I have just had what is probably my 2nd or 3rd episode of AF in 3 years. I went back into normal Rhythm after about 19 hours and have remained there. I am taking apixiban for the stroke risk. So I have a dilemma. The private cardiologist I spoke to advised that I needed it for 3 weeks as I only have one point on a CHADS score and that for being female and normal rhythm. I advised my GP surgery of this but they want me to stay on the apixiban until I have seen NHS cardiology. Who knows when that will be.
So my question is, does anyone else have experience of coming on and off apixaban for PAF, or do you tend to stay on it once you have had a diagnosed episode? Is it a pill in pocket candidate? I am aware that I need to have a plan for the next episode but not sure whether a blood thinner would normally be part of it.
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Sixtyslidogirl
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You will find opinions vary from Doctor to Doctor but essentially recommendations for CHADS score of 0 = your choice. 1=recommended, 2+=pretty much essential.
Personally I would go with your GP’s advice.
There is some evidence to say that coming off anticoagulants and then going back on is actually worse than not taking them in the first place so I would never consider taking as a PIP.
I came off anticoagulants after 2nd ablation, no AF for 12 months, 9 months after that I had a TIA, not a pleasant experience, so couldn’t get back on them quick enough and now will be for life.
I know using anticoagulation as a PIP has been talked about and debated but having researched fairly extensively and having had AF now for over 15 years I am now of the opinion that unless you have contraindications for oral anticoagulants or suffer badly from side effects, I would rather feel protected and safer taking them than not.
I think you will find that the majority on this forum will say similar but at the end of the day it is your body, your choice - just make it an informed choice having assessed the benefit:risk for you and knowing that just having one episode of AF can increase your risk of stroke and that risk by a factor of 5 and increases year on year. When I was first diagnosed age 57 I had a no more than average population risk of about 10% in that year, now it is something like 23% last time I checked.
My younger self argued against having to take anticoagulants but the more I learn the more convinced I am that better with than without.
You essential have a risk score of Zero. The advice to take AC's sounds more like your GP doesn't want to accept the responsibility than evidence based advice.
Note that for someone like yourself, not only do they not offer AC's, they don't even consider them. So I would go with your cardiologist's advice.
Personally, I've tried on and off AC's or PIP anti-coagulation, however for someone with a higher CHADS score like myself, it's still not widely accepted, although it is going into trial in the US . But in your case, it's not really PIP, since your score is so low.
As to going on and off, being worse than just off, that was an early thought before the NOAC's were studied and has since been proven wrong, according to ep I spoke with.
Afib can make our life tough enough as is. No reason to add to that unnecessarily.
Although I normally agree with much you post in this instance I have to disagree with your comments about GP not wanting to take responsibility. You cannot possibly know that.. It sounds to me very much they are concerned enough to want a second opinion from an NHS cardiologist because they may have concerns about the advice of the first cardiologist’s advice. That sounds like responsible diligence to me. Unfortunately the very long waiting times to see a cardiologist in the UK for something like AF drives people to go see a private cardiologist.
In the UK - if you see a specialist privately that specialist does not have access to a patients records. If you are referred to an NHS specialist through your GP - your specialist will have the relevant information.
Like anywhere there are some doctors who are more diligent than others. GPs normally should have a much broader view on a patients’ health than a cardiologist. NICE guidelines are simply guidelines and a score of 1 being for female is a debatable in medical circles - the advice regarding anticoagulants has always differed in the US to the UK, the US still favouring asprin until quite recently. The UK lags way behind the rest of Europe for AF induced stroke and the AFA have spent a lot of time and effort to ensure that everyone diagnosed with AF gets good information about anticoagulants. If in doubt my advice would be to ring one of the team at the AFA - they really know their stuff.
It is easy to not take an anticoagulant but it is much harder to undo a stroke but still the patient’s decision as to accept a treatment or not.
You are correct, no way for me to know what is in the GP's mind. But unfortunately, according to the OP, it may be a long time till she sees the NHS cardiologist. So the decision is what to do now -- continue on with AC's, or take the advice of a private cardiologist who seems to think the risks of AC's outweigh any benefits for in her case with a score of "1".
I again, refer to UK guidelines -- both to the link I supplied and the link you supplied. Both suggest she does not need AC's, but in the end, it's not just a medical decision, but a personal one.
Thank you for posting James. I am in agreement with you. It seems no one ever mentions the possibility of a hemorrhagic stroke when taking blood thinners. The probability is low but it exists. It is of course only one issue to consider but deserves consideration.
I have infrequent episodes of AFIB that are controlled by a low dose of metoprolol. I am aware when they occur. I wear a smart watch 24/7 and use a kardia monitor as needed. My score on the Chads is 2 because of my age and gender. I use a blood thinner as pill in the pocket. So far it has worked for me. However, there are conditions that if they occur I would take the blood thinner daily. I would encourage everyone to do their research, and talk with their doctor before deciding what is best for them.
It's one of those hot topics with a lot of confirmation bias. Those that take them, strongly support their decision. Those that don't, the same. My old cardiologist drew two columns on a chalk board. One showed my risk of stroke with thinners, the other without. Yes, the risk was greater (I was CHADS2) with, but the overall risk was something I could live with given my lifestyle, which included motorsports.
Also, the scoring system has arguably some severe issues by limiting the number of factors considered.
So, someone sedentary and overweight, with a family history of strokes, in permanent afib, can have exactly the same score as someone someone fit with a normal bmi, no family history of strokes and no afib episodes for the past five years since their ablation!
It's no wonder that some doctors, such as Rod Passman, are questioning this one size (one score) fits all approach.
Like you say, talk to your doctor (or doctors), do you research and come up with the decision that is right for you.
I too would go with your GPs advice. Personally I would want to take them all the time as you might be having short asymptomatic episodes as well and I wouldn’t want to take the risk.
Are you experiencing any problems with Apixaban ? If not I would continue to take them until after you have seen NHS cardiology if they are going to be looking after you going forwards. We are in not dissimilar situations . I have had two episodes of lone AF with distinguishable triggers two and a half years apart . I really didn’t want to take an AC or any other drug for that matter . I had to go straight to hospital with the second episode not because of the 175bpm heart rate but so I could be anti coagulated . Everyone especially the EP leaned on me very hard to take an AC and I thought, she is the expert undoubtedly wanting to do her best for me so I should follow her advice . It also reduced the worry of what I would do if I had an episode away from home, and if it happened at home I have been given flecainide to take as a pip and told not to come in for 24 hours unless there was a problem . When I saw the EP for my follow up appointment first thing she asked me was if I was taking the AC. I don’t have any co morbidities , a score of 2 aged 67. You are only just on the other side of gaining your second point aged 62. It’s up to you of course but I take Edoxaban in the morning and the only possible side effect I have noticed is a bit of an itchy back but I can’t be certain it’s the Edoxaban . Meanwhile I am doing every lifestyle thing I can to avoid or delay further episodes of AF . You have to be anti coagulated to be cardioverted should that become necessary so just seems like the sensible way to go and I want to keep my EP onside. I refused bisoprolol having had an appalling time with only a few tablets, normal resting heart rate of 58/60 and she accepted my logic on that one . Good luck whatever you decide
Thanks everyone. It really helps to come to a decision reading all the different views. I am going to stick with the apixaban. I seem to be tolerating it well, and can’t tell that I’m on it so far. And as many people have said, a stroke can’t so easily be undone.
I am interested if anyone has had a problem with bleeding and what they did? Also, is there some kind of electronic card that I can put on my phone in case of emergency? I have got the cardboard one but can’t see me taking that everywhere with me reliably.
As you say the Apixaban packet has an "Emergency card" to keep in your wallet/purse. However I also have a medical bracelet that I wear on my left wrist so that if I'm in a car accident or similar, the paramedics will know I'm on Apixaban immediately.
I managed to split my finger in a door jam last year, it was bleeding profusely but the nurse in the minor injuries unit dressed it as normal and it healed well.
I wouldn't recommend skiing or motor cycle racing but on a day to day basis I don't notice any effects.
Of course, you should inform your dentist before any treatment and for many medical procedures you may need to pause it for a while.
If my husband hadn't been on anticoagulant his recent stroke would have been much worse. It has been a horrible few weeks as it is but could have been worse.
My most recent pacemaker interrogation confirmed again that I have a few albeit very short bursts of AF which I am not be aware of - at night or masked by ectopics.
It reinforced my decision to accept Edoxaban as a daily medication and not to even think of the PIP method for the rare PAF attacks I have suffered.
hello, I also have paroxysmal AF with Flecanide as a PIP. I am female aged 63. My GP said I didn’t need AC but cardiologist said once I was 65 my CHAD score at 2 ( one for being female and one for age ) would mean I would have to start them
I was told that I could come off rivaroxaban following my ablation for atrial flutter in 2019, but within a week of coming off all tablets, I had my first episode of AF and was then told that I'd need to go back on it and remain on it for life. My CHADS score was higher, I imagine, than yours owing to my being male and 67. For over a year after that, I was AF free and on no medication except the rivaroxaban; sadly, since then ectopic beats and AF have encroached on my life and increasingly so, with my third episode yesterday.
That said, the cardiologist you saw could yet well prove to be the same you will see eventually on the NHS. My course of action would be to email his secretary and to ask him to write to your GP to give and justify his recommendations. My own GP always followed any specialist's recommendation for me, whether private or NHS.
I've has PAF for around 6-7;years although nothing much in last few years, taking 50 mg flecainide a day + ccb diltiazem. CHADS score was 1. cardiologist said no need for thinners so never taken them.
Much wise advice. As it was put to me when I decided arbitrarily to stop taking. It's your choice, your body, your risk. But take a walk past the stroke ward on your way out. Result you don't want a stroke and neither do I.
The ? is do you know before you are going into AF? The risk of AF is also a pending risk for stroke.
I can't pill in pocket my PRADAZA 110mg twice a day as I'm diagnosed with rapid persistent H/R and AF. But I am now controlled H/R with CCB Calcium Channel Blocker Diltiazem 120mg AM and 2.5 BB Bisoprolol PM.
Of course some Drs would say not to take Apix..... daily.
Is it Russian Roulette when your infrequent AF episodes are rare.
Side Effects of Apix..... will affect you when you take it daily.
You are lucky to have the choice.
The Specialist would guide me. At 65 years you will have a cont of 2. I would call it 2 now as 1 for female and 1 for AF.
I had a stroke due to thyroid cancer undiagnosed. Caused by AF thyroid problem.
My stroke with no meds was LIGHT although I awoke with 'sore head' at 2am. I could walk but a left frontal clot caused difficult speaking, holding items, dropped face and swallowing problems. So within 3 mths I could sing soprano, not drop things and have facial exercises and speech tongue twisters.
But stroke could present itself still on anticoagulants!
Your choice.
I'm trying to give you information so you can make an informed decision.
But I took a risk after thyroidectomy - declined Radio Active Iodine. Declined to be in Suppression with TSH. Low risk I decided totrust that my surgeon took out all papillary cancer. He also took 12 right side lymphs where 2 were infected.
2 years after I did this the above action is now a choice for all low risk patients.
I made HISTORY.
I've talked to others in your position and it often comes down to their confidence vs anxiety situation.
I have been told to stay on it as much safer than having a stroke as although you say you only have paf afib you don’t know what is going on sometimes inside (my layman’s term)
I had a very nasty fall and had to be rushed to hospital with a brain haemorrhage, but even though I was on Apixaban no problem as they gave me the reversal drug then restarted the apixabsn 3 weeks later . No problem
Hi Sixtyslidogirl , before my P-AF episodes progressed to be more time in AF than out of it, at the start of my AF journey I was only aware of the odd symptomatic episode a few times a year.
On checking my pulse occasionally I was shocked to find I was also getting short asymptomatic runs of P-AF . When I bought a Kardia I was able to confirm these short runs of P-AF
I thought because my P-AF episodes had such pronounced and recognisable symptoms that all episodes would be the same, they may not be .
So I would say to anyone, don't assume that you are aware of all episodes of AF and be prepared with anticoagulants if it have been suggested for you.
Just to add to the mix here, I had a stroke in December 2019. Subsequent investigations revealed I had Afib that I didn't know as it's rythm not rate. I was put on Edoxaban as a matter of course. I've never suffered any excess bleeding and have had two tooth extractions with no issue. Take a pill or have a stroke? That's something that you'll never know but hope for the best but prepare for the worst comes to mind..
Of course this study will be of limited value to your current choices, nor mine.
However, just to give an alternative point of view, I have chosen not to take Apixaban because in 2017 I suffered unexplained chronic bilateral subdural haematomas, which, if I had been anticoagulated at that time, could well have been fatal. With no comorbidities, and lessening AF (see my Bio), I fear a repeat brain bleed more than a stroke.
Hi thereI'm a 62 year old guy who has had PAF for many years. I was diagnosed in 2009.
I have been on rivaroxaban since about 2012 which is also a so called blood thinner. It is to prevent strokes and I am glad to be on it because as you know AF can happen anytime and even can go un noticed so for me I'm glad to be on it long term. I know some have problems with the different meds and have to switch to other types but for now don't be surprised if you are kept on it.
Follow your GPs advice.
I am also on bisoprolol 1.25mg which controls my heart rate.
I would suggest writing down all the questions you have for the cardiologist so when you do see one you will get all the answers you need for peace of mind.
Unfortunately it is a post code lottery for getting an appointment with a cardiologist and going to A&E is not an easy option because of the strain the NHS is under and the waiting times going through the roof.
Having said that if you do feel unwell then don't be afraid to ask for help.
If you are having no problems then it would be better to stay on it. I was very reluctant to go on AC and my cardiologist obviously was following the updated guidlines from the European Cardiology Society which is that if the 2 points are for being female and over 65 ie no comorbities that anticoagulation is optional. Then I had TIA - very subtle and the scan showed no damage . The TIA occurred 6 months after my previous afib episode. That put up my score to 3 so I started on Apixaban.
Cool username, probably the "coolest" on the forum. 🙂
I have just had what is probably my 2nd or 3rd episode of AF in 3 years. I went back into normal Rhythm after about 19 hours and have remained there.
Before addressing the anticoagulant question, may I ask how you are monitoring whether you are in afib ? Afib can be silent and only certain way to determine is with a holter montior or other medical device worn for a continuous period. Continuous being the key.
Thanks for the name compliment! I have got a frontier X chest strap that I can wear continuously. I don’t wear it 24/7, but I do wear it during any significant activity, the night after any activity and when I feel a bit skippy. So my cardiologist has reviewed the week running up to my episode and the week after and said all normal apart from a couple of ectopics. So far I have noticed the episodes that I have had. One outcome of the review so far was that if I am feeling ok, I probably am.
Not familiar with the Frontier X, but if the cardiologist trusts it, that's good.
Admittedly, I am pro medical device for heart rate monitoring. Also a (former) runner, though not at your level (3-4 miles a day x5 days) had no idea I had afib until I wore a Zio patch for 2 weeks as a result of a near fainting episode. No breathlessness, feeling heart racing, fatigue, etc. Zio patch indicated I was in afib for 8hrs over the 2 week period with heart rate with short intermittent beats of 140plus, even during sleeping. Paroxysmal afib went to persistent within 4 months. Now controlled with Metoprolol. Short walks and stretching new exercise regiment.
Hopefully your results will differ. Best to you in managing your health.
Hi there. I see you’ve decided to stick with the Apixaban. Always a lot of debate on this one which I follow with interest. NICE guidelines say no ACs with a CHADS score of 1. This is because the risk of a serious bleed (inc brain haemorrhage) is greater than the risk of a stroke at this level. Those are the stats and you follow the science. However, it’s always a matter of weighing up your whole picture. I’m CHADS 1 as well by dint of being female. But I’m under 60 and with only one thirty second run of AFib picked up on iwatch 6 months ago. I also found myself intolerant of the ACs. My EP was prepared to approve ACs as a PIP in my case, provided I continue to monitor with my iwatch for zero further events. My GP was less keen. However, if I were in your shoes (or should I say when), north of 60, repeat episodes and with some lasting 19 hours, then my decision would be (will be) to take them for sure. We each need to do due diligence with researching the pros and cons and decide based on our own personal circumstances, not just focussing on the CHADS score. I think your decision is a sound one. Wishing you all the best.
I too have PAF and am well controlled and had one episode last year. I was told by both an NHS and a private cardiologist/EP that although my CHADS Vasc score was also 1 ( also for being female) that I don’t need an anticoagulant, not even as a PIP, until I’m 65 at least and then it will be reviewed.
Apixaban has a half life of 12 hours. So after 12 hours, its effect is 50% of what it was at max. That's why one takes it twice a day. The objective is to prevent clots, so if you don't take it, by the time you need it (i.e when there is a clot which has caused a stroke) it's too late
I had the same dilemma but having discussed this with a highly respected and top EP it was recommended to stay on apixaban indefinitely. His reasoning? "You can be in afib and not know", that was good enough for me. My brother didn't know he had afib and that's why he had a stroke. I would stick with it.
I fought my EP for years about taking an anti - coagulant and all he would say when I refused was OK, he knew the risk's I didn't. We all know that stress and worry can cause episodes of afib and when that happens we say "maybe I should have listened to the Dr., I finally gave in and am now on apixaban with no problems and when I go into afib I don't stress out as much. The only caution in taking it is if you have a history of falling and hitting your head, although just a couple of months I hit my head so hard I almost knocked myself out then said to myself " what did you just do", now I had to go to the ER and have a cat scan of head and numerous other tests and all came out negative. I think all of the concerns regarding anti-coagulants and bleeds is to make us more aware to go out of our way to avoid it from happening. The main reason I gave in though is I'm a chicken and playing Russian roulette with my life was not worth it. Have a Wonderful Day.
It seems like many of the comments here are from the UK or Canada. My take on the AC is different than what I have been reading here. It seems to me a lot of people on this forum have the false sense of security that if they stay on a blood thinner they will not endure a stroke and have stacked the deck in their favor. No so, let me explain. So lets talk about strokes. There are 2 kinds. Ischemic and Hemorrhagic. Ischemic strokes are due to a clot that forms and blocks blood flow and therefore the cells in the area of the stroke begin to die. The Hemorrhagic stroke is from bleeding. A blood vessel ruptures and bleeds within the brain and therefore the blood supply doesn't get to the cells and the cells die. Factor in that of the two different types of stroke, Ischemic stroke accounts for about 87% of all strokes and the remaining 13% are hemorrhagic. When someone is in Afib, they are more prone ischemic strokes. Of Ischemic strokes there are two types. One where a blood clot (thrombus) forms in the arteries that supply blood to the brain, and is called a Thrombotic stroke and one where there is a a wayward blood clot or debris that forms elsewhere and travels in the blood vessels to the brain and is called an embolic stroke. Embolic strokes usually occur in someone with heart disease or after surgery. About 15% of Embolic strokes are due to Afib, because you are not pumping blood efficiently and the blood pools or sits in the upper chambers of the heart (the atria) rather than being pumped. So a clot can form within the heart and then break off and travel to the brain. Of the hemorrhagic strokes, there is one where the bleeding occurs within the blood vessel itself, called an Intracerebral Hemorrhagic Stroke and one where the bleeding occurs between the blood vessel and the subarachnoid space (the space between the brain and the membranes that cover the brain) called a Subarachnoid Hemorrhagic Stroke. You have heard of an aneurism, this is where there is a weakening of the blood vessel wall and as pressure builds, the wall of the vessel balloons and can eventually rupture. So why is it then that one hears even if the Afib is corrected, either by anti-arrythmics or surgery, that the risk of stroke posed by Afib doesn’t go away. Well I would say because it can come back and you just don’t know when. Also because you don’t always know when you are in Afib and one is not always monitoring themselves every second of every day. In my opinion, if someone does not have any other risk factors, such as heart disease, diabetes, atherosclerosis, arteriosclerosis, etc., then IF you can get the Afib under control (everyone is different in how they determine this), you then have reduced your risk of stroke substantially and to stay on blood thinners for life would be adding to your risk of stroke, not further reducing your risk. This is because blood thinners themselves carry the risk of hemorrhagic stroke long term. It’s taking a drug that has the risk of causing a stroke, in addition to bleeding in other organs, so you don’t get a stroke. Think about that. This is my opinion of course. It’s imperative to ask your doctor questions and have him or her explain to you why they want you to do A or B. As you can see this is a very individual decision because we are all individuals and we all have other risk factors that need to be considered over and above what our CHAD score is. There really isn’t a one size fits all program. The way forward is to educate yourself and be your own advocate. Don’t simply accept that because one person tells you something it’s gospel. Not everyone has all the answers. The more information you gather, the more informed your decision will be.
It never ceases to amaze me haw different and random the medical response to AF is. I have lived with PAF for over 10 years and as my stroke risk score is low I have never been on regular anticoag medication except in advance of my ablation operations. I manage my condition using a pill in the pocket approach using flecanide. However I think it is essential you don't change your medication without a proper medical discussion with someone who understands your condition.
Thanks for your response Locksy1. Having reviewed my traces and spoken to me, my cardiologist has now been clear in writing with me and my GP that I should stop the apixaban 3 weeks after the episode given that my heart has remained in normal rhythm. I have also read the NICE guidance which is similarly clear. So having dithered, I am going to stop it as directed. The research underpinning the guidance is also reassuring. Also, I have been having dizzy spells which I think must be apixaban related so I won’t be sorry to see the back of those.
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