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Flecainide: Has anyone taken flecainide... - Atrial Fibrillati...
Has anyone taken flecainide for many years and had it control afib for all those years? I have taken 100 mg 2x a day for the last year and have not had one incident. I'm about to forget I have afib, but I have started wondering because I understand afib is progressive.
Before that I took 50 mg 2x a day and started getting breakthroughs. Started 100 mg for a short time and then went off because I wanted to try using it as a "pill in the pocket." That didn't work - when I had three hours-long episodes with heart rate up to 160 in three days, I went back on!
But now I'm wondering if I am too complacent, thinking I never have to worry again.
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HotGuacamole
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Yes, I have read - on many occasions on this forum and with other resources - that AF is always progressive, however, from my personal perspect I feel that is alarmist ............. probably more true to say, that in some cases, with some people, if the AF isn't identified and treatment started very, very quickly .... maybe as in my case in a matter of hours then it can be progressive. But being progressive is not a given !
My AF these days hardly troubles me yes I have blood pressure issues, but my HR s pretty good at around low 70's. A full blown, clearly identified AF event, maybe only once in a while, say 4 to 5 years ............ by far and away now, and much more troublesome and alarming is a recent diagnosis of COPD.
I have been medically approved for the use of Flecainide however, at this stage my AF is so well controlled with beta blockers I have never ever had to resort to using it.
I had exactly your experience and had 11 years on 200mgs Flec with no problem. Over the last year, AF is breaking through again. If it works don't mess with it.
maybe when you get a chance add a few lines about your history on your Bio so that others similar can share their experience. I was 35 when first diagnosed and only got AF once every 5 years until a few years back. I'm now 67 and have been on Flecanide for about a year with only one AF episode since starting. Many here have been on it for years. Clearly age has something to do with it as i was on no drugs for first 31 years and got only 5 episodes during that time. Over the last 3 years another 4 episodes and see how things go. I am very proactive with good med diet, daily exercise
100mg twice a day kept my AF pretty much at bay (an episode every couple of years that converted easily in an hour or so with extra 200mg Flec - I am 6' 4" and 15 stones) for 10 years - 2008 to 2017 inclusive. Then in the first half of 2018 I had one episode per month that the extra 200mg Flec was struggling to convert inside of 5 or 6 hours so I had my first ablation in Aug 2018. Some breakthrough so had second more comprehensive ablation in Jan 2023 since which time no AF. I still take 100mg Flec twice per day. I know I really ought to try and quit the Flec but quite frankly I'm reluctant to on the basis that I still have a few short (5 to 20 seconds) episodes of atrial tachycardia per week and also that if I quit the Flec the AF might return after which Flec might not work as well again.
150mg Flecainide worked for me for 5 years before I started getting some breakthrough AF episodes. I tried a higher dose but started getting side effects (peripheral neuropathy) so had an ablation. I've now been AF and medication free for 2.5 years. One thing I suspect Flecainide has left me with is persistent tinnitus. It started soon after I started Flecainide and has not gone, even though I've stopped taking it.
Probably just the slow progression of the condition as I've got older (now 66). I initially took Flecainide as PIP for a number of years and it reverted my occasional Paroxysmal AF episodes within a few hours. But over a number of years the disruptive episodes got closer and closer together. When they reached 1 a month my cardiologist put me on Flecainide 3x50mg/day which stopped all episodes for several years. Then I had some breakthrough AF episodes so tried dose increase to 4x50mg, but possible side effects (numb feet and tingling fingers) became more noticeable, so I had an ablation and stopped taking flecainide a few months later (after the blanking period).
Relax, avoid caffeine and too much salt and stay hydrated (stress, dehydration, too much salt and caffeine were my triggers). Keep fit and active. Keep weight down.
I lost about a stone. Now 13st 2lbs with height of 6'2" so not too bad a BMI. As an electrical engineer I've a theory that my AF occurs when electrical pulses find new pathways in the heart allowing rogue signals to propagate more easily. High salt (sodium) and low hydration increases electrical conductivity making "short circuits" more likely. Flecainide is a sodium channel blocker that reduces conductivity.
It has worked for me for a few years and I now take 50mg and 100mg but as I developed chronic fatigue along with the PAF after a virus, I am not able to be very active and am concerned about having to get another covid jab later today as when I actually tested positive for covid over two years ago, I felt no different from usual except that it might have brought on my last AF episode about the time I must have been infected, ended with an extra 100mg as a PIP, thus not exceeding the maximum daily dose of 300mg. I am 81 and fortunately my husband is still fit and is able to do much of the stuff I am no longer able to do.
I took Flecainide for 12 years, the last 10 at 150 mg x 2 a day, the first 2 years starting at 50mg x 2 a day, rising to the dose for the last 10 years. Episodes of AF were at the most none to two episodes of the -minute duration per year. After 21 years of AF, and 12 of Flecainide, I was found to be in persistent AF, though asymptomatic AF. Which is now been deemed to be permanent asymptomatic AF. I take only my anticoagulant because of it, Warfarin being my choice.
I was on it for several years then as af episodes increased the cardiologist said it had stopped working. Tried a few things but now on Amiodarone which seems to suit until ablation is considered.
I have a similar case to yours. My Flecainide dose was increased from 100 to 200mg per day last March (after episodes every week or so for up to 24hrs) and I haven’t had a single episode since. Like you I am wondering how long this might last and if being on Flecainide for a long time is sensible. Views on this seem to vary considerably from ‘have an ablation and get off this powerful drug asap’ to ‘leave well alone if Flec is working’.
I too would be interested in the experiences of others…..
Well I am actually not sure that anything else has changed since starting the Flecainide. I eat healthily most of the time (80/20 rule) and exercise regularly, alcohol consumption is low to moderate so I don’t know what else could have made the AF episodes stop.
The only side effect I seem to have is ongoing constipation which apparently is not uncommon. Actually seeing the doc about that tomorrow as I don’t want to be putting this down to medication and dismissing the fact that something else might be causing it.
I originally started on beta blockers but they caused sudden weight gain (which I really struggle to lose again 😡) fatigue!
I had 2 ablations in 2019 but 1-2 yrs later back on flecainide with no NSR till cardioverted. Upped from 100-200 flecainide a dsy and all going well. Incidents of AF were few and resolved with 200 Flec to restore rythmn. However, like you…I wondered how long it would last so opted for another ablation last year. Weaned myself off flecainide and AF came back with vengeance and very fast heart rate 160/170bpm. Bisoprolol has now reduced it but my life has changed.
Now awaiting discussion with cardiologist in next fortnight.
Should I go for another ablation (final one)
Change bisoprolol and flecainide to other meds.
Accept my AF and concentrate on rate.
Like me, only you can decide. There’s no one fit for all with this curse.
I’m struggling with everyday tasks. My husband takes up the slack.
Tried to get back into my gardening yesterday but alas chest pain and breathlessness stopped me in my tracks. Should we push ourselves ? We can’t just give up.
It’s scary when all the symptoms could be meds? AF? Or there’s always the worry that Heart attack imminent?
I wish I had stuck with my 100 twice a day but always at back of mind that it will progress and NHS year long wait for ablation can be deciding factor.
Maybe you could carry on and hope for best. If AF acts up, wait for ablation, whilst concentrating on rate control. Who knows you might get used to it and forego ablation.
We need to think positively, hard I know and tell ourselves we do have choices.
I wish you well in whatever you decide. One thing I’ve learned on this website is we all have many different coping mechanisms.
I had 2 cryoballoon procedures. 3rd ablation was radio frequency.
I’ve also had 3 cardioversions not counting the ones after ablations.
I wouldn’t say I’ve done much other than above. Recently added magnesium to my meds but not sure it’s helped. My AF or tachycardia is hard to guage now. In/out and fast compared to my old 60bpm
I have however given up much….
Alcohol, spicy foods, fizzy drinks, anything with additives, smoked salmon, salty food, some Chinese food with MSG, Heavy meals…..tight clothing!! and Stress!
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