AF Association
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Refusing anti-coagulation

I am 40 years old. I have been diagnosed with chronic atrial fibrillation. I have bi-atrial enlargement and hypertrophy of my right ventricle. I also have trace to mild leakage in my tricuspid and mitral valve. I was diagnosed about a year ago. I have refused anti-coagulation and remain firm on this at this time. Yes. I know the risks. I am wondering if anyone else out there chooses to refuse anti-coagulation ?

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147 Replies
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Why exactly. What are you objections to something which may be important to you future life and well being.?

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I don't understand why either? There are not a lot of side affects that I can recall other than being careful about cutting oneself. And the risk of stroke is real.

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There are lot of potential side effects plus i've read about "irregularities" in the test data submitted to the FDA (US agency that approves new drugs). But of course the idea of a stroke is so frightening that I take the pill and hope for the best.. . .i'm also fearful because I will be on this stuff for decades and the drugs were not tested for long term safety....

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Thank you judy these are exactly my thoughts on this subject.

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What are the potential side effect apart from being careful not to cut yourself. I have taken Warfarin for two years and know people in uk who have taken it for over 20 years. So what is the problem compared to having a blood clot or a stroke ??

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There is just something inside me that says don't do it.... I cannot explain why specifically.

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I feel that way to. Do you have any of the CHADvasc2 risk points?

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please-please reconsider taking an anticoagulant you are a young lady and have many years in front of you .if you have children you need to protect yourself for your families sake.you certainly dont want a stroke.i have been on warfarin for years .but i am about to go on to a new one rivaoxoban so please rethink lots of love xxxx

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Thank you for your kind words and concern. Lots of love right back at you.

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I said I wasn't keen on taking Warfarin and they gave me Rivaoxoban. Good luck with it. xx

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thanks' will let you know.the warfarin nurse said that riva was more user friendly ie you dont have to watch your intake of vitamin k and you only have a blood test once a year can't be bad if it works for me lovexxxx

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I Was told by My heart nurse You have to eat about three bowls of broccoli per day to exceed your bit K level s ??

Think about it as it’s not logical if you have been advised to take it compared to the risks of not taking it ?

I'm afraid of the side effects...not so much the brain bleed, but yet unknown side effects on organ systems. I recently read about possible impairment of immune functions. Have you heard of that.....

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There will always be scare stories especially in some news papers. Even the new drugs have been around long enough for any real problems to have surfaced by now. . Warfarin has been around since 1947! In the fifteen or more years I have been taking it the worst I have is brittle nails.

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Thank you that is comforting if and when I choose to AC ....

I've also been on it 17 years and had no side effects whatever. I self test so don't have the inconvenience of visiting hospital. Haven't tried NOAC's because I am quite happy on warfarin

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I know people who have taken Warfarin for over 20years with no Side effects

I can honestly say that my ant coag (Riveroxaban) has had no effect on me at all. Even when I cut myself I dont notice any increase in bleeding.

When you consider the risks of strokes with Af it's a no brainer. I dont want to be a dribbling, paralysed, shadow of myself.

Time to get your head around this condition and do whats best for your body.

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I know you're right........and, yes, the effects of a stroke are horrible to imagine.......

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My chads score is only 1 based upon my gender... it seems unnecessary for such a low score...

I could argue that with your other heart issues it is actually two or possibly even higher. Nobody can force you to do anything of course.

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Hear hear Bob,my experience exactly!

Hi Angie

Does your research identify atrial enlargement as a risk factor for stroke in the presence of AF?

Has ablation been discussed?

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No ablation has not been discussed. I believe the practitioners are doing a wait and see on me... though my heart is in a sorry state it still works and I suffer from nothing other than random or triggered bouts of afib with minor leg swelling on occasion..... I have not run across info on my enlargement for stroke risk... the enlargement seems to pertain more towards eventual heart failure ... luckily my left ventricle is hanging in there.

I only had one, for gender, until they came up with the CHADSvasc thing that added a risk factor for being over 65, and suddenly I had 2 points and I was no longer in the gray zone.

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It's always your choice of course but at age of 60 my mother was left with no speech, loss of use in right side and some memory impairment. She lived like this for 12 years, I saw her cry, bang her head against a wall with frustration when she couldn't make us understand. All because of an af stroke, I wouldn't wish this on anyone.

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I had the same score because of my age, a history of cardio exercise, all of the right body metrics, ate carefully, lipids (and probably my microbiome) were great. I wasn't taking an anticoagulant and I had a full stroke, now I'm partially sighted. Sometimes we can be the exception to the rule.

Not sure why your so against it. I don't like tablets but they keep me going and protect my future health. Are you refusing other treatments besides medications? As long as you've read informed scholarly txt then the decision is yours. Medications are usually advised for a reason. Good luck you may need it

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Thank you for your reply. I have researched my condition thoroughly through medical journals. I realize meds are prescribed for a reason but my condition seems so mild compared to some folks though my heart is in sorry shape. I do also refuse the beta blocker at this time as I found it exhausted me .

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Hi, I was put on anti coagulants (apixaban) before my ablation in July and still have to take them as I have had a reoccurrence of symptoms. I have not had any side effects. I am 43 and my chad score is 1.

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The cardiologist I am currently seeing of course pushes the anticoagulation but says I can refuse it for now but it will be inevitable when I get older....I'm just taking it one at a time for now.

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My reason for taking the AC is the fear of having a stroke. I know someone my age who had a stroke and saw how this affected her and her family (I have a 7 yr old), so this is where my fear stems from.

I am hoping that following a successful second ablation (I am currently on the waiting list), I will be able to stop taking AC.

We all have different views and experiences that affect the decisions we make and what may seem right for one does not make it right for another. I respect your decision, I am just not brave enough.

Shelly there is said to be as many as 800 thousand strokes a year.... what should we do ? Put everyone on an anticoagulant ? I must figure this out for myself and part of figuring it out will be this community and its feedback. Thank you for your reply.

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Where do you get the low 8000 figure from?

I think she said 800,000.

But are all these from AF? Strokes can also be caused in connection with cardiovscular disease (blocked ateries etc), and for these aspirin IS recommended I believe, so it isn't so stupid to take it - but not to prevent strokes from AF. Also there seem to be strokes from bleeding, which can be caused by aspirin, Anti-coags, or neither! But all these seem to be called 'strokes'.

Of course those of us with AF are more likely to suffer from a stroke caused by the AF, hence the emphasis on anti-coags, not aspirin.

I also don't know from whom you get that figure, however, in my case I had near lethal side effects from warfarin. They were hemorrhagic bleeding in my eye, acid reflux, pancreatitis and alimentary bleeding. My CHAD score is 2, with a less than statistically significant likelihood of stroke (2.2%). After my GP said, "I hope you have stopped taking it" I am reticent to begin taking any anti-coagulant, especially since my chance of stroke is not significant. I subsequently sought advice from a cardiologist whose advice was to, "weigh the chances between treatment and non-treatment". He was quite sanguine about the profligate use of ant-coagulants. According to the U.S. NIH (National Institutes of Health) bleeding is experienced in 62% to 67% of patients taking anti-coagulants, maybe not hemorrhagic bleeding but bleeding of some sort. When I was diagnosed with atrial flutter, my physician had a knee-jerk response of prescribing an anti-coagulant. Not good. He also didn't make a CHAD assessment. The warning with the NOACs is that there is no convenient antidote in any of them. And there is no antidote to Xarelto at all. My chance of lethal side effects from warfarin is 100% versus a 2.2% annual chance of stroke. If I had a history of neurological events or my CHAD score was higher, I'd consider such therapy. Be judicious! There is a proper place for anti-coagulant therapy, no doubt. Just consider the risks.

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Seems illogical to me.

I am on Warfarin and survived severing my artery in my hand.

Mind you good first aid and exemplary A&E.

Refusing anticoagulants with our type of heart condition not a risk I am prepared to take.

Pete

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Angiegal, whilst I fully respect your right to refuse medication, it seems to me that if you are seeking assurance from someone who shares your view, you are not totally convinced that you would be doing the right thing. Having worked in a hospital environment where I have witnessed first hand, the consequences of a stroke, all I can do is wish you the best of luck. As an aside, many stroke sufferers were not aware they had AF, whereas you do!

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How can one ever be sure about anything with so many conflicting ideas and views on things now days. Thank you for your reply.

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I agree.

An example would be the controversy about cholesterol. For more than 30 years saturated fats were demonised. Millions switched to processed vegetable oils as advised by the Chief Medical Officer. Then it turned out these contained trans fats which were apparently dangerous. Now increasing numbers of cardiologists argue that statins work by reducing the inflammation that contributes to vascular disease and that the fall in cholesterol levels they cause is incidental.

I wonder if the AF and anticoagulants (AC) dilemma could be looked at this way. There does not appear to be published evidence that AC do not reduce ischaemic stroke in patients with AF. So each of us needs to decide whether our individual situation makes it risky to take AC.

A 40 year old mountaineer with paroxysmal AF, a CHAD2 score of 1 and a normal echocardiogram probably should not take an AC. 20 years later when she hangs up her mountain boots in favour of baking at weekends, and her echocardiogram shows progressive enlargement of her left atrium then it is probably time for a rethink.

And yes I did wear one of those pink and blue male chauvinist pig ties back in in the seventies until my girlfriend cut it up. And my children have not completely reformed me -:

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One thing we can be sure of is how devastating a stroke can be, not just to the sufferer but the family to, id rather side effects of AC (I don’t have any on rivaoxaban) than have my children wipe dribble off my chin. Stop being a martyr and take in the bigger picture.

Do you know if you also have valve leak you are higher risk of a clot in your heart when in AF, than just an af suffer is?

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I attended a conference on AF recently and one doctor talked about the micro emboli seen on brain scans from people with AF- he raised the question of whether younger people with AF should be AC to prevent these happening. We're not aware of them but they contribute to dementia later on. There are no definite answers to this yet but you may want to look into it, being young with chronic AF.

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Thank you for your reply.

Very interesting, these also showed on my brain scan (MRI). The consultant said they are nothing to worry about, but my GP appeared a little more concerned. I brought the concern back to my consultant and he just said nothing to worry about.

I'm a 49 year old with AF now in nsr after 2nd successful ablation this year and previously had a TIA whilst taking a noac.

I refused anticoagulation when aged 66 with a score of 3. Apart from the fact that it took me away from being a normal person, I was convinced it would endanger me and was not my best way forward. The thing is, it's not easy to go against medical advice and you feel you are damned if you do and equally damned if you don't. After a while I gave in, feeling it might be better to bleed to death than have a stroke. I felt very moribund for a few months and extremely vulnerable. Driving was scary, knives were threatening and lots of things frightened me. I was far from happy. But there was no fatal accident, no haemorrhage or bleeding and four years on (and at greater risk) I am more at ease.

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Thank you for your reply.

I am taking the middle ground with apixiban. After 2nd ablation and no active AF , at age 70, I take my nighttime dose only because the only time I experience any flutter I'm not sure of its duration is while I'm asleep. My EP explained that it takes 24 hours of af to create the clot attributed to af and that the risk of stroke is roughly equal to the risks associated with taking a.c.. He wasn't agreeing with my decision, only giving me information to be fully educated. In addition, I have been told by ER (emergency room for you Brits) doctor during visit for diverticulitis of his concern for people on a.c. when not in active fibrillation because of what he's seen in the ER with bleeding issues. Likewise my general surgeon son-in-law. So, like you, I'm making the best guess for my individual body needs and weighing the risks. If I were in persistent af, the decision would change with the circumstamces. Best wishes in your health and peace of mind.

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teach2learn wrote: "My EP explained that it takes 24 hours of af to create the clot attributed to af and that the risk of stroke is roughly equal to the risks associated with taking a.c.."

I got that same message from my cardiologist. He said Eliquis would totally thin the blood in 40 minutes to an hour. As long as I was highly symptomatic, which I am, he felt it was reasonable alternative to take if an episode came on but otherwise it was optional. If I was in persistent af, I probably would take it daily.

I won't deny i am a bit haunted though by the fact my mother took coumadin 20 years ago, after a heart valve operation, had a small stroke, bled out, and died in 48 hours. I'm adopted so looking for family history doesn't help.

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Considering I was in full-time af for months, with no meds at all except flecainide (not working but making me miserable), I kind of figured I may not be at particularly high risk for a clot, and like you, can feel my af quite well, the route I'm taking seems the most logical course for me. By the time I am active during the day, the effects of my nighttime dose are far less, so I'm balancing the risk across the best of two evils, I guess. Glad you and your doc concur.

In what way is the Flecainide causing misery?

Made me tired. No more flex since ablation.

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Angie asked a simple question, has anybody here refused AC for AF. She did not ask for advice.

If we all continue to implicitly criticise her choice, it will not encourage those people who have refused AC to say so. Nor will it encourage healthy debate.

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Thank you. I was wondering when someone would steer it back to my question.

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When you ask such a question from a group such as ours you will find it will go off at a tangent sometimes.

However my comment was purely out of concern for your wellbeing and to offer the benefit of my personal very traumatic experience.

Pete

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We are all different. I chose to take AC and you chose not to. No one need to criticise you for your choice. We all have to live with the choices we make in life. Good luck

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My brov has leaky valves and af and a narrowed Aorta that’s had to have a stent, he on anticoagulants he’s stubborn by nature, even he saw the sense to stay on them, but no one will force you, and your picture tells me your a person of determination, lol good luck, hope you change your mind, go half way with aspirin. Or eat a ton Of garlic , not technically a anticoagulant but it does unstick The platelets, my dad’s died of a clot when he was in AF, my brov doesn’t recall this and I won’t remind him,

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Aspirin has been proved not to be any use in af. As it can cause stomach irritation can't see any pint

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Lots of folks are on aspirin with gp guidance, regardless of it irritating the stomach there is a coated type, my other brov is on aspirin following a cabypass surgery some years ago,,

What is the point! Is it’s better than nothing, but my brovs consult said, as the same as that ladies , we won’t force you to take anything only advise.

Aspirin was used but, because there are far more superior drugs from 2015 NICE has recommended anticoagulants then that’s the way to go unless you are at a huge risk of bleeding, then aspirin might be considered.

Offer anticoagulants instead of aspirin for stroke prevention. Adults with atrial fibrillation (AF) should be prescribed newer medications instead of aspirin for the prevention of stroke, says NICE.9 Jul 2015

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I have been on anti coagulants (first warfarin and now a NOAC) and every day I want to stop taking it. Intuitively it feels wrong, but i'm terrified of having a stroke, especially because I live alone. My doctor refuses to go along with my desire to stop......

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Yes. This is me. It just feels wrong. I also find I am not overly concerned with stroke as having afib does not guarantee stroke....its like believing in god because you're afraid of going to hell.....so people play it safe and take an AC because they are afraid of stroke.....

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That's what I thought until I had a suspected TIA out of the blue...felt well,was secretly pleased I was not on AC,as I thought I must be low risk.

Very scary to collapse,drool,slide words and be out of it even for a few minutes.

Now taking AC

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Did you have any chads risk factors when you had the tia?

My gp had me at 1,being female.he didn't take into account my high blood pressure,although mostly controlled by medication,still a morbidity,also strong family history...I am now 2 and AC'd

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Judy diane you are being wise!! around 30 percent of strokes are AF related and unfortunately are the most severe strokes so it is something we have to take seriously. I totally accept people's right not to take meds and hope that we help people to make an informed decision

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I was initially put on warfarin which was reduced to aspirin after six months. I was then advised to stop taking the aspirin as current thinking says it’s ineffective for PAF. I must admit I wasn’t happy taking the ‘rat poison’ and still don’t want to with a CHADS score if 1 or possibly a bit higher. If my health deteriorated further then I would have to try to come to terms with AC cut currently I’m trying to make do with lifestyle changes. I don’t know if the above makes sense to you but good luck whatever you end up deciding to do.

Thank you for your reply. So are you saying you are no longer on AC ?

Having already had a stroke as a direct result of PAF I wouldn't be so foolhardy, I have been on anticoagulants for 17 years now in the knowledge that I have protection from having another stroke.

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Thank you for your reply. May I ask if you were on AC when you suffered a stroke ?

No, I was not, I was diagnosed about 12 months earlier and Cardio put me on 375mg of soluble Asprin daily but once I had the stroke I was straight onto Warfarin but now on Pradaxa these past couple of months.

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Back then people did think aspirin helped. Now we know it is as useful as a chocolate tea pot for stroke prevention in AF .

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That maybe so but I am convinced that by taking this daily it did thin the blood and prevented the stroke being more debilitating than it was thank God.

I do not wish to argue as your opinions are valuable but the science may not agree. Neither aspirin nor anticoagulants thin blood by the way. Aspirin may may it less sticky and anticoagulants slow down the clotting process but the viscosity stays the same.

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thats what she said my cardio, less sticky. x

Correct

As for aspirin no longer being recommended for stroke risk with af......do you know the actual reason? Since platelet adhesion is necessarily for clot formation, wouldn't making them less sticky (with aspirin) always slow down the clotting process, as do the NOACs? Or, do clots arising from stasis (pooling) of blood clot without the platelet activity that occurs with a wound, for example. An actual understanding on this point woild help me finally give up the hope of getting back to "an aspirin a day" which somehow makes me feel better! Thanks, in advance, for any real light you or others can shine on this subject.

Judy

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Forgive me, but if we, AFers, have a 'headache' or other pain, I think we're told to take paracetamol, not aspirin, as aspirin can 'cause' AF.

So taking aspirin to stop a stroke from AF seems to be going against that advice too. For me, I think this makes aspirin instead of an AC an even less attractive option!

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Hi Judy

This is a good question which risks being overlooked in the slightly unusual format of this forum. If you haven't found an answer already, in this particular discussion, then it may be worth asking this as a totally new question.

Thanks for the guidance......do you have any insight on the aspirin issue?

I just posted the question anew.....thanks again.

Not quite a chocolate fire guard, as Theatre nurse unless the patient has stopped aspirin, at least 5 days before and we know they have had it recently if it’s a big op we would consider cancelling due to bleeding problems.

But read the science. We are talking specifically about stroke prevention in AF not bleeding risk..

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Tell me what is stroke prevention exactly please, how does that work,

OK if we are being pedantic then stroke risk reduction may be a better term. Anti coagulation helps prevent the clots forming in the atrium or LAA (left atrial appendage) due to pooling of blood thanks to the poor pumping action of the atrium. . There are far better explanations that I can give on AF Association website.

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Apologies, I actually have paroxysmal AF not persistent. And no, I’m not anti coagulating currently. I had slight stomach problems because of the aspirin and my cardiologist told me to stop. The same cardiologist that said I didn’t require AC. I wil start taking the aspirin again though as it does have a lot of benefits aside fromIts anti coagulant properties.

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Have you lost hair since starting pradaxa?

Judydiane I've been on Pradaxa for 3 years and have no undue hair loss - just the usual unruly mop.

Judy, I’ve been on Pradaxa for about 2 years and have lost a lot of hair.

Has your hair loss stopped? I fear it might continue til i'm bald! Have you heard of that happening?

No it hasn’t, falls out daily. I had unusually thick hair now is normal thickness, but I fear losing more. Not stopping anticoagulant though. I’m 76.

Sometimes I think mine has stopped and now it just doesn't grow. Quite discouraging.

To answer your question, no I have not declined anticoagulation. I am 73 and have only had 3 overt episodes of PAF. I am a retired nurse specialist and the heart is NOT my area of expertise.

I have however declined statins!! Any decisions regarding your health are yours to make. Dr Sanjay Gupta has a YouTube video on the value of lifestyle choices rather than the easier option of pill popping.

I will not offer advice as you are not asking for it but I have no intention of stopping anticoagulation in spite of a predisposition to falling heavily!!

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I also like Sanjay's description of the risk of stroke, and the use of anticoagulants. Nice little description of how to understand risk.

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Hi Bagrat

That's interesting. I think you are implying that AF may be clinically silent so we should not base our decision on AC on the frequency of overt AF as you put it. I had assumed that if we are aware when we have AF sometimes then we are always aware, assuming we are not asleep. That is true in my case.

Of course that might be nonsense, I would be interested to hear other points of view.

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All of my "overt" episodes have occurred at night but I assume there may be minor runs of AF when I'm asleep. I also wait with interest for others response

What do you know that cardiological medicine doesn’t ? Seriously, what is your background ? Are you a cardiologist doing research ? It’s your life, but please don’t encourage others to take a similar ignorant view.

Sorry, I do wish you well, I know you’re young ( so stroke risk low, unless you have other risk factors you havn’t told us about ) and you’re entitled to make your own decisions, but few people have studied medicine/physiology and so your decision goes against that prevailing informed, educated wisdom. On a site like this I’d argue at best, that’s not clever.

Please tell me you don’t believe a diet of tofu will sort your heart problems out .....

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And Therin lies the problem. People like you are poster children for having nothing to do with these forums. It’s perfectly obvious the lady In question is extremely nervous about taking certain medications and wanted to know if anyone else was in the same boat. I was never happy taking warfarin and extremely happy to be downgraded to aspirin. The longer I can minimise the crap I put into my body the better. However, I am not so obtuse as to refuse such medication should my cardiologist Insist.

I could turn your argument on it’s head and say what knowledge do YOU have of Cardiology and ask you to state your bona fides but we’ll leave it there I think.

If someone comes here asking for peoples experiences as opposed to advice you should be willing to give it to them in a unjudgemental, not hectoring fashion. Otherwise yours is just another unsolicited opinion and you know what they say about opinions!

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Staxman your post is outrageous. Apologise.

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Tofu, No, but magnesium, CoQ10, L-carnitine, hawthorn, vitamin D, a good multi-vit-and-mineral-tablet, fish oil, exercise in moderation, weightloss, good dentistry, and probably a host of other things may all help, and doctors are not generally trained to know all that. So, No, doctors, it seems, don't know everything. That's why this forum is sooooooooo helpful!!!!

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I did not encourage anyone to discontinue their anticoagulants.....I am simply asking if anyone else chooses not to .....do not wish me well after insulting me.

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I'm so sorry you felt you had to go anonymous. No one should have to put up with that. I think Staxman was out of order and must apologise. Or be banned temporarily.

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I watched both my mum and dad die slowly and horribly after having strokes. When I was hesitantly offered Apixiban after my AF was diagnosed, I grabbed at it with both hands. No way do I want to go through the horror of a stroke and I do not want to inflict the subsequent misery on my family.

We all have to make our own decisions and face our own fears but please think of your family.

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Even though rivaroxaban has not been available for use for a decent time period to pronounce it safe for long term use, I pushed for it to be given to me. I am 57 yo mostly in NSR PAF. I figured with the blood tests being every 6 months checking on kidney and liver function I would stop it at the first signs of any issue. Only issue I've noted so far is I gained a bit of weight. I hope you find your answer.

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My GP would like me on them but my cardiologist doesn't as he thinks they will interact with other drugs I am on. My AF comes in episodes and since I have been taking 1.25mg bisoprolol at night I've not had any plus I was vit d deficient and have been correcting that and my heart has been very stable since. I do take high strength fish oils and turmeric and I am 52 I will reconsider as time goes on and am open to change if things worsen.

High strength fish oils will 'thin' the blood', making clotting less likely, but there is no way of measuring how much is needed to be effective, and it would vary from product to product. So if someone really didn't want to use an anticoagulant this could help. I think Vit E may help as well, but only in the sense that something is better than nothing.

Hidden, I think I would be cautious about not using an NOAC given your other heart-health problems. If you really don't want to go down that line, then tackling 'life-style' factors to try to improve the strength of your heart does seem very important, for example, making sure your weight is optimum, exercising to strengthen your heart - but not too much, taking magnesium (search on here for details including possible contraindications). I also suggest your read 'The Sinatra Solution: Metabolic Cardiology' by Stephen T Sinatra.

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Hello Again,

People on here are only trying to help you with your decision. As someone who has been through the AF wringer over the last 2 years I can tell you that Riveroxaban is hassle free and without any noticeable side effects (at least at 20mg).

If you are struggling with this just wait until they want to put you on Amiodarone!

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The meds I’m taking for A F are working as I rarely have an episode but cardiologist suddenly wanted me on amiodarone. I flatly refused because I had researched it.

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I don't think anyone else is that silly

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Is it necessarily silly not to take a tablet daily, which may eventually be shown to cause cancer or other serious problems? We may all vote for AC now - and then live to regret it in the future, especially if we are going to be around a long time . . .

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At least if you don't take it you wont know if you have cancer, if you do take it there is a good chance you'll live long enough to get it

I was 64 when I first had AF and it took me two years to decide to take Apixaban I just couldn't make the decision as most of the time when not in AF I didn't really think about stroke risk. But after a bout of AF It would really worry me maybe there were clots flying around in my body and I was not protecting myself as best I could. and when it got to the stage that I worried so much about the stroke risk and a lot less about the affects of the Apixaban I bit the bullet and started the tablets. I feel a lot happier now and wouldn't want to stop taking the Apixaban you are the only one that can decide and you are doing the right think by asking people how they came to their decisions some people pop pills like sweets and some hate the very idea of putting things in their bodies I am one of them. we are all very different but in the end it is up to you.

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I fought against anti-coagulation after I had a stroke, but I was seeing an alternative doctor who I had faith in and I felt safe with his treatment.

Since coming back to the UK to live, I decided to go on Warfarin that was 10 years ago. There have been no side effects and I feel I am doing as much as I can to keep healthy. I am 78years old and I walk every day and swim for an hour twice a week and I feel great.

At 40 years old you have to be careful but if you are adamant that you don't want to go on anti-coagulants , get some advice from someone who knows about vitamins and supplements.

,

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Rather late to the argument. I had PAF since successfully ablated and take anticoagulant and will do for the rest of my life. I had a neighbour who also had AF and declined anticoagulant he died after having a stroke. It took him 8 years having lost all functionality except for his brain. Yes I am very happy with Apixiban.

Peter

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As Bob says,a Chad score of 1 for being female may not actually be enough to protect you.I was rated as such by my gp..but with underlying high Blood pressure,although medicated for it,should have been a 2. Result, two weeks ago I had a suspectedTIA.I had not felt As well for ages,had lost weight,yet still had this possible warning of catastrophe.Having lost both mum,grandma to strokes,and dad and his dad to heart disease,I am now very grateful to be protected against something that was a strong possibility rather than fret about possible side effects of medication.The side effect of AF is a stroke!!

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I just had second ablation here in North Carolina. My cardiologist says possibly in Jan 2018 that I may be able to come off of Xarelto. I started having Afib at age 45 and am now 49. The choice is yours to make and wish you the best.

I have HOCM with perm AF. I was on warfarin for a couple of years, but it was never stable so I was usually outside of the therapeutic range. As a result of not being properly anti coagulated I have had a clot in my renal artery (which killed a kidney) and I have a 1cm clot in my left atrial appendage (which so far has stayed there, thank goodness). I am now on a NOAC called Apixaban with no side effects, not even excessive bleeding when I cut myself or have blood taken. After my experience, I feel the risks from not taking an anticoagulant for people with AF hugely outweigh any potential side-effects...and I think side-effects have been mostly mitigated with the new NOACs...take medical advice from several doctors (including cardiologist and GP) but I would be amazed if the advice was not always the same....take the anticoagulant !

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hi, i too refused anti coagulation treatment as with working i didn't have time to go backwards and forwards for blood tests with warfarin so i was offered rivaroxaban which when i read the leaflet it frightened me to death. after numerous admissions to a and e I was sent to my EP specialist and told I needed the ablation and the EP specialist couldn't do it unless i was on a blood thinner so hence i went on rivoroxaban and it's fine, i dont bleed to death if i cut myself it just takes a little longer to stop. the benefits are enormous as i have seen the devastating affects of a stroke on a dear friend of mine so i'm not worrying about taking them now.

Hello,

Sorry for a late and perhaps no longer relevant response.

Like you, I also did not like anti-coagulation. I suffered frequent, although relatively symptom free episodes of AF. However, the increased danger of a stroke was a motivation to seek a possible permanent solution. After a fairly intensive research I reached a conclusion that an open-heart Maze surgery offered the most likely chance of a success. It needs to be said that my cardiologist also supported my reasoning. Although a major assault on one’s body, I am yet to regain my original weight and fitness, the result has been fantastic. Since the surgery, over three months ago, not a single AF episode that I am aware of. Certainly, if or when your valves may need a help, then the Maze Procedure could be in order.

In the interim, taking a 100 mg dose of aspirin may offer a small degree of protection. I understand a percentage (around 10%?) of population experiences no reduction in the clotting function. In my case, the platelets cooperated, so I had been taking aspirin (which gets a good press for a several other reasons) for about ten years.

Good luck and health, whatever you may chose

J (-:

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my problem is the apparent fact that coming off of NOACs can cause a stroke =:0 this worries me as I have done alot of online research and its actually happened to people. When I first saw the commercial warning people that if they stop Eliquis they can have a stroke I thought that meant they would just be back to the same danger as before they took it, but apparently coming off it can actually CAUSE a stroke =:0 For instance if you need an operation you would have to come off it and couldn't use anything else that might cause bleeding so that could be a danger for a stroke. So I am afraid of NOACS :( My cardiologist insisted I go on one after several episodes this summer so I opted for the lowest dose 2.5mgs bid. But of course now he is saying that is too low as I weigh 145lb (F 5'8" 79yo) I am also taking fish oil/garlic but he has no knowledge about anything natural :(

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I watched my father fight valiantly against a stroke for 17 weeks. It was the worst thing ever. I take my noac each morning without a thought. I do not ever want to have to be valiant x

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My sister-in-law, mid 70’s about 7 years ago, was advised by her physician to start an anticoagulant for AFib. She refused, deciding to take a low dose aspirin instead. She had a major stroke shortly thereafter and is now confined to a nursing home. She and her husband had enjoyed their retirement spending summers in Canada and winters in California. That has ended. I’m not trying to scare you as apparently you have researched the subject and made the right decision for you. I have read research that concluded that strokes in A fib patients are generally more destructive than in patients without AFib. As a matter of fact she was in the hospital parking lot when her stroke happened, ostensibly the best place to be, near help. She is now paralyzed on one side. I also have AF am on Pradaxa and have had some hair loss, but have no plans to stop the anticoagulant.

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I had to come off because I reacted badly to any sort of anti-coagulation. Am thinking about starting Aspirin, so as to have at least low protection. My oncologist says the same that I found, Aspirin (or ASS) is about half as effective as Marcumar or NOACs, so nut like you're taking nothing. But as yet not taking anything.

I know there is some talk about ASS not being any help for AF. That is not true. The NOAC's are more effective (or so the studies say up to now and there has been some trouble over these studies and who knows what will ne found out in the next ten years?). But just recently a new study by Bayer (Xarelto) was stopped because they found out ASS was just as effective for stroke prevention and less dangerous. So all is still open....

marketwatch.com/story/bayer...

I know this is not about PAF, but it is about stroke prevention in people who have had a stroke already. And if it does not work there (or no better than ASS) then it won't do so in PAF.

Thank you for the link.. I'm surprised this study's findings haven't made big news.....I will discuss it with my cardio as I would much prefer an aspirin over NOAC...

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I think that misses the point. Perhaps they were trying to show that Xarelto would be best for all forms of stroke. The trial showed that is not true, but for people with AF it may still be the best solution.

I can appreciate how you feel about it. I started on Xarelto after being diagnosed with afib. My episodes are now rare, although I'm asymptomatic so I can't really be sure, but I'm more concerned with stroke than potential bleeding episodes. I'd like to stop taking Xarelto but, under the circumstances, I probably won't. Good Luck!!

I have been on anticoagulants for 14 years (largely Warfarin). I’m only 1 on the Chad score and believe I could get by with an aspirin. Interestingly, all the medicos that I have spoken with have told me I’d probably be ok but better to be sure. I wish there was less propensity to medicate people and more individual analysis re needs. Just shove on medication is the name of the game. I’m hoping to find a natural alternative. Good luck with it all.

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I was advised my my heart specialist to take a small dose of Warfarin each day as the risk of clotting is worse if your heart is not beating regularly. I have been taking 3mg Warfarin for two years now without any problems it just means you need a blood INR test once a month. They have used Warfarin for over 50 years so it’s well proven and I have had no problems whatsoever so don’t understand your reluctance to take it ??

Some don't find it quite as simple.

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Don’t see why. You are just going to take well proven medication to lessen the risk of blood clots or a stroke. Surely no contest ?

Whilst anticoagulation has advantages for most, it increases the risks of haemorrhages. I found that very bothersome and it took a year or so to relax.

Warfarin works well when it works well but for those who find INR stability elusive it can be a challenge.

If somebody made the decision not to take NOACs or Warfarin an alternative way could help.

I read that the combination of these supplements have an anti coagulation effect:

Nattokinase , B3 , Vitamin C , Fish Oil , Q10. Maybe there was another supplement. I can;t remember. It was recommended by a medical professional. If I find the link again I will post it.

Nattokinase seems to be the most important supplement. It has an anti coagulation effect by reducing the action of fibrin I think. Please research. ncbi.nlm.nih.gov/pmc/articl...

Cheers

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Here the link about an alternative AC treatment with Nattokinase: afibbers.org/resources/aspi...

Hans R. Larsen MSc, ChE - Hans Larsen is an expert on Lone Atrial Fibrillation, is a professional engineer and holds a masters degree in chemical engineering.

He is the author of six books - "Lone Atrial Fibrillation: Toward a Cure Vol I,II, III, IV & V" and "Thrombosis and Stroke Prevention" now in its 2nd edition. He developed a lifelong interest in biochemistry and nutrition through his early studies with Professor Henrik Dam, the Nobel Prize-winning discoverer of vitamin K. Later he honed his abstracting skills by abstracting for Chemical Abstracts, the world's largest abstracting service. After a successful career in research and development Mr. Larsen nurtured a keen interest in alternative medicine and the biochemistry and effects of natural antioxidants. Mr. Larsen is a firm believer in magnesium and the benefits of proper nutrition, exercise and judicious supplementation. Mr. Larsen started International Health News in 1991 and by now has built up a sizeable core of dedicated subscribers all over the world. International Health News established its presence on the World Wide Web in November 1994. The Afib Report began publication in 2001 as a means of disseminating Mr. Larsen's research on lone atrial fibrillation.

I was in paroxymal afib for around 4 years and not on AC by choice. I had a CHADS score of zero. Just had a catheter cardiac ablation so now on an AC (rivaroxaban) for 3 months; if the Afib stays gone I plan to come off AC. I eventually used fleccanide as a pill in the pocket to cut short Afib episodes prior to ablation as their frequency had increased to twice weekly. I was very relieved to have the ablation as I have other health issues to deal with. CHADS is a crude scoring system but my judgement was to avoid the medication risk and my cardiologist was happy (or not unhappy) with that. He did offer AC. I can understand people choosing differently.

FWIW taking rivaroxaban has not had any noticeable side effects so far and is very convenient but I will be happier off it, all going well with the ablation.

Hope that is helpful.

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After reading all these comments and taking my own PAF and subsequent successful ablation 11 months ago with follow on PE afterwards to survive - I have come to the final and justified conclusion that is it all comes down to personal "Risk Management" and what you are willing and able to roll the dice over in your own life. No one here has exactly the same case input. WE are all the same and yet present differently. As the old saying goes, Your mileage may vary! Replace mileage with quality of life and years.

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So what did you decide about AC Rider?

I did several bouts of AC.

Survival without it was not an option with a pulmonary embolism on top of ablation.

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I would NEVER consider stop taking my blood thinners. The risk of stroke or blood clot is not worth it. Besides I also have Factor V Leiden. So even thinking about it would be risky... I LOVE LIFE... MY LIFE.

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I was recently prescribed anticoagulant by my GP “just in case.”

In general I am conservative when it comes to prescription drugs. I am esp conservative if they are to be taken indefinitely.

I am waiting to see a EC before I decide, but I will likely decline the prescription.

Me: 53 yo, proximal lone AFib.

Here the link for an alternative AC treatment with Nattokinase : afibbers.org/resources/aspi...

Hans R. Larsen MSc, ChE - Hans Larsen is an expert on Lone Atrial Fibrillation, is a professional engineer and holds a masters degree in chemical engineering.

He is the author of six books - "Lone Atrial Fibrillation: Toward a Cure Vol I,II, III, IV & V" and "Thrombosis and Stroke Prevention" now in its 2nd edition. He developed a lifelong interest in biochemistry and nutrition through his early studies with Professor Henrik Dam, the Nobel Prize-winning discoverer of vitamin K. Later he honed his abstracting skills by abstracting for Chemical Abstracts, the world's largest abstracting service. After a successful career in research and development Mr. Larsen nurtured a keen interest in alternative medicine and the biochemistry and effects of natural antioxidants. Mr. Larsen is a firm believer in magnesium and the benefits of proper nutrition, exercise and judicious supplementation. Mr. Larsen started International Health News in 1991 and by now has built up a sizeable core of dedicated subscribers all over the world. International Health News established its presence on the World Wide Web in November 1994. The Afib Report began publication in 2001 as a means of disseminating Mr. Larsen's research on lone atrial fibrillation.

If you are not going to take an anti-coagulant have you considered the following for the benefit of your family, friends and health care workers:

An Advance Decision detailing treatment you wish to receive or not should you suffer a serious neurological insult post a stroke. There is a web site that provides a template all you have to do is fill in the boxes.

A Community "Do Not Actively Resuscitate" form from your GP. To be carried with you at all times and included with the Advanced Decision in your medical notes. Scan this into your phone if you can.

A court approved Power of Attorney. Doing this when you are alive is cheaper and less stressful on those who will outlive you then post mortem.

If you can do this before Christmas then should you stroke or die the emotional stress on the family and the pressures on the NHS will be lessened.

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Perhaps the topics you raise here Steven would be better aired on their own. This post has already had far more responses than most and it looks as if we have lost the originator.

This seems way over the top. Would you consider deleting your post? Or have I missed something?

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I can understand your position but not endorse it. I was prescribed dronedarone and later given an amiodarone IV in hospital. Both gave me a mass in each lung and I was sufficiently close to death when I was in hospital that they wanted to ring my wife at 1:15 am. When the EP who prescribed the dronedarone recommended that I shouldn't take an anticoagulant because I am a bleed risk, I went along with it as I clearly have a rare reaction to some medication and I've spent many years doing cardio exercise. On 6 July 2016 I had a full stroke that has left me partially sighted, and fortunately neuroplasticity has restored most of my cognitative ability. Would I make the same decision not to take an anticoagulant? Absolutely not! In any case I still have the bleed risk and post-stroke I take an anticoagulant that I was advised not to take.

Hi - I fully understand your concern. I, too, refused to take an anticoagulant and suffered a TIA - mild stroke. Scariest thing that has ever happened to me. And, my cardiologist tells me over and over how lucky I am to have not had a serious, debilitating stroke. I simply didn't like the idea of being on a blood thinner because of the chance of bleeding, so chose not to go on one. My CHADS score was low, but not zero, so I should've gone on one when advised by my cardiologist. I am now on one (Eliquis) ever since suffering the mini stroke and have had no problems whatsoever. I also recently had an ablation which was successful. Please reconsider. With atrial fibrillation, you have a much higher chance of having a stroke not being on one. Good luck!

I have serious AF and have been taking Warfrain for about 4 years. I understand your hesitation but there is no way I would not take it. I know if ever I get a clot break off I'm protected from a stroke that could kill me. I know what I would rather do. Take the pills you might just regret it one day. Dr's don't recommend these drugs lightly.

Hello, I have been reading this post and all of the comments, and for the most part, I can see the concern for this person. However, she is now showing up as "Hidden" and I cannot find her name on the forum. As she appears to not be replying any more, I am turning off replying on the post. Could somebody please private message me with the lady's forum name or "handle" so that I can contact her to ensure she is ok.

Thank you

Rachel - AF Association - Patient Services Associate

The ability to reply to this post has been turned off.

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