Flecanide - yeh or nah ?: This Flecanide... - AF Association

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Flecanide - yeh or nah ?

This Flecanide malarkey really worries me reading the posts on here.

I`m on it 100 mg twice daily. Since my CV (nearly 5 weeks ago) I`m still in NSR. There are no side effects from it (not that I`m aware of) - it seems to be working.

Flecanide seems to either be a good guy or a bad guy. Some say it triggers afib and others use it as a PIP to help afib. Some take it all the time to help their afib.

I`m confused !

Interested to hear others take about it ? Worked for you or a big no no ?

Best,

Paul

Edit - I wrote 'some say it triggers afib'. Worded wrong - should read some people have reduced episodes of afib when they stop taking Flecanide.

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I have been taking it for the last year or so at 300 mg per day. Keeps my heart in rhythm. I do have side effects from it so happy to have cut down to 50 mg x2 each day. Now stopping all together after two ablations. Keeping fingers crossed.

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bigking What side effects do you get?

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Drounding - I can`t speak for BK but there is one little side effect it may have. We`ll all men together here (look the other way ladies) and it`s nothing major - however there is a slight effect IMO.

Best,

Paul

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A couple actually. Drowsiness mostly, but I have also experienced hair thinning (could be from any of the heart medicines), but also an increase in a previous problem with neuropathy (could also be any of the medicines) and of course the male problem that seems to occur more often than wanted.

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Many years ago before the advent of gabapentin et al for neuropathic pain. We used to use flecainide for nerve pain. So I can see how it might have an effect on neuropathy ( good or bad)

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You can guess my sex (gender, cisgender) by my name - i was on flec for a long time, what is this side effect you allude to?

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Great BK - sounds like your ablations are working. Long may it continue ;-)

Best,

Paul

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I was initially on Flec 50mg as a PIP, which worked very well for quite a few years. I also took, and still take, 5mg Bisoprolol am daily. Later my episodes became more frequent again and I needed to take 100mg as a PIP, sometimes more than once in a day. I was then prescribed 100mg am and pm daily which has almost stopped the episodes completely again.

If I do get an episode now then I take another 100mg if not within about 6 hours of an earlier regular dose and I will also take another 5mg Bisoprolol at the same time if not within about 8 hours of an earlier dose. It works for me but everyone's different.

i did seem to find that when I was needing to take more regular Flec as PIP that I would seem to go into AFib or AF flutter very easily even just a short while after taking it. My cardiologist advised me to also take additional Bisoprolol if long enough after my morning dose which helped a lot.

On occasional trips to A&E they also gave me up to 7.5mg additional Bisoprolol on occasions if my early daily dose was a quite a few hours earlier. Particularly if I had AF Flutter.

I feel much better now that my medications and my Afib are controlled again.

Flecainide has been great and works very well for me.

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Same here Drounding - it seems to working for me. At the moment anyway - still I`m not counting my chickens just yet !

Best,

Paul

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I have a lot of trust in flecainide. Currently I only take is as needed but in the past I took 100mg twice daily. It has worked well for me both ways and I too didnt notice any side effects. If my a fib became more bothersome, I would b at peace taking it regularly again. Im 66 yr old, so far no ablations or cardioversions, last a fib over a year ago. Hope my luck continues but realize there are no guarantees in this game.

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Hoski wrote

.....so far no ablations or cardioversions, last a fib over a year ago......

Spot on Hoski. Life style changes I`ll take a guess at ?

Hoski also wrote

.....Hope my luck continues but realize there are no guarantees in this game.....

For sure. Maybe this is part of the reason afibbers suffer from anxiety. You are always on edge in case it returns. Par for the course I guess.

Best,

Paul

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Yes I made moderate lifestyle changes but I think the biggest help was being able to retire from a meaningful but stressful 45 years of nursing profession.

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I have been taking Flecainide for nearly 30 years with no identifiable side effects that I am aware of.

Despite having had 7 ablations my EP wants me to continue taking it as right now (hope it lasts) my heart rhythm is the best it has been since my first diagnosis all those years ago.

Pete

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Nice one Pete ;-)

Best,

Paul

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I've been taking 2x100mg Flecainide for 5 years and have had no AF in that time. The only side effect I have noticed is that I get occasional, short runs (few minutes) of AFlutter which my EP isn't worried about. I also take Nebivolol. Flecainide has, so far, been a friend to me but I know that it doesn't suit many people.

My cardiologist checks my ECG every six months and tells me that it hasn't changed at all in the 5 years. Really hoping I'm like Pete and will get the rest of my life without ablation.

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Thanks for replying Finvola - I appreciate that. Flecainide really does seem to be a success story for many. I`ll keep a positive out look and hope it continues to work for me.

Best,

Paul

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I had awful side effects from taking Flecainide daily, which my EP wanted me to do several months ago, but that only lasted a couple of day. I only take it as needed now, PIP. I have had the experience of it actually making an episode worse. Triggering AF is listed as a side effect and it has happened with me a couple of times.

There really is no 'one-size-fits-all' approach with the medications. People have different reactions to them. I don't really understand why some docs expect that everyone will respond in exactly the same way to any given medication.

After the various discussions with docs, other folks with AF, and my own research over the past many months, what works best for me is to just focus on how the medication is working for me at any given time, trust the experience and my own intuition, and adjust accordingly, in consultation with docs.

It's an interesting skill I feel I've been pushed to develop in dealing with AF; educating myself, yet not overdoing it or being swayed too much by other people's experiences.

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Hi Paul, I think (from some limited research) that Flecainide works best and is safest when you have Lone PAF i.e. without other heart issues/comorbidities and are relatively young i.e. <75. I am 65 and have taken 200mgs/day for 5 years and in that time have had no episodes and no regretful side effects - if the ladies are still looking the other way then a bit of what you refer to. I am also comforted by the thought that this drug is one of the oldest on the AF block and therefore less likely to produce surprise problems later. Whether my fortune is purely down to Flec or the multitude of other lifestyle changes I have made is a different matter but there are two indicators that Flec still plays the major role 1) my cardiologist doesn't want me to stop 2) nor do I right now.

PS I have always thought that one of the main benefits of going the drug route (rather than ablation) and once stable not rocking the boat is that you buy time for the medics to improve ablation techniques and hopefully less invasive corrective procedures. Even small improvements can have a big effect on your post ablation QOL.

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Hi Secondtry.

You wrote

.........PS I have always thought that one of the main benefits of going the drug route (rather than ablation) and once stable not rocking the boat is that you buy time for the medics to improve ablation techniques and hopefully less invasive corrective procedures. Even small improvements can have a big effect on your post ablation QOL........

I`m with you all the way on this. In a few years the procedure will have improved and new way`s of carrying out an ablation will be an option for us all IMO. The last 5 years have seen improvements and the next 5 will see even more. This is why I want to wait a year or two before I consider the ablation route.

In fact it wouldn`t surprise me if ablations, as we know them today, are a thing of the past in 5 years. Watch this space ;-)

Enjoy your day ;-)

Best,

Paul

PS - ty Nella for your answer too. You raise some good points and I agree with your outlook about coping with afib.

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My Doc. Said the same thing. There are rapid improvements in the procedure and the longer you can hold off the better. Take 75 mg twice a day. Some fatigue and a headache if I am tired. No a fib for 3 years. In the U.S. there is black box warning for flecainide and the Doc. recommends a low dose rate reducer to prevent side effects.

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One may buy time with waiting for better ablation techniques but you have to balance that with the side effects of various medications and the danger of bleeds when on anticoagulants , aspirin, etc. Flecainide may be better with Lone AFib which I have, but I couldn't tolerate it or beta blockers , and therefore chose the ablation route. I certainly don't regret it.

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Sounds a good decision to me, keep well.

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Thanks second try hope you keep well too!

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You just have to 'suck it and see'.

For some people it's great, others. not so.

And even with one person, it can suit for a while then later can cause problems.

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Wendy wrote

.....For some people it's great, others. not so.....

Yep ! It`s working for me at the moment - I hope it continues. Time will tell ;-)

Best,

Paul

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Been on it 15 months and in that time very few episodes and even they have been short! Need to stick to lifestyle changes as well but for me it's working well !

Andy

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It was my savior.......

Sue

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Two more yes votes from Sue and Andy. If only Brexit votes were so simple ;-) If I don`t like the answers I`m going to post the question again heheh.

Best,

Paul

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That made me laugh Paul.

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I've been taking flecainide since 2011 with only one episode since starting it. In the last 2 or 3 years my dose has been reduced ( with a nudge from me) to 50mg bd. I was getting odd episodes of tachy for no reaso) I occasionally get an off day with fatigue and frequent peeing. Have always assumed this is a day when I would have gone into AF without my best pal flec.

Have often wondered why I was put on 100mg after a week on 50mg . Again thinking back . I did present with a rate of 180 ish and IV amiodarone failed on both occasions pre flecainide. Cardioversion lasted a month pre flec, so maybe that was tbe reason

Over 8 years later and (older) a very happy bunny.

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......Over 8 years later and (older) a very happy bunny......

:-)

Best,

Paul

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Hi there

I ditched flecenaide after just 5 days when I developed numbness in thighs.. Also it just didn’t seem to control my A-fib, so the side effects were not acceptable to me. I am Afib free now, two years after the last of my 3 ablations. Mind you, I have changed my diet completely to plant based, have gradually increased my activity so that I can do a 9K walk in the hills and I do my best to avoid stressful situations ( not easy when you are a stress head).

We are all so very different.

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In my experiance I thought it was a wonder drug for 4 months, unfortunately it then then triggered a bad bout of Aflutter which kept me in hospital for 5 days and a cardioversion. There is no correct answer as we are all different, best do what the Doc advises as only he knows the details of your condition. Yes the Doc was wrong with me but this error did bring forward my ablation just 6 weeks after they knew Flecainide was not working.

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Ditto, was in exactly the same situation. Switched to the more potent Tikosyn before ablation. Now in stable mode and off all meds.

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I haven't read all the responses, but i presume someone has recommended taking a magnesium supplement. For me that warded off the side effects pretty much 100%.

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Jonathan can you advise how much magnesium you take daily pls. I only take 75mg twice a day of triple calm magnesium from natural rhythm and wondered if I should take more.

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I use Mag Citrate and take 100mg per day. The recommended dose according to the bottle is 300mg a day, so I am well under that. If I am not feeling well i will take 200mg, but that is very seldom. I eat a well balanced diet as well.

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That’s interesting. I have also completely changed my diet as well to a high fibre one. Been teetotal for last nine months and don’t take caffeine. Instead of coffee I drink rooibos tea which has five times more antioxidants than green tea. Lifestyle changes do make a difference as well as magnesium supplements I think. Thanks for the info

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edition.cnn.com/videos/busi...

I am South African so have always drunk Rooibos.

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Been on Flecanide for couple of years before my second successful ablation February of this year. I found when it worked (99%) it worked really well. Few times I needed hospital treatment with afib episode my heart rate was much slower and easier for them to get back into NSR. For me it’s worked well and only this week in off it completely with no ill effects. Years back I was on amiodarone whicb caused terrible problems and messed up my thyroid good and proper! I’d take flecanide over amiodarone anytime!

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Hi, I've been taking 2x50mg flecainide for the past 4 years with no noticeable side effects. Though I have now dropped to 1x50mg a day which is so far, keeping the AF at bay.

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I’m on 150mg 2x a day for almost 15 years now. I still get episodes about 2x a year and get PAC’s when working out hard but not much in side effects. No ‘male’ issues. The times I cut it back, I had more episodes for sure.

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Hello,I’ve had two ablations and unfortunately still get the odd episode of AF, so I take 2 100mg flexanide tablets each time. It normally takes between an hour to two hours for me to get back into NSR. My last use was yesterday, but this was about 14 months since my previous need.

Good luck.

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I take Flec 2 x 50mg daily and it certainly has stopped the regular bouts of Afib. Before that I was using it as a PiP and it simply did not appear to work. In fact when I started on daily use it took about 5 days to settle down and "get into my system".

If people don't mind a bit more of an open discussion on the male thing.....We are all adults after all...I had issues "getting hard" when in Afib and since taking Flec have a much more "solid" and reliable performance in the bedroom. In fact these days it seems to take a lot longer for me to ejaculate...which is no bad thing. I would be very interested to hear other mens experience as Im sure its something we have all worried about and wonder if its "just us".

And finally....what a lovely group of supportive people you are!

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As it is past the 9pm watershed (UK time) I can reply, I have the same experience in that it takes longer to ejaculate.

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Have taken 150mg x2 per day for 18 months. Kept in NSR with no known side effects.

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I had been on Sotalol for 4 years, until last week. I had a PAF which went into flutter and whilst on holiday 20 months a consultant gave me flecainide as a PIP, 100mg after 30 mins from the onset of AF and then a further 100mg if that wasn't working. I guess I had to take it 8 times in total and 5 times it worked brilliantly, the other 3 episodes developed into flutter and I had to have a DC cardioversion. In March this year after another PAF, when I had my last cardioversion the Cardiologist registrar said it really was time for an Ablation, so a little reluctantly I agreed and it was scheduled for 31st May 19. Sotalol was letting my heart rate drop to as low as 39 ( averaging 48 ) so after the ablation I was taken off Sotalol and put on 100mg flecainide twice a day ( not sure if the heart rate was the main reason for the change ). Last Thursday the prescription came through so I started the flecainide and by Friday night ( after 3 doses ), 7 days after my ablation, I was in the MAU ward at the hospital with AF ( varying from 40-145 ) and spent the weekend there, fortunately 12 hours after an IV Amiodarone I went back into almost normal rhythm at 40 but settled at 59BPM after a further 2 hours and was allowed home.( did coming off the Sotalol cause the AF ) The on call Cardiologist was very reluctant to give me another DC Cardioversion as I had to have one the Friday before after the ablation. Confused by the above?, so am I , although I was told it might take three months to settle, but I do remember whist being half dosed out of my mind the cardiologist saying something along the lines he found more than hoped but the next ablation would be easier, was that for real or a nightmare. All that said flecainide has been brilliant for my for my AF but seems not so great with Flutter. It seems to be the same old story , we are all so different and as finely tuned as Lewis Hamilton's Mercedes!

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Flecinaide really seems to be up to the individual doctor as to

1. IF you take it at all.

2. Do you take it morning and night

Or

3. Do you take it only when you get an AF attack .

Honestly I think they’re all guessing as seems up to the individual.

I’ve been on Flecinaide since my 2nd CV in 2016. My first heart refused to look at Flecinaide raising to many side effects , but after he “forgot “ to my my second cardioversion I’d had enough of him and switched to another specialist, new dr pro Flecinaide and put me in them after second CV went well but had a few brief episodes where I went into and out of AF all by myself . Not wanting to be be in AF again I went with the Flecinaide and have been on it ever since. Initially no issues , no AF AAT all however after a year started getting Eptopic beats which seemed to get more frequent and stronger , often missing a beat regularly and getting a bit one back , which could go on for ages. My specialist “believed” my body was reacting to the Flecinaide , and after a few really weird heard incidences , where my eptopics went to really slow beats , them hard beats , I figured it was time to start coming off Flecinaide . Sure the eptopics are better than AF, but they were still not really nice to experience. I’ve been reducing my Flecinaide the last year by 25, then reducing by 50% ( now on 50mg morning and night) but still getting periods of Eptopics. Made the decision last month to have an Ablation (Cryo) which happened 2 weeks ago and in a month I’ll start to wein off the Flecinaide, and hopefully lose the eptopics and hopefully the AF will stay away.

Weight, diet and healthy living is something I’ve ignored, despite knowing thee things army helpful for avoiding AF, but have made the decision I want to be normal again .

Good luck in your Flecinaide decision , think it’s different for everyone

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Hi Paul, I think flecanide is best thing since sliced bread.have been on it nearly 2 years maybe more. Same as you 100 mg twice a day and a 50mg if I have a turn. I was a bit iffy at first but fine now. Was in and out of hospital all the while before starting it with my AF, haven't been anywhere near one in almost that two years. I have changed my diet I don't eat red meat and I don't drink but that was purely extra for healthier lifestyle. It is like all tablets they either suit you or they don't. You tend to hear more bad reviews than good. Have a good day hope sun comes out soon. X

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I have come off other than pip, had Cryo ablation in January at Papworth. I personally think it increased the number of episodes I had. Saying that the AF has retuned about twice a week. I’m 39 with a 4 and 1 year old so finding this all very tough. I was very sporty with a resting heart rate of 37bpm, following the ablation it’s around 42. I found it took a long time to come off the flecanide.

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Hi Paul, I am on Flecainide 50mg twice a day with no side effects that I am aware of. It works for me having had no AF since being put on them (prior to Flecainide I had two cardio versions and a pacemaker fitted)

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Good reading:

1/ Safety of flecainide. Tamargo 2012 ncbi.nlm.nih.gov/pubmed/224...

2/ Twenty-five years in the making: flecainide is safe and effective for the management of atrial fibrillation. Aliot 2011 ncbi.nlm.nih.gov/pmc/articl...

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Glad to hear you do not have side affects from the flecainide. I had a pacemaker installed March 2019, because of afib which caused low heart rate when I converted from afib to normal heart rate. So far it has helped keep my heart in rhythm along with metoprolol. Flecainide does cause constipation that I have to manage. I have only had one short episode of afib since getting pacemaker.

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The best way to avoid these meds altogether, is to get an ablation.

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Hi everyone.

Just got back in and read the replies. Thank you all so much to taking time out of your day to post a reply.

The general consensus seems to be that Flecanicide helps many. However there are posters who have been unsuccessful taking this medication. It seems to be the first port of call for afib - much the same way as Bisoprolol is the first port of call for a beta blocker.

I guess the cynic in me would ask if it`s used so widely because it works - or because it`s cheap ? Both are now generic drugs that have been around for some time. Costs are a minimum compared to newer treatments.

Once again - thank you all for the replies. Much appreciated.

As always

Best,

Paul

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Used widely: because it works, or because it is cheap. There are other reasons, one of them being the fact that alternatives are hard to find, another, that the alternatives are risky. With betablockers there is quite a choice out there, so if you do not get on with one, you can try another. Flecainide is rather unique.

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Fair point ILowe. Like I say it`s it`s just the cynic in me I guess. I have little confidence in the pharmaceutical industry.

Have a great evening.

Best,

Paul

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I was put on Flecainide 50 2x per day over a year ago when I had my first and only two bouts with afib 220+ bpm. It did not work to control my heart rhythm, so I had an ablation about four months after those episodes. At the same time that I developed afib, I also developed crazy numbers of pvcs, which I was told would not be addressed by my ablation, as a second procedure for the ventricles would be necessary to address those beats, if they didn't resolve after the radiofrequency ablation. I have tried coming off Flec four times in the 10 months since my ablation, and although I easily got off the Metoprolol and Prilosec since that time, every time I try to get off the Flec my heart goes into crazy skipped beat rhythms -- nearly every other beat -- and it pounds so hard that it rocks me as I am sitting. They are especially bad at night and prevent me from sleeping. With my regular dose of Flecainide I feel fantastic, and have had no side effects at all of any kind. I consider my ablation a success in that my heart doesn't beat fast or go into afib any more, and no more trips to the ER or cardioversions, and now the pvcs are well controlled by the Flecainide which does work. If the Flec stops working to control the pvcs or other problems develop, I'll opt for a second ablation, but would like to delay that as long as possible to see what new treatments develop. I also take Eliquis, and consider it a blessing that this problem was discovered and controlled before it turned into a surprise stroke. I was afraid about the black box warnings that come with the drug in the US also, but man, that stuff sure does its job. I am scheduled for another 7 day monitor by the EP who did my ablation to see if it was a "success", but was told to go off Flec for 2 weeks prior. I just couldn't get it done, and after 5 days of half pill weaning at night, and no Flec during the day, went back on it so that I could feel normal. Good luck!

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Barb - check out AcQMap procedure with an ablation if you have a 2nd one. The trails in the UK have just ended and it will be interesting to see the results. If / when I have an ablation I would very much like to involve this. Worth a Google along with other new ways of treating afib.

Best,

Paul

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Flec kept me in rhythm for almost 10 years. Only side effects were tiredness and weight gain.

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Wow - 10 years is very good. If I get half of that I would be delighted - in fact one year would be a result TBH. I`m really keeping my fingers crossed about this one.

Best,

Paul

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Flecanide kept everything fine for7 years till a stress test showed evidence of a potentially dangerous rhythm so had to swop to sotolol and not sure how that will pan out as I’ve only done 2 days so far.

I’m very disappointed as I counted flecanide as my best friend! X

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What a shame Dedeottie. Hope the Sotolol works OK for you.

Was the potentially dangerous rhythm a result of Flec or there anyway (maybe they don`t know for sure) ? It`s worth knowing if it was a result of the medication - it would seem follow ups and monitoring are order of the day if so.

Best,

Paul

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Thanks Paul. The flecanide was the cause but I now have to have an angiogram to check arteries as furred arteries are one of the things that could affect the action of flecanide. The sotolol isnt workinh and unfortunately i have been back in AF since this afternoon. On advice I have increased the dose but no success yet Im afraid. X

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There certainly do not seem to be any hard and fast rules and I am bemused by the seemingly random use of medications, CV and Ablation.

Flecanide did not work for me...........

I have AF (current load 55%) resting HR of 60 (but rarely above 90bpm even in AF) and mostly unaware of AF except occasional 'slow' mornings. I was on Sotolol until I had a few fainting episodes. Then I was switched to Metropolol and Flecanide and promptly starting severe syncope episodes with blackouts caused by heart stoppages of up to 14 seconds. My local doc said STOP the Flecanide as he had other cases of problems with it. Result = switched to Bisoprol and pacemaker fitted .... no more syncope - pacemaker cuts in when HR drops below 60 (25% of the time) and I am totally unaware - so life goes on.

I guess that low heart rate is the key - why I have a pacemaker and why CV and ablation have never been mentioned - but looking at the posts I seem to be the odd one out!

Best wishes to all of you with flutter and high HR episodes.....

x

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Phew QW.

......starting severe syncope episodes with blackouts caused by heart stoppages of up to 14 seconds......

Not good - it sounds like it was great news it was spotted. Hope all goes well with the pacemaker. They are pretty good these days and it sounds like it is has been successful for you.

Best,

Paul

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