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new on Flecainide

execz1 profile image
56 Replies

My afib started 11 years ago with one episode and then went silent for nearly six years . So for the first six years I was on low dose diltiazem and one standard aspirin. for the last four years I was put on Multaq and Eliquis. Multaq kept me in NSR for about a year and then progressively became ineffective. So after nearly two weeks without Multaq I had an afib episode at which time I started my first Flecainide 50mg tablet which stopped the episode in two hours. I am hopeful that this medication will help me stay in NSR and avoid the need for ablation.

please share your experience with Flecainide?

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execz1
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56 Replies
Finvola profile image
Finvola

I've been taking 2 x 100mg Flecainide for nearly 10 years and it has stopped my PAF completely. It was the decision of my EP to use the higher dose to start with as I was keen not to go down the ablation route, for various reasons. So far, Flecainide has been my friend.

execz1 profile image
execz1 in reply toFinvola

Thank you for giving me hope that Flecainide will do the trick . did you try any other treatments before Flecainide. Also do have any side effects.

Happy new year

Finvola profile image
Finvola in reply toexecz1

The only drug I was given before Flecainide was the dreaded Bisoprolol which was swapped for Nebivolol at my request a few years later.

Flecainide has the potential to cause side effects as you probably are aware and, depending on the patient, these can be non-existent, minor, manageable or severe. In my case, it caused some short runs of Atrial Flutter at the start but that hasn't happened in 6 or 7 years. It has also lengthened the QT interval on my ECG's but it is still within safety limits and my cardiologist is happy with how well it is working for me.

I hope you find Flecainide to be the answer to keeping you in sinus rhythm.

Happy New Year to you too.

execz1 profile image
execz1 in reply toFinvola

Hello Fnvola,

You experience with Flecainide is one of the best stories I have read on the subject. I hope I will be able to do as well and with your report will make it easier for me to be optimistic about the outcome. Thanks again

AAJJTt profile image
AAJJTt

My PAF treatment (Jun 19) is daily Flecainide 50mg (am) and 100 mg (pm) along. Higher dose in the evening as my Afib exhibits a ‘vagal tone’.

The Flecainide has been a great solution for me, so far - stability with no side effects. I had one AF episode (Jul 20), which spontaneously synced to NSR. Since then I have been ‘Afib free’. No sustained episodes, in fact nothing but occasional runs of ectopics.

I do have an ‘emergency PiP’ option too. Should I have an episode, I can try an extra 100 mg of Flecainide and 2.5 mg of Bisoprolol. My Afib is usually with RVR, so the beta blocker is there to protect my ventricles. The idea is this PiP will help nudge my heart back into NSR before I have to present at A&E. I am pleased to say, so far, I have never had to try it. In previous episodes, I returned to NSR spontaneously in a few hours.

execz1 profile image
execz1 in reply toAAJJTt

hello AAJJTt,

Thank you for your reply and your encouraging experience with Flecainide . today is my second day @ 50mg twice a day. Probably it is too early to celebrate. I will report on my progress in a month or so

Happy new year

AAJJTt profile image
AAJJTt in reply toexecz1

I hope you get the results you desire. I am actually having a conversation at the end of this week, discussing whether I could come off Flecainide, which will be interesting.

Happy New Year too.

execz1 profile image
execz1 in reply toAAJJTt

Thanks again, hope that you share the result of your conversation.

have a ggod one

Singwell profile image
Singwell in reply toAAJJTt

I titrated off mine post ablation. They'll tell you it's OK to come off cold turkey but I didn't find that. Use your own judgement. My EP had no problem with my cutting the pills in half.

croesio profile image
croesio in reply toexecz1

I was put on Flecainide daily a few years ago but then it stopped working as well. I had an ablation which lasted a few months. But then was put on pill in the pocket approach. if it raises its ugly head I now take 2,5mg bisoporil then 1 hour later I take 100mg Flecainide. It seems to work eventually. Have been doing this for quite a few years. Tried taking them both together but it didn’t work. Hope this is of some help.

execz1 profile image
execz1 in reply tocroesio

hello Croesio

Thank you for taking the time to respond to my post. My goal is to avoid Ablation so I am hoping that Flecainide will work for me .

happy new year

AAJJTt profile image
AAJJTt in reply toexecz1

This has turned out to have generated quite an interesting thread.

AF is a complicated condition - electrical paths, calcium and sodium handling, and structural remodeling play a role in the development of AF with the clinical presentation of AF in people being diverse. Clearly seen by all the comments on this thread.

I’ve not been a candidate for ablation yet. My cardiologist described an ‘arsenal’ of treatments for Afib and with my case, he’d rather leave the ‘heavier weapons’ until or if I need them in future.

The only criteria for this weeks conversation was to remain ‘Afib free’ and maintain a high exercise tolerance for another 12 months. This I’ve achieved.

I admit I will go into the conversation about removing it with some trepidation; I rather like the status quo. Despite what has happened to me (heart attack caused undiagnosed Afib). I don’t feel I have any limitations at the moment. On one hand, I’m not keen on the prospect of more Afib episodes again, even if terminated by Flecainide PiP (all pre-medication episodes spontaneously reverted to NSR within a few hours too). On the other, I feel I ought to try, if I can. I could always go back on daily medication.

At the end, it will be a big risk/benefit question. 🤔

execz1 profile image
execz1 in reply toAAJJTt

All I want is achieve afib free for at least 6 months and if I get more I will be happy. So if 50mg twice daily doesn’t do it then maybe a 100mg will be the answer. I personally will not rely on the PIP path at least for the next year or so.

Please let us know if you go with PIP and how frequent will your episodes be then.

good luck

AAJJTt profile image
AAJJTt in reply toexecz1

PiP only it is. Apparently it is a bit of grey area, what to do with medicated and generally fit/healthy people who reach 3.5 - 4 years ‘Afib free’. The current low dosage is not linked to any long term Flecainide issues but there is no harm in trying to reduce medication to see if NSR can be maintained without it.

My concerns about entering Afib again and terminating with the PiP appear to be unfounded in the short term; it shouldn’t be detrimental. If over a few months, I experience more episodes (like 2 a month) then i just return to previous regime of daily meditation.

The priority is to keep stable, symptom free and maintain my high exercise tolerance, which is key to my Afib management and long term health generally.

I have a race to do early Feb, and will start to taper down the Flecainide from mid Feb.

- 50mg (am) and 50mg (pm) for a month, then

- 50mg (pm) only for a month

- if still no episodes, then drop the evening dose.

If have the PiP plan too, taking me upto 300mg, if needed.

Gulp! A bit nervous but I will try.

Shrek1974 profile image
Shrek1974

Hello Execz1,

I’ve been on Flec 2 x 100mg for 3 & a half years and it’s been good for me. Only twice in that time I’ve taken an extra as a PIP - once after very narrowly avoiding a head on collision with an idiot overtaking on a blind bend & once from a viral trigger, both did the trick. It gives me some crazy dreams at times but never bad ones, they honestly, mostly amuse me.

Best of luck. Stay strong.💪💪

Steve

execz1 profile image
execz1 in reply toShrek1974

Hello Shrek1974,

Thank you for sharing your experience with Flecainide. I am encouraged that you seem to have almost afib free for 3 1/2 years with no or minimal side effects. These results are way better than the average results of ablation procedures.

congratulations and happy new year

Shrek1974 profile image
Shrek1974 in reply toexecz1

Cheers. Happy New Year!

Af8b_futter profile image
Af8b_futter

I take 100mg 3 times daily and it seems to work for me. But I do seem to suffer with flutter alot when anxious. I was prescribed it first for rate control alongside bisoprolol. I now also take digioxn for flutter.

execz1 profile image
execz1 in reply toAf8b_futter

Hello Af8b

thank you for sharing your experience with Flecainide. Thus far I haven’t been diagnosed with flutter and actually it is thought that heart fluttering during anxiety is very common and I may have experienced it all my life.

happy new year

Mcopt profile image
Mcopt

I have been on flecainide 100mg 2x day for just over a year. I previously had random episodes of AF which reverted by themself until November 22 when I had a 5 week episode the flecainide stopped it within 2 days and so far so good 🫰I have discussed going pip with it after a couple of weeks of half dose but have not been brave enough yet to do that I don't seem to have any side effects and I take 1.25mg bisoprolol in the morning. Good luck

execz1 profile image
execz1 in reply toMcopt

Hello Mcopt

Thank you for sharing your experience with Flecainide. please let us know if you successful in changing your current dosage.

good luck and happy new year

I take 200 mgs of Flecainide as PiP (which I believe is fairly standard) and it stops my AFib in about an hour. 50 mgs is a very low dose for a PiP so if that's working for you it's good news!

execz1 profile image
execz1 in reply to

Hello TopBiscuit

thank you for your response. This is my third day on my 50mg Flecainide as new patient to the medication and so far is working. So you maybe right that this dosage will be too low to sustain NSR for the long term.

How often and how long your episodes between PIP treatments.

happy new year

in reply toexecz1

I'm sorry, I misunderstood your original post and thought that you were taking Flec as a PiP. 50mgs is a reasonable starting daily dose (usually it's twice daily though?) and if that works for you that's great!

I was only having maybe one episode a month or every couple of months but over the past year it's steadily increased to one or even two episodes a week. I was thinking that it was probably time to consider going to a daily doseof Flec but just before Christmas I completely gave up alcohol and am going to do that for 3 months as an experiment to see if it reduces the frequency of my episodes of AFib as I know that alcohol is a trigger for me. I've already gone 2 1/2 weeks without an episode so perhaps it's working.

Singwell profile image
Singwell

I was on 50mg X 2 for 3.5 years. I chose to stay on a lower 'maintenance dose' as I'm very responsive to pharmacological products. I had Diltiazem to counter the Flecainide, which is a common strategy for those taking it regularly. I used additional PiP if AF broke through. By and large no problems though in my case I'd choose not to have the Diltiazem again. My share is - it takes from 10 days + to upload the Flecainide and during this time you may feel weird. Headaches, nausea and slight wooziness were my experiences. But I much preferred it to Bisoprolol, which slowed me down and made me feel tired. On the Flecainide I had more energy to get on with life between episodes of AF.

execz1 profile image
execz1 in reply toSingwell

hello Singwell

Thank you for informative response. I was already taking 120mg Diltiazem for blood pressure, so if it adds effectiveness to Flecainide then well and good. Your experience will help me to manage my journey with Felcainide.

happy new year

secondtry profile image
secondtry

50mgs x2 per day didn't stop my AF

100mgs x2 did.

Had no other drugs and followed a regime of many lifestyle changes to maintain the remission period.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

What were your lifestyle changes? Thanks.

secondtry profile image
secondtry in reply toPommerania78

Supplements, reducing stress, better eating, drinking, exercising, breathing & sleeping. Discussed often here in more detail.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

Starting today I will examine your other posts. I may have other questions. I want to put Afib "in my rearview mirror." Thanks again.

execz1 profile image
execz1 in reply tosecondtry

hello secondtry

Thank you for your reply . It seems 100mg twice a day is most common dose that achieves NSR.

happy new year

Tapanac profile image
Tapanac

TapanacNightmare2

A few seconds ago

I’ve been on flecainide 50mgs twice a day and was on 1.25 bisoprolol also apixaban aldo apixaban

Tachycardia kicking in occasionally but mostly heart rate 39-43

Decision taken to insert pacemaker snd bisoprolol upped to 2.5 flecainide same. So far all good 🤞

Good luck to you

Xx

execz1 profile image
execz1 in reply toTapanac

Hello Tapanac

Thank you for sharing your experience.

Please forgive me for using my reply to you as a way to reach out to so many fellow Afibers and thank them all and wish them all a happy and AFIB free year.

Tapanac profile image
Tapanac in reply toexecz1

And a happy and HEALTHY new year to you and all our fellow Afibbers and admin

MS444 profile image
MS444

Flecainide might work. Depends. You can adjust the dose downwards until it doesn’t work. Only if the EP agrees. If PAF gets more and more frequent you might need to consider ablation. Sometimes ablation is a long term “cure”. 5 years so far for me.

execz1 profile image
execz1 in reply toMS444

hello MS444

Thank you for sharing your thoughts. I am very reluctant to do an ablation for the chance for success in general predicts many repeat procedures. In people over 80 years of age success rates are not attractive.

happy new year

Garaidh profile image
Garaidh

Hello there! Just a quick reply while wishing you well. ☺️ Flecainide has, overall, been excellent with me (male, 60, reasonably fit, had rhythm probs all my life). Started 2½ years ago. No side effects really - nothing very noticeable, anyway! Afib burden down by over 90%. I can be very flexible with the dose... if I'm being good with my habits and life not too stressful, 2 x 50mg works perfectly + 1.25 Bisoprolol. I can move up to 200mg if it's a bumpy patch. EP given me green light up to 300mg (I'm a large human). It's been, by a very big margin, the most helpful drug I've taken. One caveat: I stopped drinking alcohol completely almost a year ago as it is a bad combo - if I'd a breakthrough Afib episode while drinking and on Flec, the conversion was unpleasant. Happy new year!

execz1 profile image
execz1 in reply toGaraidh

hello Garaidh

Thank you for sharing your experience with Flecainide. I also have stopped taking any alcohol and avoiding most frequently mentioned triggers. I find stress and anxiety being the top triggers followed by over physical work and large meals.

gtkelly profile image
gtkelly in reply toexecz1

My top triggers same as you plus alcohol.

On Apixiban 5mg x2 per day since first episode of Afib. Cardioverted./ / Second episode 3 months later. Cardioverted. Put on Flecanide 50mg x 2 plus 1.25mg and continue Apixiban. All good for 3 years. //Third episode July 2023. Cardioverted. Taken off Flecanide but remain on same dose Bisporolol and Apixiban. Told to use Flecanide if necessary over period of 12 hours as PiP, 100mg x 2. If unsuccessful report to A&E for cardioversion. So far so good.

execz1 profile image
execz1 in reply togtkelly

I am surprised that you were put on Flecainide after two episodes.

in my case I was on Aspirin and Diltiazem after the first episode in 2012 and was afib free until my second episode in 2017 after which the added Eliquis. in 2019 I had several episodes with AE visits at which time they added Multaq that kept me afib free for 11 months and then gradually more episodes and more frequent. So now we giving Flecainide a go . I am praying that this one will succeed where the others failed.

happy and afib free new year

Singwell profile image
Singwell in reply toGaraidh

Oh, those Flecainide conversions! And I didn't even need alcohol to get them. But if I needed to take 100 or 150 PiP I often has a conversions pause.

Garaidh profile image
Garaidh in reply toSingwell

Absolutely... it's one of the reasons I try to keep my Flec dose as low as possible, even although I'm on the edge of Afib at times. Since I stopped drinking alcohol, and kept my average dose lower, I can drift quite easily back into NSR. It's a bit of an endless juggle and trace off! But overall, Flec has been really positive. (When still drinking I really got the unpleasant pause and could tell from the EP that it wasn't a great thing!)

Singwell profile image
Singwell in reply toGaraidh

I hear you! Currently I'm off all heart meds (except anticoagulants of course) after what seems to have been a successful ablation. The conversion pauses are the one thing that would put me off taking Flecainide again if AF returns.

DesertTrailRunner profile image
DesertTrailRunner

my experience with flecainide only lasted three days. On the first day while running my heart rate spiked up to 236 and I had to stop and walk until the lightheadedness left and my vision was restored. On the second day, after about 48 hours on Flecainide, I had a cardiac ablation. The third day, Flecainide caused me to feel indescribably horrible and then, in the evening after I went to bed, breathing started to become difficult, and there were crackling sounds in my lungs. Therefore I stopped it and have never taken another dose since then.

What my cardiologist settled on which seems to work well for me to take 25 mg of metoprolol tartrate twice a day. So that’s what I do every 12 hours.

execz1 profile image
execz1 in reply toDesertTrailRunner

Hello Desert TrailRunner

I am sorry to hear about your experience with Flecainide . You mention that you had cardiac ablation after 48 hours of taken Flecainide. . This seems to be an error, please confirm if is correctly stated!!

Hope you do well with the new treatment plan.

DesertTrailRunner profile image
DesertTrailRunner

Hi execz1 and thanks for the question. That was back in 2022 so I had to check the written records.

I miss-spoke when I wrote that it was before an ablation procedure it was 48 hours before a cardioversion.

The electrophysiologist’s instruction was to start flecainide 48 hours before the cardioversion.

I did have a cardiac ablation about a month later.

And then another ablation a couple months after that.

After the cardioversion plus two cardiac ablations, atrial fibrillation seems to be staying away.

execz1 profile image
execz1 in reply toDesertTrailRunner

Glad to hear that you are now afib free. I am wondering how much time was spent on getting ready for your two ablations in addition to the recovery time before returning to normality?

DesertTrailRunner profile image
DesertTrailRunner in reply toexecz1

Time… well, the cardioversion was Sept 26. It was done because I’d been having atrial flutter for over a month.

Heart was normal for a week or two then went into atrial fibrillation. First cardiac ablation was done Dec 5, 2022.

During the week after that I was taken via ambulance once, to hospital emergency department with heart attack symptoms and second time in car driven by my wife. Then it settled down for a while but late in that December it went back into atrial flutter.

The electrophysiologist wanted to do a cardioversion as soon as possible but they were short-staffed and couldn’t arrange one before end of month. So Dr decided to do the second ablation. It was done on January 23, 2023, after about 4-5 weeks of atrial flutter (at 140-160 BPM).

Went back into atrial flutter once after that 2nd ablation. That flutter was brought down to normal range in less than two days with sotalol 120 mg twice daily. Heart rate was trending down so quickly that doctor ordered me to stop taking it on 3rd day.

Since then I’ve been on 25 mg metoprolol tartrate twice daily, for sake of preventing atrial fibrillation.

I try to workout daily, but at very easy paces on ergs (bike, ski or rowing) or running or bicycling outside. If I get lazy and don’t exercise for days or a week or more, the afib threatens to return.

Cardiologist recommended I use Apple Watch to monitor for afib. So I’ve been doing that and it reports every 7 days, what % afib it noticed during the times it checked. It has ranged from a low of “2 percent or less” to a high of 25% . Most recent afib monitor report was 12%.

But I feel MUCH better than when afib was constant or worse (worse was atrial flutter).

I’m happy and thankful.

Cheers.

doodle68 profile image
doodle68

Hi exe as my P-AF progressed over the years I tried flecainide 50mg twice a day but it did not help, I think I was too late trying it due to arrhythmia clinics being cancelled because of Covid . To try it at all I had to pay to see a consultant and for an echocardiogram before it could be prescribed.

My P-AF progressed to persistent as I waited 8 months for an ablation which I had in October , it resulted in just 4 days of normal sinus rhythm ,cardioversion was tried but nsr was still not achieved.

I was asked to try flecainide again 50 mg twice daily and an extra 100 as a pip when required.

The day after starting taking the flecainide I went into nsr and I can’t tell you how amazing it feels not to have constant symptomatic AF . I am just hoping it lasts and there are no side effects .

execz1 profile image
execz1 in reply todoodle68

Hello doodle68,

It seems you may have overcome number of afib disappoints owing it to Flecainide. I share your hope that your NSR continues.

happy new year

Afibflipper profile image
Afibflipper

I’ve taken Flecainide 100mg twice daily since Aril 2022 following CV x2. It changed AFib to AFlutter which was ablated Nov ‘22. Was NSR until recently but recently had some PAF - just sitting tight to see if just a blip or need to re-address it all

execz1 profile image
execz1 in reply toAfibflipper

sorry to hear that Flecainide yet to successful for you. Hope it works out for you

happy new year and NSR

Duckey profile image
Duckey

I have been on flecanide for almost three years. No afib so it works for me so far. 5o mg twice a day.

Good luck!

execz1 profile image
execz1 in reply toDuckey

hello Duckey,

Good to hear your success with Flecainide.

was it your first anti arrhythmic? are you taking other meds with it.

Thanks and Happy New Year

Duckey profile image
Duckey in reply toexecz1

Yes it is the only drug for afib. I do take blood pressure medications.

fcmdl profile image
fcmdl

I am schedule for cardioversion mid January/24 for Afib. I have a question that I hope someone on the forum can answer. I started diltiazem last year and seem to have lost a good deal of hair (female - long thick to the point where I have been asked if I cut it all off - very uneven) while taking it. After several ecgs or eegs (sorry, not sure of which term) I was diagnosed as having constant Afib. I started taking Flecainide about a month ago and have to say I feel horrible on it. I started with one tab in the morning and one at bedtime, which was increased to 2 in both am and pm, then 1.5 am/pm. Nauseous, exhausted, vision issues). Had a hard night last night with chest pain over heart area when lying down. Has anyone else had such an experience. Thanks in advance for any assistance.

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