Hi everyone, diagnosed PAF four months ago, was having 3-4 episodes a year which all resolved themselves within 24 hours. Was prescribed Flecainide as a pip which l used, back into sinus within 24 hours. My episodes are now 3-4 a month so my EP advised me to take a maintenance dose of 100mg a day. I've now had 5 breakthroughs in the last 3 weeks!
Is this a normal acceleration of AF or is Flecainide making it worse? In any case it's not stopping the episodes and it doesn't bring me out of them any quicker than without them. Do they just not work for some people?
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Orbitpluto
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At least in the US, Flecainide requires monitoring by ekg. Ideally you should have had an exercise stress test before starting and then a 12 lead ekg a week after starting to make sure you're tolerating it.
Have these five episodes been confirmed as atrial fibrillation by EKG?
If not, the possibility exists that they are atrial flutter, which is sometimes a side effect of Flecainide. Since it's often difficult or inconvenient to capture episodes at the doctors or hospital, a home EKG device like cardio or Apple Watch can be very useful here.
Hi Jim, thanks for your reply, AF was picked up at my local GP and then l did have the 12 lead EKG at the hospital to confirm and then another a week later after taking Flecainide for a week. They are happy to prescribe it but l don't appear to be getting any benefit from it, all that's happening is I'm getting more of them now.
Yes, afib can progress unfortunately, though it doesn’t always, but mainly it does - which shows what a difficult beast it is, as it’s different for all us.
One thing that struck me from your post, was that you don’t mention a beta blocker alongside your fleconaide. Are you taking only that?
Some people are lucky and only take fleconaide and do well just on that, but I believe a majority are given a beta blocker to take alongside, as this helps prevent flutter. I know I was told to take a beta blocker always first, but I only have flec as a PIP.
Have you told anyone about the increasing episodes? Do you have an arrhythmia nurse at your cardiology unit, as it sounds like it might be time to consider further options for you.
Hi Teresa, thanks for that, l haven't been prescribed anything other than Flecainide, I'm guessing it was because my episodes were few and far between and they never lasted more than one day. But l do have access to an arrhythmia nurse so will give him a call and see what he suggests..
I’m glad you can call an arrythmia nurse and I hope they can help you.
A beta blocker is usually taken alongside flecanaide every day, regardless of how many episodes you have or how long they last, if you’re on a maintenance dose. Some are lucky, just taking fleconaide alone, but I believe the majority also take a beta blocker too, to help prevent other arrhythmias.
I hope your arrythmia nurse has come up with further solutions for you. Do let us know how you get on & good luck.
I was fit, healthy and passed all the tests at 60 so my cardiologist said a BB or CB would make me 'feel unwell', so I have only ever had Flecainide. I have since queried this with him at least twice and he said the older I get the less chance of getting a dangerously high HR. 🤞he has been right so far.
I started on the same low dose at 60yo but had 9 episodes in a month. I was offered an ablation but asked instead if I could double the dose of Flecainide to 200mgs (medium dose) and that stopped the AF and coupled with other supplements, lifestyle changes and no comorbidities I was virtually AF free for the next 11 years. 'Flutter' just starting now.
My cardiologist recommended I take the PIP when I have long runs of ectopic beats which happens occasionally after my ablation. He said that if he prescribes Flecainide he also wants me to take Digoxin as well. He did warn me that taking Flecainide and Digoxin for short periods of time can cause heart arrhythmias and that I must take the medication for a minimum of 5 days or more.
Another thing to consider is stress, having heart problems and not being able to fix them easily caused me a lot of stress which can bring on AF.
It works very well for me now I’m taking 100mg twice daily. I only had one short episode well over a year ago around the time I must have been infected with covid with no other symptoms but a positive test! That one was ended in a few hours with an additional pill - the only time I have ever reached the maximum daily dose! I had more breakthrough episodes when I was on the lower dose that you are taking.
I’m a fit 62 year old but decided to try flec for quality of life reasons; mainly because I like to cycle tour and 100km a day would at some stage bring on AF, making cycling less enjoyable. Initially 50mg x 2 with bisoprolol seemed to make no difference, except reducing attacks to 4-8 hours from 18-36 hours. But the effect for me seems to have been cumulative and I’ve been getting fewer attacks (& briefer). I’m almost AF free now and enjoying the cycling. I’d stick with it for several months before giving up.
Yes, that's been a lifelong problem for me, never stick to any medicine long enough, always wanting instant results!
SamAdminAdministratorArrhythmia AllianceAF Association
Good morning Orbitpluto
Thank you for your post regarding flecainide we would suggest you speak with your Doctor about any changes in your episodes.
They will be able to advise and review if the PIP treatment is the right option for you, as AF can change over time and they will be able to answer any questions you have.
I have attached a link of a booklet that may help.
From personal experience, AF didn't care how much Flecainide I took which was a regular daily dose, it still had a mind of its own and progressively got worse.
Your situation sounds much like my own. I originally started out on 50mg twice daily twelve years ago. It was later raised to 100mg twice daily after almost monthly episodes. Turns out though, was not the flecainide, but the Metoprolol 25mg, I was also taking. After stopping the Metoprolol I had no more outbreaks at all. Then last year my Cardiologist told me to stop taking the Flecainide as well, and just use as a PIP instead. That lasted three months, when I again had an episode. Was put back on minimum dose of Flecainide, and have been fine now for over a year. People say it is a progressive condition, but for me it seems the opposite.
I would like to hear more details about your situation and why you feel like it is NOT a progressive condition? And what you did for "lifestyle modifications"? Thanks.
I only feel this way, because of my own experience. I was first diagnosed with Afib in 2011. After that, I had a few episodes a year. I was taking Flecainide along with Metoprolol. I suffered from multiple episides after a few years. A new Cardiologist at the time, said he thought it might be caused by the Metoprolol. After discontinuing it, I had no more episodes. After moving to Germany in 2019 I have had only one afib episode, and that was two months after stopping Flecainide entirely. My Cardiologist here regularly tells me, " It is about how you feel, not how I tell you". For ten years, I did not drink Coffee or anything containing Caffeine. Then I read that Caffeine really had no effect on Afib. So I tried drinking Coffee again. I currently drink at least three mugs of the stuff daily, and it has absolutely no effect, other than satisfying me. I drink quite strong Coffee, by the way. I also once again indulge in Chocolate, in moderation I might add. I was a Chocoholic, but am still hesitant to go back to that indulgence. I have always read that Afib is a progressive condition. In my case it has been the opposite. I do remember my family Doctor telling me years ago, when I complained about PVC's. He told me " stop thinking about them, and they will go away!" I took his advice and it worked. I can only speak for my own experience. I sometimes think that my own Afib, was brought on by lifestyle. Back then I was a heavy drinker, as well as other vices. For ten years, I was the sole care giver for my mother, who developed Old Age Dementia, she was in her nineties. It was my escape valve. Once I started with Afib, I went cold turkey. Now, I also am fairly active. Back then I was stuck at home.
Thanks for your comments. I wonder why Metoprol would have that effect on you? So, do you still take Flecainide, and if so, how much? Did you lose weight and/or cut things like gluten? Thanks again.
Re your question about "the inevitable acceleration of AF", my AF events have reduced in frequency since I attended to a Vitamin D deficiency. (See the end of my Bio)
So I will always suggest comprehensive blood tests to ensure you don't have any deficiencies that are secretly increasing the frequency of your AF.
i had a similar experience to you with flecainide.
I’d had two Afib attacks that converted on their own within 12 hours . I then had an awful Afib attack that had me admitted to hospital in Spain. They put me on amiodorone to convert me ( I’d eaten too recently to cardiovert safely) which worked within 6 hours .
When I got back from Spain I asked my consultant to take me off amiodorone ( awful awful drug for me I felt awful on it but no Afib) he swapped me to flecainide 50mg am & pm. Same as you I then started getting almost every other day ‘signs of Afib’ and ‘unclassified’ on my Kardia along with palpitations & weakness etc. I stayed on felcainide for 3.5 months - asked my consultant if I could come off and he said NO. Anyhow nov 5 th after 3 Afib attacks on 3 days I stopped the flecainide.
Since then I have only had 3 attacks ( all converted either with PIP flecainide or on own) end dec when I had covid, April ( while very stressed ) , June ( last week )
So for me I am better off without flecainide I haven’t actually come clean with my consultant yet - I’m going to now wait and see if they continue to get more regular or if they slow down again before panicking and going back on Flecainide.
I guess you need to make your own decision - I have gone against my consultants advice ) I did have a very very bad Afib attack they actually put me in ICU they badly needed me to cardiovert but because I’d eaten something they couldn’t without a high risk. I was near passing out with Afib and my HR was going from 30 to 190. I believe my consultant doesn’t want that to happen again for me which is why he stated I needed to stay on the flecainide. I don’t know how your Afib attacks are so I can’t recommend for you but I thought you would be interested in my experience
Yes a couple of things come to mind here. Firstly as everyone says it's important you see your cardiologist and specialist nurse ...
My experience is with PIP Flecainide and Edoxaban (AC) monthly attacks of AF but mostly I can resolve the AF with deep breathing and other techniques within 15 - 20 minutes. If it goes on longer I take the Flecainide PIP and then I have noticed in the days after I take Flec. that I can wake in the night with short bursts of tachycardia and flutter. I'm pretty sure this is a side effect of taking Flecainide PIP because it doesn't happen when it resolves on it's own or with breathing etc. The small print says Flecainide can cause arrhythmias as well as sort out AF. I feel that while these amazing drugs are a life saver they are hugely powerful and the heart is a delicate fine tuned instrument.
In addition someone on this forum has pointed out to me that Flecainide shouldn't be taken on it's own but should be taken alongside a BB or Diltiazem (?) to prevent flutter, so I plan to ask my cardio about that.
My cardiologist said quite definitely that AF isn't necessarily progressive. He said it can be progressive in about 60% of those who are diagnosed, however the 'vagal type' which is paroxysmal AF at night and early morning, is thought to be less likely to become progressive. I'm guessing there must be some research to back this up but I don't know of it personally.
I'm so grateful for this forum, at the same time as everyone says it's important to get answers from your own doctors about the specifics you are having to deal with ...
It must be hard being a cardiologist, everybody seems to react differently, l will have a chat with my EP and see what he thinks to stopping the Flecainide as I'm not serving any improvement. I do take the anti coagulants though and will continue to do so.
I had 50mg flecainide twice daily after diagnosed with PAF but had it stopped due to increase in palpitations after a while. Keep it now just for PIP. Take care 🦊x
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