Do you find daily Flecainide stops episodes or reduces their duration?

[BigArnie]

I started almost 3 weeks ago on 2x50mg per day and then was increase about a week ago to 2 x 100mg per day. It’s been a bit of a rollercoaster including a cascade of episodes in the first week and gradually increasing acid reflux issues which I now believe are under control. The current status is that I seem to be back near to where I was before medication, at around 3 episodes in the last week, (actually that’s still a bit more frequent) but I am finding that on the higher dose, these episodes will self terminate if I lie down very quickly compared to before I.e. between 10 minutes and 2 hours, compared to between 2 and 8 hours. I am hoping for better as my body further acclimatises to the drug, but I am curious about how it works for those who find it works, if you see what I mean!?

Thanks for any inputs.

Edit: I’m also really interested to know if anyone has experienced ‘mini-episodes’ of just 1-2 minutes where (it seems to me) that if I catch the first stages of the arrhythmia and lie down, then the Flecainide seems to (sometimes) kick in and do it’s job. Again it makes me wonder if the Flecainide is actually stopping any episodes triggering at all, but simply deals with them as and when they trigger - occasionally without me even noticing?

[Buffafly]

Just a reminder - you are taking it on an empty stomach aren’t you? Works much better if taken as directed, I’ve never taken it so not sure of the full directions.

[BigArnie in reply to Buffafly]

Hi Buffafly, thanks for the comment. My cardiologist recommended to take after meals because it was causing my acid reflux to reoccur after years with no issues. I am thinking of trying again before meals now that I’m getting the acid under control, although actually my particular Flecainide tablets say they can be taken with or without food, so who knows?!

[Tako2009]

Hi Big Arnie. I take 50mg Flecainide twice daily, always on an empty stomach and as near as I can get it to 12 hours between doses. I know it took me a long time to get used to it and the dose was increased to 100mg at one time. It’s a bit trial and error to find the dose and combination of meds that work for you. At the start I was getting AF episodes maybe once every couple of weeks, now it’s more like 3 or 4 episodes per year - always at night and rarely lasting more than a couple of hours, if that. What has made the most difference for me have been lifestyle changes - I was able to retire from a very stressful job, have changed to a flexitarian diet and lost weight - I still need to take Flecainide but at the lower dose - I’m not brave enough to stop taking it all together!! I would say it does take a while (couple of months?) for your body and heart to get used to the meds and it helps if you can make some of those lifestyle changes - but I wouldn’t be without it now it has made such a difference to my life!! Liz💕💕

[BigArnie in reply to Tako2009]

Many thanks Liz, that is really useful and gives me hope I can get to your steady state! My job and lifestyle are a bit stressful, but hopefully I can also make some progress there. When you say a ‘long time’ to get used to it, can you remember how long that was? Weeks, months , years (hope not!)

[Tako2009 in reply to BigArnie]

Hmm. I would say it was 6 - 8 weeks before we got the dosage and combination of meds right for me!! This included the bright idea of trebling my Bisoprolol meds when I already have a low resting heartbeat!! I basically ground to a halt and keeled over regularly. At that time I was reliant on my Gp to help me get things stable - i never saw the cardiologist who did the diagnosis again and I didn’t find this wonderful forum until a while later.

[BigArnie in reply to Tako2009]

Gosh, scary stuff! Glad you got it sorted 😀

[Finvola]

Hello Arnie - I started Flecainide over 6 years ago after having AF and other arrhythmias in increasing frequency for about 6 years previously.

From the moment I started taking 2 x 100mg, my AF stopped - I couldn't believe how well it worked, always expecting it to come back. I have had SVT and some mild AFlutter but they were nothing compared with the AF episodes.

My EP and cardiologist both commented that 'it was well tolerated' and my cardio said I am one of the lucky ones whom it suits. Best wishes with it - I hope it is your friend too - and long may it be so.

[BigArnie in reply to Finvola]

Hi Finvola, thanks for your response. You certainly have had the experience I aspired to, but certainly didn’t get in the first week or so! Hopefully my body will continue to adapt (in a good way though ) I do seem to have got past the initial stages of daily headaches and that first week cluster of episodes, so I am keeping the faith.

[secondtry]

My Flecainide brand is 'Accord' with instructions take on an empty stomach and wait an hour before eating, never had any reflux or other problems. Might be worth swopping brands and I believe you can specify (I do) which you want. I think it was Jeanjeannie here who mentioned different manufacturer's use different fillers which themselves can cause problems.

[BigArnie in reply to secondtry]

Thank you, that is very interesting, I hadn't come across or registered that point, so will investigate further!

[tunybgur]

Hi Arnie,

I take 100mg am and 50mg pm of flec and it keeps me in sinus rhythm pretty much permanently. Regular daily flec is supposed to be a permanent fix, as opposed to a pill in the pocket which is for sudden episodes. Take it an hour before or after meals for best effect.I also take 1.25mg bisoprolol.

I used to take 2x50mg but started getting fairly frequent AF episodes after a few years of steady SR, so I believe as you get older various arrhythmias become more common.

I think stress and fairly brisk exercise were triggers for me, I also had some acid reflux but I was recommended a glass of home made Kefir every day and this very quickly sorted that out and my gut is so much better for it!

Good luck

[BigArnie in reply to tunybgur]

Thank you. Yup, stress and exercise currently doing a number on me too - the latter desirable and the former not (but was OK previously)! Will check out Kefir.

[wilsond]

Two things, firstly I was told to take on an empty stomach as taking with food can result in the drug not being absorbed fully and thus not as effective.Second,yes I get a lot of short runs ( caught on Kardia)and I was told by my consultant that he was happy enough with that as it meant as you say the flecanide is interuppting the attempts of AF ,and Flutter for me,to kick off into a full blown event.

I hope this helps and good luck xxx

[BigArnie in reply to wilsond]

Thank you. That is useful feedback from the consultant. I wish I had a fuller understanding of the processes here. I get how the para/symp nervous system and the heart electrical issues, but not totally clear about how they develop/interact to lead to Afib the condition and then trigger the episodes.

[Lilypocket]

HiMy episodes increased when I was changed to Flecainide. However their duration is shorter - 1 to 5 hours instead of 12 to 14 and much less symptomatic. I also have tiny episodes of 30 seconds occasionally. On the whole my episodes seem to be ( but not always) related to eating. It is not related to how much I eat - last week's episode was after eating an avocado with a bit of olive oil ☺️

So on the whole I'm happy with Flecainide.

Take care

[BigArnie in reply to Lilypocket]

Thanks Lilypocket, sounds better, but not perfect. Are you considering any options?

[Lilypocket in reply to BigArnie]

Well I don't know. I'm going along ok and up til now my heart has always popped back into NSR by itself. It's a rock and a hard place. My QoL is good but the condition is progressive so I have to decide when to opt for an ablation. Not too soon or not too late. In any case with Covid it's not top of my list - there are too many more urgent cases to be dealt with before my situation. I think if you don't have awful symptoms when you are in Afib you have the time to decide with your EP/ cardiologist. Are you on beta- blockers?X

[BigArnie in reply to Lilypocket]

No, the cardiologist has not recommended BBs (yet!). I am a little wary because my HR does drop quite low already from time to time (it is generally quite low anyway) and (as far as I know) have no BP issues. I'm still new enough with the condition that I'd still like to 'beat it' with some help - at least for now - from the medication. Realistically I shall have to make the ablation decision one day, I just not hope forced into it any time soon.

[Lilypocket in reply to BigArnie]

I've had it since 2012 more or less. But it doesn't ( yet) seem to have nosedived into the awful symptoms that some members have described. And reverts by itself. What has been great with Flecainide is along with Paroxysmal ( or lone) Afib I had PVCs ( premature ventricular contractions) - about a 1 - 2000 a day that I could feel and were very annoying indeed. When I changed to Flecainide they disappeared ( hurrah!!). I now have PACs that I only occasionally feel if at all. So my quality of life is much better! Beta blockers make tired and less mentally sharp but I'm doing ok but if I start having more and worse episodes I'll do something before it becomes persistent.May I ask how old you are? I'm nearly 65.

Take care x

[BigArnie in reply to Lilypocket]

I'm 59, basically fit and healthy except for Afib and been running regularly over the last 5 years at 12 - 25 miles per week. Certainly not ready to accept 'being old' just yet (!) and somehow, in my head at least, taking a couple of pills a day seems to take me less far down that path than an ablation would. (Perhaps if I was more from the plastic surgery generation it might be different!)

[Lilypocket in reply to BigArnie]

Yes I'm basically fit too. I'm tempted by an ablation but obviously on this site many people have had more than one or other problems caused by an ablation. But I get the impression it's a minority ( the people who have had successful ablations don't come on this great site except to chat to their friends). I'm waiting as each year that passes brings more advances in techniques and practitioners that have more experience for this procedure. I live in France which pioneered the procedure but it is now widespread and carried out all over the world and in some places better than France! The UK has a very good reputation. But I believe the wait is longer? No doubt someone will correct if I'm wrong 😊X

[cuore in reply to Lilypocket]

If you are in persistent AF and somewhat down the path, you area guaranteed to have more than one ablation because your heart has remodelled.

I would disagree with you that there are places better than France that do ablations, if by France you mean ablations at Haute Leveque Hospital. Furthermore, Dr. Haissaguerre ( pioneered the modern ablation technique in 1994), Dr, Jais and Dr, Hocini have engineered the building of the institute LIRYC ( Electrophysiology and Heart Modeling Institute) which brings together specialties from all over the world under one roof hopefully to find a cure for atrial and ventricular fibrillation as well as other arrhythmias. Furthermore, Dr. Jais and Dr. Hocini are more than up to date on the latest techniques.

From Wikipedia:

LIRYC[2] is a basic research, clinical and teaching centre focusing on the understanding, care and treatment of cardiac electrical diseases that lead to heart failure and sudden death.

It includes national and international doctors and researchers in cardiology, imaging and signal processing and modeling, who have overlapping interests and skills in cardiac bio-electricity.

[Lilypocket in reply to cuore]

Thanks for the reply. I live in France so I know I'm lucky. But what I meant to say ( but it came out wrong) is other countries' skills are as good as France. I was giving a thumbs up to the UK because I know a couple of people with very persistent or permanent Afib who did manage to find a solution albeit through several ablations and are still Afib free today. So although France is the pioneer and continues to be the best I think in this field many specialists have caught up in different countries all over the world in the last decade. If I remember rightly you came to France from Canada 3? times and are now Afib free? Definitely Bordeaux is the place to go for complicated conditions .How are you these days?

[cuore in reply to Lilypocket]

I absolutely agree with you that other countries are right up there with France, the UK being one of them. In fact, Dr. Hocini, herself, told me that "they" like to get the word out. In other words, they endeavour to have both clinicians and patients very knowledgeable around the world. They are always involved in trials, pushing the envelope.

I do remember you, Lilypocket. Yes, I am the Canadian three times to Haute Leveque Hospital. Dr. Jais did my third ablation after which he said I was one of the most complicated cases at the six month persistent stage (defined by first ablation), and had I not had the ablation at that time, I would never have been able to return to sinus. I am lucky to be a year and a half in sinus although I do take Propafenone. Thank you for asking. 😄

[Lilypocket in reply to cuore]

Great news and a beam of hope for those with complicated Afib problems who might want to give up. Of course I'm not talking people who have other complicated issues that overshadow the Afib for whom an ablation is not on the table. I shall definitely get my first ablation ( if I choose that path) at that hospital to give it a best shot of working.Take care.

[Ijacp]

I’ve been on 100mg twice daily for 12 months now - I still get breakthroughs (had 2 this week but have gone 3-4 weeks without) However they are much shorter than previously. Apparently the dose limit depends on your weight and 11 Stone is a cut-off. So I am on the maximum dose for my weight (under 11). It’s bearable at the minute - next step is ablation but sticking with Flec for now.

[BigArnie in reply to Ijacp]

Thank you. Interesting about the cut off. I am on the 100mg x 2 at a weight of around 13 stone, so maybe could go a bit higher on that basis. I sense I am roughly where you are, but perhaps hoping for better even from the current dose. Did you reach steady state quite quickly on this dosage or did it take a while for your body to settle down? (How long?)

[Ijacp in reply to BigArnie]

Hi - I have seen that some people take a higher static dose but wouldn’t do this without talking to your consultant. It was my GP who told me about the cut-off. I would consider taking more because of the breakthroughs and I’m only slightly under 11 stone so plan to discuss at my next consultant follow-up. I started as pill in pocket but quite quickly went to a static dose of 100mg daily and then quite quickly raised it to 200mg after that. Feel like the steady state was reached quickly also (within days I would say). I thought I tolerated it well but beginning to doubt myself! I get tinnitus and my heart rate drops quite low on an evening when I’m tired, both of which were the case before I started the Flec. I’m finding it hard to judge if the Flec has exacerbated this or not. Also think the breakthroughs are still linked to external factors some of the time, other times not. Anyway, hope it goes well for you.

[BigArnie in reply to Ijacp]

Thank you. I feel your pain and I used the term 'steady state' far too easily when I am already forgetting what it was really like before starting the daily Flec only a few weeks ago! (Fortunately "I have detailed files" - which oddly enough is a quote from one of the Terminator movies starring my alter ego )

[Hidden]

2x100. Have my life back!

[BigArnie in reply to Hidden]

I want mine back too!

[BigArnie]

Hi ectopic1, is that a steady state or are you still trying different doses/approaches?

[Hidden]

Flecainide plus 1.25 Nebivolol. Lost 1.5 stone and plenty of walking. Bingo!

[BigArnie in reply to Hidden]

Go Hylda!

[Rubyray]

I appreciate every ones comments about Flecainide. I take 100 mg in the am and 50 in the evening. When I went in to afib a couple days ago I was told to take another 50 mg extra but only to helping to stop the afib. I can only do the extra Flecainide one time per day. I hardly ever have an afib atack . I have been wearing a pacemaker for almost 2 years. It took the extra Fleainide almost 3 hours before I went to normal heart rate. I am fine today.

[BigArnie in reply to Rubyray]

Glad to hear that Rubyray. This seems a great place to find out as much as possible about Afib and Flecainide.

[Rubyray]

Hello again. I have a question for any one of you cares to answer. I have been taking Flecainide for almost 2 years and began having problems with constipation the first week I took it. Nothing I have tried corrects the problem. When the dose was increased the constipation got even worse. Anyone know a cure for that

[Hidden in reply to Rubyray]

Only wish I did Rubyray. Have tried everything.

[Buffafly in reply to Rubyray]

Movicol, maybe take regularly but not every day. I had the same trouble with Propafenone, struggled on without meds and that led to a serious bowel problem, so do get it sorted 💜

[BigArnie in reply to Rubyray]

Hi Rubyray, you might want to post a specific question on that point in case people miss it in the middle of this thread. Good luck!

[doodle68]

Hello Arnie 😊 excuse me please , I don't want to hijack your thread but can I ask did any of you who are taking Flecainide daily start taking it at home without first having had it administered in hospital ?

[BigArnie in reply to doodle68]

Hi Doodle, Of course no issues! I did not start taking it in hospital, although I had been thoroughly scanned before it was prescribed by the cardiologist.

[doodle68 in reply to BigArnie]

Thank you Arnie 😊 that is reassuring...

[Tako2009 in reply to doodle68]

Yes! Prescribed by the cardiologist and then administered/ overseen by my GP.

[doodle68 in reply to Tako2009]

Thank you so much for your reply Tako 😊 I was somewhat put off taking a first dose of Flecainide at home having never had it before when my GP said 'Don't take the first dose at a weekend in case you needed an ambulance '.

I am supposed to take it daily and intend to start when I have an episode .

I think Flecainide must have miracle powers, although I have not yet taken a dose only read the leaflet it seems to be working 😉 I have gone 3 weeks and 3 days without an episode, for the last year I have had least 1 episode every 10 days .

[BigArnie]

Got it, thanks.