Are anticoagulants necessary for 'lone' AF? - AF Association

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Are anticoagulants necessary for 'lone' AF?

AbFab62 profile image

I'm 55 and have suffered paroxysmal AF for the past 30 years. Over the last two or three years however my AF has become persistent. Because of this I recently had a catheter ablation and was prescribed apixaban which I had to take for 28 days prior to the procedure and have been advised to keep taking indefinitely, or at least until my follow up appointment.

I had the ablation five weeks ago and over the past week I have developed quite severe neck pain which I've never suffered from before. Neck pain is a know side effect of taking apixiban.

For my age I'm pretty fit. I'm 6' (183cm) and 11.5 stone (73kg) i.e. a very reasonable bmi and have no comorbidities. The first thing I was told as I came round from the anesthetic after the ablation was that everything went well and that I am 'very fit for my age'. I say this because studies have shown that I am at no higher risk of stroke than any healthy 55 year old. Why then do I need to be on anticoagulants with their adverse side effects?

My follow up appointment isn't until January and really don't want to be on apixiban until then as I feel for it is totally un-necessary in my case and I do not want to suffer the side effects.

Any knowledgeable advice would be greatly appreciated.

26 Replies

Hi I'm the same as you played football from 2 years of age 61 now and still playing plus weight train was an army PTI run orentering competitions in Germany 50 miles in 2 days been in persistent AF for 5 years had one ablation heart beats 50 -60 min used to beat 38 -48 before af

On apixaban for the last 2 years after what they thought was a TIA right hand went numb for about 5 secs dropped my phone but was fine after it

Doc put me on apixaban for the rest of my life get pain in my muscles and round my shoulders but if I have a stroke it could be a lot worse

The last thing I want is to be a burden to my wife and 4 girls stay on them if I was you

A cure will be found and we can go back to normal life

Good luck keep fit👍

AbFab62 profile image
AbFab62 in reply to Geza10

AF is a sod, especially for folk like us with no known cause. Good luck to you too.

Anyone with AF, regardless of the type or whether or not symptomatic or whether is is controlled is advised to take anticoagulants - period. There is one exception and that is whether the risks of bleeding are higher than the risk of stroke and that is an evaluation which your doctors will make.

Anticoagulants reduce but do not remove the higher risk of stroke. Fitness is no indication of stroke risk nor will it reduce your risk of stroke from AF although obviously you may live well longer because of your fitness.

This point was emphasized on the essential nature of anti-coagulation in an afternoon session as first line prophylactic therapy even if there was no AF present and would be advised for life regardless of CHADS score or whether or not you have episodes. Any other medication or procedure is a treatment to reduce symptoms. There was no room for discussion on these points - read the longer term studies and you won’t even question it. Fitter people with AF will live longer anyway but just as many fit people will have strokes because of AF - you need to distinguish between morbidity risk and stroke risk from AF. I don’t think I had been clear on this point until the Patient Day, it may be a good idea to download the slides from the presentation when they come on-line.

I have to say I posted a very similar post after my ablation some Years ago. I have completely changed my mind and having suffered a TIA after a period off anti-coagulants am totally convinced. I hate taking drugs but anticoagulants are one I don’t even think about now.

Best wishes CD,

Could I be more adamant?

CDreamer profile image
CDreamer in reply to CDreamer

PS - most studies were based on those people with CHADs score of 2 or more so there are no numbers for anyone with score of less.- a point which had escaped me previously.

in reply to CDreamer

Good morning CD

Could you clarify this sentence from paragraph 3, which seems to mean that the CHADS score is no longer relevant. Or have I misunderstood?

“This point was emphasized on the essential nature of anti-coagulation in an afternoon session as first line prophylactic therapy even if there was no AF present and would be advised for life regardless of CHADS score or whether or not you have episodes.”

CDreamer profile image
CDreamer in reply to

CHADS is still important for assessing the risk. What they were emphasising is that all the the longer term studies for anticoagulation and stroke risk for lone AF consisted of a patient selection who had a CHADS score of 2 or more. Although there were no specific studies looking at people with a CHADS score of less than 2, recent indications were that they ‘believed’ that everyone with AF benefitted from being anti coagulated by looking at the general morbidity figures but until there were studies looking at people with a score of less than 2, they couldn’t provide the statistics. The general consensus is therefore that even with a zero CHADS score you would be advised to be anti-coagulated. At least that was my understanding but there was a lot to take in and I suggest if you want the full information you download the slides when they are released.

AbFab62 profile image
AbFab62 in reply to CDreamer

Until today I'd never heard of a CHADs score. I've just googled it and I believe that my CHADs score must be very low, if not zero, as I have no heath issues other than my AF. I've just taken my BP (110/67) with pulse 69. Before the ablation my resting pulse ranged between 50-60. My bmi is 21.9, my cholesterol level is below 5 mmol/L, I'm only 55 and I lead a very active life.

As you say until recently "they ‘believed’ that everyone with AF benefitted from being anti coagulated ", but I believe that attitude is changing which is why I question whether anti-coagulants are right for me. As I've said I've had AF for 30 years without anti-coagulants and I'm still here and fighting fit.

CDreamer profile image
CDreamer in reply to AbFab62

Actually the movement is now in the opposite direction - toward anticoagulant even if you have zero score. It’s not a perfect tool, it’s just a guideline, that is what the conference meeting was saying. If you live in US there is a lot more controversy but in UK most EPs seem to be agreed.

My EP 5 years ago ‘reluctantly agreed’ for me to stop anticoagulants after successful ablation after some US studies on following people to 12 months after ablation but more recent studies in UK show that anticoagulants lower stroke risk for everyone with AF, whether or not they suffer episodes.

All I can say is at the very first sign of AF returning was - OMG - I’m not anticoagulated - but I was 24 hours later! And I still had a TIA.

CDreamer profile image
CDreamer in reply to AbFab62

Just because you have had one AF episode means you have 5 times the risk of having a stroke than a person without AF of similar age and fitness. Now that risk may only be 5/100 the first year, but it will increase every year. It’s all about risk assessment and of course risk:benefit. But at the end of the day people still have strokes on anticoagulants and people don’t strokes when they don’t take them. It is a personal choice but I think it needs to be an informed choice.

May I ask what do you perceive as the adverse side effects?

AbFab62 profile image
AbFab62 in reply to CDreamer

For me the adverse effect is the neck pain that's developed over the past week. Of course it could be totally unrelated to the apixiban. I'm also concerned about cutting myself at work or when out climbing/hill-walking.

in reply to CDreamer

Thank you for explaining that.

in reply to CDreamer

Thankyou for posting this. Very important to revisit for those of us( me) that cannot seem to quit asking “ do I really need this?”. The answer for me is Hell Yes, but there are times I have trouble accepting it💜

AbFab62 profile image
AbFab62 in reply to CDreamer

Thanks CDreamer, but not all cardiologists agree. Please see link below.

AbFab62 profile image
AbFab62 in reply to CDreamer

Also please see this.

CDreamer profile image
CDreamer in reply to AbFab62

From 1993 - really?

Auriculaire profile image
Auriculaire in reply to CDreamer

This does not make sense because it seems to say that a person who has one episode of afib ( perhaps provoked by an adverse reaction to a drug such as a fluoroquinolone antibiotic) should then be on anti coagulation for the rest of their life even if they never have another episode. Why then bother with the CHADSVASC score? And why not stick all women over the age of 65 on anticoagulants? If you do not have episodes of afib where is the mechanism for provoking the stroke?

As I’m sure you know, a lot of care is taken before, during and after an ablation to minimise the risk of having a devastating stroke. I’m not medically trained, but it is my understanding that burning or freezing tissue within the heart effectively increases that risk, hence the anticoagulant. Having worked with stroke victims in the past, there is no doubt in my mind that they would have happily put up with a pain in the neck rather than suffer the effects of a stroke for the rest of their lives. Of course the choice is yours, but I would follow the advice of your EP.....

There are plenty of other anti-coagulants, including the original one warfarin. I'd try them all first to see if one suits you before taking the drastic step of coming off them with the attendent increased risk of stroke. Your GP should be able to arrange this now so you have tried them all before your consultant appointment, though (s)he may have to phone the consultant's secretary to get the authorisation to change, depending on your local policy.

Strokes and heart attacks don't differentiate those who are fit or unfit, or at least apart from those who are obese or smoke.

Well you learn something new everyday so they say. I never knew

that anticoagulant gave you neck pain, I have been suffering since

having a pacemaker fitted a month ago and I thought it was because

of the position of my neck over an extended period of time because

of problems during the op. Im going now to look at the contra- indications on my anticoagulant to see if its the same.

I agree with everything said so far, I would never ever stop taking

the anticoagulant, neck pain is a small price to pay if the result otherwise could be a stroke. Better safe than sorry.

I am 59, in great shape and had ablation procedure 11 months ago. After 3 months of normal sinus rhythm, my doctor allowed me to get off anti-coagulants. i too was having some side effects and was persistent about getting off the drugs. I have remained in sinus rhythm with exception of some PAC's here and there and a random afib episode that is short lived. The doctor is always going to recommend that you stay on anti-coagulants since it is a safe recommendation. I think it is a case by case basis, but am very comfortable with my decision.

FlapJack profile image
FlapJack in reply to Restcfo1

And long may that continue.......

Thanks to all for your advice. I will stay on what's prescribed, but I will push my EP regarding the controversy surrounding 'lone' AF and the risk of stoke. Incidentally over the years I've had AF, various consultants have advised anticoagulants, but until my ablation I've always refused to take them. Despite suffering AF for 30 years, I'm still here and still fighting fit without taking anticoagulants. ;)

CDreamer profile image
CDreamer in reply to AbFab62

And we all hope you will continue to be for many more years. Best wishes CD.

Thanks CDreamer. Best wishes to you too.

When I had my first episode of atrial flutter in April and had a cardioversion I was put on anticoagulants for 4 weeks. The cardiologist said the point in the CHADSVASC score for being female wasn’t really a full point. I have had mild hypertension for a couple of years controlled by medication so I get 1 point for that but at 54 with no other co-morbidities he believed my stroke risk was very low and I didn’t need to stay on them. Six weeks later I went into Atrial Flutter again and it morphed into Atrial Fibrillation. I was take by ambulance to hospital. My EP saw me the next day and put me on anticoagulants and booked an ablation for August. As instructed I stopped the anticoagulant 48 hours prior to the procedure but a TOE (transoesophageal echocardiogram) revealed a clot in my left atrial appendage so the ablation was abandoned. Had I not have been scheduled for the procedure that day I would have been blissfully unaware of my body’s ability to form a clot in my heart which could have caused a stroke. My EP said it was very rare to see a clot, especially in someone who had been anticoagulated. Even though I’d initially been seen as low risk I’ll be on anticoagulants for life. I’ve seen too many devastating effects of strokes on individuals and their families. I’m not worried about dying from a stroke, I’m worried about living after having a bad one.

I cannot advise you. I can only tell you of my own experience. I tried all NOACs plus Warfarin and did badly on all of them. And neck pain was definitely one of the side effetcs. As I took them all in all over a year some of the stiffness is left even now. I was even hospitalized for a bleeding kidney. Warfarin was the best, but side effects for me still too much. Maybe because I had chemo some years ago, but my decision was to bear the risk. No, I do not like it, yes, I am frightened of a stroke. But I want tol live, and I could not because of debilitating side effects. So I live with a risk I do not like. It is a very individual decision.

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