokes being more severe than some other strokes a consultant from a Surrey hospital confirmed that of the nine recent deaths from stroke they had had all were caused by AF. I don’t normally wish to add to peoples anxiety but these are avoidable deaths if we take anticoagulants so I think those who are suggesting it’s something where more evidence is required should try snd look at real life situations like the aforementioned.

wilsond profile image
wilsond

I was Chad 2. not anti coagulated,then had the scariest time of my life when I had a mini stroke.Promptly ACd which I had been asking for two years after diagnosis

My mother died in my arms of a huge AF stroke..not anticoagulated despite at least a two and 77.

My grandmother died of an AF stroke ..also not on ACs

I think the opinion of EPs is pretty much a consensus wherever in the world they practice ,that patients with AF etc should be anticoagulated after 2 ,not dismissing cardiologists thoughts but they are NOT the experts in Arrthymias.

Individual choice of course but my mind is clear,NOAC, some meds,very focussed on nutrition and hydration and lifestyle . All in a package !

Also thanks to Andy for posting the link to the whole report very interesting .

cuore profile image
cuore in reply to wilsond

Thank you for adding your genetic background with both your mother and grandmother dying of stroke. It would seem that you inherited their genes, substantiated by the fact that you did have a TIA at a 2 and not on anti-coagulants. It seems that genetics, as being a major factor, were not initially considered in your initial treatment.

Now take another patient who is a 2 and whose parents and grandparents have not had a stroke. Should that patient at a 2 urgently be placed on anti-coagulants?

The question is asked just for thought and consideration because I believe the genetic component in the study of AF is still in its infancy.

I do not know if there have been clinical trials narrowing the parameters of 2 + no stroke genetics versus 2 + stroke genetics . But without clinical evidence , at a 2, I personally would lean to be coagulated with a strong genetic background; without the genetics, I would have to consider my lifestyle whether to choose anti-coagulants.

In my case, I am a 4, so discussion over.

wilsond profile image
wilsond in reply to cuore

Yes indeed it's interesting that despite both mum and grandma being patients at the same GP as myself ,that it didn't get considered!I agree ,personal choice especially at low CHadsvac score .

cuore profile image
cuore in reply to wilsond

I think that once one is diagnosed with AF, the question then becomes, "How good is your GP?" Mine was poor because he led me to the persistent stage upon which I asked, "What about rhythm control drugs?" He answered he wasn't licensed to prescribe them. He didn't have a clue how to treat an AF patient. When he placed me on Metoprolol whereupon I had extreme reaction making the condition worse, his comment was, "You are not the only one."

In terms of your GP, I would choose a harsher description than "interesting."

The conclusion, for me, was not to let my health be totally in the hands of my GP but to educate myself as much as possible now that we are so lucky to have the internet for the information at out fingertips.

Crystalbowl profile image
Crystalbowl

I resisted all meds for several years after being diagnosed with PAF, especially anticoagulants as I thought I bled and bruised too easily as it was. I had been having acupuncture for some time and the acupuncturist agreed saying I bled more than most patients when she took the needles out. However, I was hospitalised a few times and on a couple of those occasions I ended up first on a beta blocker and then on a whole regime of meds including Rivaroxaban for my heart. I am now in heart failure, the AF is persistent and I also have a CRT-p implanted. The joke is, I did a Covid antibody test last week, which is a pin prick test where you have to allow drops of blood to fall onto spots on a card, and I could barely get any blood out of my finger so I think my test will be pretty useless. Haven’t had any result yet. I have not had C19 thankfully. I was doing the antibody test for a research project I am a participant on. I am female aged 74. Have also had my first Covid jab, O/AZ, and did not bleed at all after that.

Chrissy7 profile image
Chrissy7

Wow... this is a lot of information!1. Yes I am concerned about not being on an AC but trust my cardiologist; I still jog everyday and my AF is well controlled at the moment with Diltiazem - I have not had a heart rate spike since I started taking it 2 months ago

2. I don’t know if they took a

CHADSVASC score; don’t even know what this is but I’m otherwise healthy- according to my blood tests ... etc and I think he way saying that I would have to have some other condition besides AF in order to be at risk for stroke?

3. All of this concerns me enough that I have made an appointment with my general MD on Monday who was concerned about me not being on a blood thinner...he told me at Christmas he was going to speak with my cardiologist.. so I’m wondering if he did

4. A cardiologist may not be the experts on AC however, there is only one HR specialist in this city and it takes forever to get to see him

Thank you all for your input.

I felt good about the contracts of the original article Kim posted however now I’m quite confused ...

Buffafly profile image
Buffafly in reply to Chrissy7

Hi Brendie, as you are 56 you wouldn’t normally be in the 2 category.

cuore profile image
cuore in reply to Chrissy7

Sorry Brendie, I could not help but laugh at your "confused." 😺With bombardment of information and different points of view, that is so easy. I would suggest you learn , by googling, how to calculate a CHADVASC score and what the letters stand for. Then, "the bell" should go off.

Jajarunner profile image
Jajarunner

This is great news for those of us who cannot tolerate anticoagulants for whatever reason. Its very frightening to know you cannot stay on them for long, yet read all the scary stories on here about what may happen if you come off of them. Its nice to read the other side of the equation. Thank you for sharing it

Whilst most of us seem to shun the idea of playing Russian Roulette and follow the medical advice we are given, it is surprising that others decide a different route because they believe the main thrust for anticoagulants was dreamt up by large Pharmaceutical companies and others whose only interest is to line their shareholders pockets. This seems even more surprising when they then go on to say a close family member has recently suffered a stroke. However, the real worry is that this thread has identified that there are still some AF patients taking aspirin apparently under guidance from their medics. Also, we hear from another member who initially was supportive of the points made by PK but now admits to being totally confused but probably and now sees anticoagulants in a different light. However, if I read it right, the icing on the cake was when someone who was against all medication, especially anticoagulants because they bled and bruised so easily, only to find that now she is taking a DOAC, it’s almost impossible for her to give blood and great credit for making the point that the problem she was worried about just wasn’t there.

Of course everyone must have the right take or refuse medication but where starts to get dodgy is when they try to influence others to follow their example or accept their thinking. We are told that stroke is the highest risk associated with AF and that it must never be underestimated. I’m fully aware that my comments are likely to annoy some but to be honest, I don’t care. If this prevents just one person from having to face the consequences of making a very big mistake then I will be happy.

PlanetaryKim profile image
PlanetaryKim in reply to

There's really no need to attempt to discredit me or any other member here. All of my posts are reasonable and share legitimate news or medical information, sourced with proper links.

You say I "admit" to being barred from another group here.. as though there should be some shame involved in that. When obviously I put that information on my profile here so people would know - mainly the many hundreds of friends I had made in the group I was barred from.

And by the way, I was barred from the CLLSA forum because I objected, after 3 years of silence on the topic, to the endless religious proselytizing on that group... the fact that members from all over the world and many different faith backgrounds, were constantly having Jesus rammed down their throats but were too afraid of losing access to the group to protest. So I spoke for all them, and lost access to the forum because of it.

I really think you need to rethink your words in which you attempt to discredit me, or any member here for that matter. That is not what a patient support forum is ever supposed to be about.

I have also not said that OACs are being pushed to line Big Pharma's pocket. So do not attribute that view to me. Please try to behave better and with more integrity on this forum.

EDIT: Flapjack deleted the portions of his comment that deliberately tried to discredit me, in response to this comment of mine.

in reply to PlanetaryKim

Thank you for explaining your point of view so coherently and standing up for those of us who may feel intimidated by the small minority of inappropriate posts on this forum. Your position on this vexed question of anticoagulants (ACs) and AF appears to be in line with the NICE and ESC guidelines, so I’m puzzled why you are being criticised.

When I asked to start anticoagulants for AFib, it was not based on any guidelines. I was afraid I might have an ischaemic stroke. Fear, not an evidence based decision.

Having said that, I still don’t understand whether the risks of bleeding used in the trials on which the guidelines are based, relate to all bleeds and in what proportion.

I imagine that cerebral haemorrhage remains much harder to treat than say bleeding from the gastrointestinal tract. And then there is the question of micro bleeds in to the brain, which may contribute to dementia.

In my family, one had AFib, no ACs and died following a stroke in his mid 80s. The other had AFib, was given ACs and died in her mid 90s but did not have a stroke.

I don’t regret my decision to start ACs, but don’t feel able to advise anyone else to take them against guidelines.

saulger profile image
saulger in reply to

I prefer the story of your relative with AF who was taking ACs and passed away, aged mid 90s, not due to a stroke, than your relative with AF who was not an ACs and died of a stroke age mid 80s. Point made, I believe.

cuore profile image
cuore in reply to

Your genetic background is most interesting. However, for me, it needs some clarification to correctly interpret. Were your relatives on the same line, e.g. maternal or paternal, or was one from the maternal link and the other from the paternal one?

If they were on the same line, I could conclude, with some safety, that ACs made a difference. If they were not on the same line, then the genetic background of both should be further examined with the probability of the one in the 80's stroke prone, and the one in the 90s could or could not have stroke prone genetics. So, if stroke prone, the one in the 90s got protection with ACs, if not stroke prone, the ACs would be complimentary.

I am not a medic, but I am most curious as to how much our genes play a role in AF and stroke. I have a genetic background for AF, but I am not sure about stroke.

in reply to cuore

They were both on the maternal line. No strokes on the paternal line, but two heart attacks.

This might interest you if you haven’t seen it. I got lost at “candidate gene”

ahajournals.org/doi/full/10...

cuore profile image
cuore in reply to

Your reference (2012) is too complex for me to understand. However, I did search for chromosome 4q25 which was not mentioned, but the PITX2 gene associated with atrial fibrillation was. The bottom line is that I would rather blame my genetics for AF rather than my lifestyle. It is a cop-out preference.

Kim, I did not say that the references to Big Pharma were made by you what I said was that your post was responsible for encouraging others to talk about issues like that which were likely to encourage others to perhaps not take anticoagulants if recommended. I have worked with stroke victims whose lives have been changed forever and unlike most of us, almost all of them were unaware they were at risk. I have seen the effect it has on both the patient and the members of their family. Everyone has the right to do what they want regarding medication, but to me, it seems inconceivable that anyone who knows they are at risk, that they would not want to do everything they possibly could to prevent that tragedy from happening to them.

I also agree that people should be free to express their views on the forum but I will always be vocal about this subject however I apologise if I have offended you, but protecting AF patients from the risk of stroke is such a crucial issue.

Hopefully it’s not too late, but I have deleted the comments you have referred to.

CDreamer profile image
CDreamer in reply to

Trouble is the more you push FJ, the bigger the push back.

It’s a really difficult decision for anyone to make, not made easier when there is a lack of support for exploring both sides of an argument.

I’m not in the least surprised that people feel badgered & confused because this subject is not communicated or explained well by most doctors - not always their fault - but an area that needs vast improvement. And a task not made easier when there is difference & dissent and, I am really sorry to say, ignorance & reluctance to actually read the science papers & keep up to date by some.

You need a really good, informed reason to take a prophylactic medication which may carry more risk than benefit for many people. Until we’ve progressed to personalized medicine - not too distant now - we will have to accept there is risk doing and not doing. Depends which you are more fearful of that is the deciding factor.

in reply to CDreamer

Totally agree CD, sometimes I need to get back in my box, but for a variety of reasons this is something I feel passionate about.......

Chrissy7 profile image
Chrissy7 in reply to

Again Kim’s article is made from professional sources .. it’s not just someone spewing off their personal opinion. And I am NOT refusing to take ACs ... in fact I questioned my cardiologist last time I saw him as to why I am not on an AC... he said “why would YOU have a stroke?”

I can’t think of any reason other than AF (now controlled by medication)

I understand AC have a lot of side effects and that you have to be careful of what you eat and drink when taking them..,

I had a brain tumour removed in 2015 - luckily it was benign … Most people would think that I would have to be on an anti-seizure drug after having a brain tumour however I don’t take an anti-seizure drug. The tumour was removed and I don’t have Any reason to have a seizure. Perhaps this is a poor example but U get the point. I’m not opposed to medication but after all I’ve been through want the best quality of life possible and the freedom to eat and drink What I want.

Most people would say that is stupid that I still drink alcohol in moderation but it doesn’t make me feel bad and it doesn’t interfere with Diltiazem- I enjoy life and want the best quality of normal life possible.

I will speak to my family physician again on Monday about this and ask him to talk with my cardiologist to figure out why he seems to think I don’t need one.

I have had several aunts and uncles died from a stroke and I understand the devastation.

However I have to trust my doctors... it’s all I have.

I did have a friend who bled out all in the heart operation he was on Blood thinners .. he was only 54. They couldn’t get the bleeding from his heart to stop.

So many situations and each of us are so unique and so different.

I want to find out what my Chad score is however.

My doctors explain very little; I have never even heard of it before....

in reply to Chrissy7

I do understand Brendie and the fact that nearly everyone on the forum tend to only reiterate what they have heard from a variety of different sources. It certainly doesn’t help when GP’s disagree and when there is conflicting views expressed by cardiologists. It’s a minefield but the only thing we can say with a reasonable degree of certainty is that if you score 2 or more on the CHADS score you really should take an anticoagulant. If it’s 1, then you should consider taking it based on the advice of your EP or Doctor. As has been said SO many times, bleed risk from Warfarin (in range) is extremely low and even marginally lower for all DOAC’s unless there is a history of bleeds within your close family. Not sure what else I can say......

Chrissy7 profile image
Chrissy7 in reply to

Good information Really I know that if I insist on a prescription for An AC either doctor will write me a script however I don’t respond well to medication - not like most people and side effects are really bad with me ...so I’m hesitant to take it if I’m fact I really don’t need it.

I will ask about my Chad score...

Buffafly profile image
Buffafly in reply to Chrissy7

I just picked up the comment about diet - you only need to be careful if taking warfarin, but the latest anti coal ants (😂 my predictive text, another reason to use ‘blood thinners’) don’t have any diet restrictions. Seldom have side effects either. But as said previously you shouldn’t need them yet.

Chrissy7 profile image
Chrissy7 in reply to Buffafly

That’s great... thank youMy aunt died of a stroke.., she was on warfarin at the time ...

Buffafly profile image
Buffafly in reply to Chrissy7

The trouble with warfarin is you have to be ‘in range’, too high and you are in danger from bleeding, too low and you’re in danger of stroke.

cuore profile image
cuore in reply to Chrissy7

Hi Brendie, I feel I should respond to your post again. There are many sites that show you how to calculate your score. Here is one that compares the two:emedicinehealth.com/what_do...

I suggest, when you have your discussion with your cardiologist, you have ready the age and the lineage (maternal or paternal) of you aunts and uncles who died from stroke . Your friend on AC died in surgery of bleeding so he can be excluded to show to your cardiologist because he was a friend and not genetically related. So, if both lineages are stroke prone there is a heightened genetic factor of the probability of inheriting than if only one lineage is stroke prone. Just trying to help.

CDreamer profile image
CDreamer

For those who haven’t decided and would like more explanation on anticoagulants and anti-platelets and how they work - patient information sheet link below which itself has various links & I think one to the CHADSVASC scoring system which should be balanced against HASBLED score & discussed with your doctors.

heartrhythmalliance.org/res...

saulger profile image
saulger

Badger21 had two relatives with AF. One took AC and died mid 90's OF OTHER CAUSES and the other, without AC died aged mid 80's OF A STROKE (10 years younger).

One will never know if the second death might have been prevented with AC, but a good many strokes are prevented with AC.

This tiny sample, however, correlates well with an earlier comment that a doctor reported that 90% of recent deaths FROM A STROKE were of AF patients.

AF increases the risk of a stroke (the data is there), and the medical advice is that ACs are likely to spare AF patients from a stroke (with statistics).

What PlanetaryKim believes and does, is her business, but I say: follow the science !

Chrissy7 profile image
Chrissy7 in reply to saulger

Science says my CHAD score is 1 (I just found that out)... and due to that-I probably don’t need a blood thinner

saulger profile image
saulger in reply to Chrissy7

Hello Brendie. Bravo.

Any other health issues in addition to AF? Other heart issues, diabetes, high blood pressure, obesity, sedentary lifestyle, sleep apnea, smoking, alcohol, peripheral artery disease ?

Chrissy7 profile image
Chrissy7 in reply to saulger

Nothing ...

PlanetaryKim profile image
PlanetaryKim in reply to saulger

The science is what I was quoting/citing in my original post here, saulger. My own personal views on anticoagulation are completely irrelevant to anything. I am citing the latest OFFICIAL POSITION of the 100,000 health care professionals within the European Society of Cardiology. This is THEIR opinion. It is dishonest of you to trivialize it as though it is just my personal belief. You are welcome to hold a different belief than the 100,000 health care professionals in the European Society of Cardiology who are telling their patients that anti-coagulation only needs to be considered, not required, at CHADSVASC 1 in men and 2 in women. But please be honest here about who you are differing from. Don't pretend it is just my view.

saulger profile image
saulger in reply to PlanetaryKim

I find your views to be on the extreme side (no offence meant).I suffer from paroxysmal AF, resting heart rate 56, BP 110/70, BMI 23, exercise almost every day, not on any medication, and York cardiologist Dr Sanjay Gupta, who is the darling of this forum, advised me to start AC owing to my age (74) and the general risk for AF sufferers, which is 5 times that of the non-AF populace.

Many AF sufferers are not as lucky as myself, healthwise, and some are in even better shape and the generic rule of thumb is not appropriate.

I think that I will stick with Dr Gupta, and extreme views reinforce the need to follow the science and not to heed hearsay.

PlanetaryKim profile image
PlanetaryKim in reply to saulger

Why are you saying that the views of the 100,000 health care professionals in the European Society of Cardiology are "extreme views" or "hearsay"? These are their published guidelines. My personal views are not relevant. Why are you calling these 100,000 doctors in the ESC "extreme"?

saulger profile image
saulger in reply to PlanetaryKim

You should read the article, that you yourself posted, more carefully (point 4.):

"...Oral anticoagulation (OAC) is recommended for stroke prevention in AF patients with CHA2DS2-VASc score ≥2 in men or ≥3 in women,

*************

and it should be considered in patients with a CHA2DS2-VASc score of 1 in men or 2 in women, with treatment individualized based on net clinical benefit and patient values/preferences."

*************

The article also states (point 3.):

"All patients diagnosed with AF should undergo a “structured characterization,” which includes stroke risk, symptom severity, AF burden, and AF substrate assessment. Patient values should be considered, and an assessment of “patient-reported outcome” measures is recommended. "

Until all health co-morbidities and lifestyle habits and severities are taken into account, no general rule of thumb should be the basis of a life and death choice.

PlanetaryKim profile image
PlanetaryKim in reply to saulger

I acknowledged all of that and do not dispute any of it. You seem confused. Nothing you have posted there is at odds with my original posting.

Peony4575 profile image
Peony4575 in reply to saulger

The risk of stroke for men your age is about 1386 per 100,000 and presumably x 5 if you have AF so say 6930 per 100,000 which means 93,070 won’t have strokes to put the risk in perspective ( realise that’s no consolation if you are one of the unfortunates who has the stroke and doesn’t get clot busted. I think it is extremely arrogant to claim the science is all in one side and all rule of thumb and personal opinion on the other . Maths is black and white, medicine is not because every individual is different , their disease burden, responses to drugs etc . I think you will find in the future doctors move away from the carpet bombing approach to ACs in AF which is why studies are being done in PIP approach to ACs which have so far found the outcomes to be as good . Bully for you if you want to take ACs I am completely respectful of your approach I wish I could say the reverse was true and the same respect was shown to people who want to be a bit more cautious

saulger profile image
saulger in reply to Peony4575

Thank you for that. According to your figures, my chances of suffering a stroke are 1 in 14 (no references cited). Pretty horrific.

My issue is not whether folks decide to take AC or not. It is whether this decision is made based on medical investigations taking all contributing co-morbidities and lifestyle habits into account, and not on the basis of a post that fails to mention other relevant points in the same article.

Regarding the statistics for age-related strokes in AF patients, the science literature says this:

uscjournal.com/articles/ide...

1 out of 50 patients with 'lone AF' in the 70-79 age group will (statistically) suffer a stroke (see below), which increases to 1 in 33 for AF patients in the 80+ group.

These are depressing statistics and merit AC consideration.

"Increasing age is a strong independent risk factor for stroke in AF patients.5–8 In an analysis of patients with ‘lone AF’ (i.e. no other risk factors, including no previous stroke, transient ischemic attack, hypertension, congestive heart failure, diabetes, angina, or MI), the annual rate of stroke was 0 % in patients aged <60 years, 1.6 % in patients aged 60–69, 2.1 % in patients aged 70–79, and 3 % in patients aged >80 years.5 In a systematic review of 18 studies that examined risk factors for stroke in AF patients, eight of 13 studies that considered age found increasing age to be a significant risk factor for stroke.9 In a pooled analysis of trials examining independent risk factors for stroke, older age was a consistent independent risk factor for stroke, resulting in a 1.5-fold increase in risk per decade.7"

Peony4575 profile image
Peony4575

You could use your statistics to support an argument that every individual over 70 should be put on an AC to try and eradicate the risk of thrombotic stroke in the elderly altogether . Age is an increasing risk factor for death. and just about every other disease .They are now saying the disadvantages of statins in the elderly outweigh the benefits and in that age group those with the lowest cholesterol have the highest risk of death . No one knows what the long term effects of being on ACs are because they haven’t been around long enough . No one is going to make a decision on whether to take ACs purely on the basis of information found on this forum they will be guided by their medical professionals who can properly assess their individual circumstances and preferences and all this grinding on about it just adds background .

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