Flecainide use and alternatives?

[Suzanne-Cheshire]

Flecainide appeared to work for me at reducing/controlling atrial fibrillation but not any more despite using what I think may be the maximum dose of 400mg on some days.

I've had ablations but the AF keeps returning.

I have only taken it as a pill in the pocket since my last ablation and have had up to a month AF free at a time. But when it starts again it goes on for days despite taking 400mg a day. For the last month since seeing my Consultant I've been taking 100mg twice a day even when I don't have AF and an extra 200mg if I get an episode.

But when I get a bad episode the flecainide doesn't seem to help at all any more. I think it just makes me feel dizzy when I take it without symptoms. I'm now feeling reluctant to take it every day unless I have symptoms.

Can anyone with a similar experience suggest another drug that has helped them instead so that I can raise the issue with my Consultant.

Thanks for any suggestions.

[etheral]

Dofetilide (Tikosyn) has kept me afib free for 2 yrs now.

[Suzanne-Cheshire in reply to etheral]

Thanks for the information. Are you in the US? I just googled it and it says it's not available in the EU which is a pity

[etheral in reply to Suzanne-Cheshire]

Yes, am in US. Haven't been able to find reason for unavailability in EU. Wondering if it's just a matter of cost. You have to be hospitalized and monitored for 3 days while the drug is introduced. Best of luck..

[Suzanne-Cheshire in reply to etheral]

Thanks for replying. Yes, looks like the EU couldn't do the right deal over cost, so it's not marketed here Maybe after Brexit!

[Ppiman in reply to Suzanne-Cheshire]

After Brexit? Such faith! 😳

I thought it was withdrawn owing to the dangers of its causing ventricular arrhythmias.

[Suzanne-Cheshire in reply to Ppiman]

We live in hope!

It says in a public statement from the EU that is was withdrawn voluntarily by the drug company for commercial reasons; so who knows!

[Ppiman in reply to Suzanne-Cheshire]

Hope runs eternal.

I suspect the commercial decision concerned the potential for bad publicity and even perhaps litigation costs given the risky side effect profile. The EU involves itself only with drug approvals and keeps well clear of national decisions such as drug costs and reimbursement.

Steve

[BobD Volunteer]

The poison limit for flecainide is 300mg in any 24 hour period so please don't take any more than 300mg..

Many people say that flecainide stops working for them but since it is not a drug which has receptors in our body it is not drug failure it is AF progression that is the proplem.

The only other two anti-arrhythmic drugs worth considering are amiodarone ( very unpleasant drug and short term use only) or propafanone which I used for some years till successful ablation. Do remember that many people find flecainide pro arrhythmic and that stopping it helps their QOL.(quality of life) . If you have come to the point where drugs are not controlling your AF and fiurther ablations are not appropriate (I had three before mine was sorted) then it may be time to consider pace and ablate or just accept permanent and take beta blockers to control rate.

Some things to discuss with your Electrophysiologist there.

[Suzanne-Cheshire in reply to BobD]

Thanks very much for responding and for the help. I'm going to do research on pace and ablate. Also I didn't realise that flecainide could be pro arrythmic - maybe I've been taking it so long I forgot what the small print says!

[jwsonoma in reply to Suzanne-Cheshire]

My Cardiologist insists I take a beta blocker while taking Flecainide to keep Flecainide from causing rapid HR.

[Suzanne-Cheshire in reply to jwsonoma]

Thanks for commenting. I think the reason I don't take a beta blocker is that my heart rate is fairly low when not in AF - average about 58 BPM and when I was put on a beta blocker it went well down in the 40s. So maybe without flecainide, which I didn't realise had beta blocking qualities (thanks BobD), I could take a beta blocker and just manage the condition, if possible, instead. Another question for my physiologist!

[ublong in reply to BobD]

Hi, I am new to this site. I have about 4 episodes of A Fib per month. Taking

Eliquis and my PIP is Propafenone which puts me into NSR in less than 24 hours.

My cardiologist wants me to go on Multaq which has many side effects and which I believe is no longer prescribed in the UK.

Did you take Propafenone on a daily basis? Did it stop the a fib from happening? Did yet stop working for you?

Thank you. Your answer would be appreciated.

[BobD Volunteer in reply to ublong]

I took propafanone of a daily basis for quite a long time. Drugs don't stop working but the AF progresses is what happens. I still had AF but less often. Multaq is still used but less popular as it largely failed to meet expectations.

[ublong in reply to BobD]

Good morning and thank you for your prompt reply.

. I forgot to ask if you had bradycardia when you were on propafenone.

. My cardiologist thinks the propafenone caused the bradycardia I have experienced a few times.

[BobD Volunteer in reply to ublong]

No

[Suzanne-Cheshire in reply to BobD]

I've asked my electrophysiologist to be moved to another drug and mentioned propafenone. I'm thinking that if amiodarone is only short term it won't be the solution unless I have another ablation before too long. I've also mentioned that there seems to be a general consensus that 300mg is the maximum dose of flecainide in 24 hours.

So, many thanks for sharing your knowledge and experience.

[wilsond]

Maximum dose is 300 mg a day.......

It eventually gave me problems in that it was causing arrythmia,but ok as pill in pocket approach. I was told to take 100 mg if an episode started ...wait one hour or so if no improvement,another dose.

Best wishes

[Suzanne-Cheshire in reply to wilsond]

Yes, I thought 300mg was maximum dose but my consultant assured me it wasn't. But I won't be taking more than 300mg in 24 hours again, for sure. Thanks for the other tips too.

[jeanjeannie50]

Yes, I too found that after taking Flecainide for a few years, it was giving me arrhythmia's, as well as terrifying dreams. I stopped taking it in January this year and have been fine ever since. I've had 3 ablations and been told I can't have any more. My EP said they work for most, but I'm one who's not helped by them. Saying that, after my third one I no longer get the debilitating AF attacks like I used to.

For some reason I usually get mild, constant AF in the winter months.

Jean

[maria68 in reply to jeanjeannie50]

Good morning jeanjeannie 50, I’ve just read that you say you get terrible dreams whilst taking Flecainide. I have had absolutely awful nightmares and woken up feeling exhausted and with palpitations. I take 50mg twice a day and didn’t realise terrible dreams were a side effect- can’t find it on enclosed information. So it’s been very interesting to read that you have suffered. I also have had difficulty getting to sleep- it’s so frustrating as I have always been a good sleeper.

Thank you personally for all your posts, you are very understanding and so helpful.

[jeanjeannie50 in reply to maria68]

Maria, I was taking 2 x 100mg Flecainide and all was ok for a year or so, then I started having hallucinations, would think I'd woken and someone would be leaning over me or near my bed. They would happen every few months, but then when I had them every few days I just had to stop this medication. Think I'd have had to be locked away otherwise as I was terrified to go to sleep. Thank goodness, 6 months later all is still well. How the mind can conjure up these things, well goodness knows!! I feel really sorry for you with your terrible dreams.

Wishing you well.

Jean

[Suzanne-Cheshire]

Thanks very much for sharing your story. Your experience is very like mine. I've had 3 ablations for Atrial Fibrillation and unfortunately been unlucky with the outcomes. It's unlikely they will attempt another.

I stopped the flecainide dose altogether today after discovering from this site that it could be making the AF worse and have had the first clear day for a week. It had got so bad on the high dose and ironically I had been in ignorance increasing the dose to maximum as it was so bad.

[jwsonoma]

You should check with your doctor about stopping Flecainide. You may need to wean off of it to be safe.

[Suzanne-Cheshire in reply to jwsonoma]

Yes, thanks you are right. I had better check how to do it. I haven't been taking it though until after my last consultation (only as pill in pocket). I'll consult the GP as my next hospital appointment isn't until December.

[Rubyray]

I am on flecainide 50 mg every 12 hours. Also on metoprolol 25 mg 2 times per day since March when I had pacemaker installed. Main issue is constipation I attribute to flecainide. Only one AFIB episode for a couple hours since pacemaker. Wore 30 day heart monitor in Feb. because of fainting when converting from AFIB to normal heart rhythm. Passed out on day 27 for 8.6 seconds. Pacemaker installed on March 4. Don't know if this helps in anyway but it is my history.

[Suzanne-Cheshire in reply to Rubyray]

Thank you for replying; I hadn't realised that the drugs would continue after a pace and ablate or pacemaker (which I am assuming are the same thing).

[Rubyray in reply to Suzanne-Cheshire]

Thanks for replying. I had to look up ablation. Never heard of it.

[Cookie24]

Propafenone works better for me than Flec. EP likes Flec and said they are the same class, but he prescribed propafenone when I insisted flec does not work for me.

[Suzanne-Cheshire in reply to Cookie24]

Ah, that's interesting because on looking up propafenone which BobD mentioned it says it works in a very similar way to flecainide so I was thinking perhaps it wasn't an option for me. So thanks for this info.

[Suzanne-Cheshire in reply to Suzanne-Cheshire]

I've asked my electrophysiologist if I can be moved to propafenone.... awaiting a response. Many thanks for your words.

[Suzanne-Cheshire in reply to Suzanne-Cheshire]

I've been told by my electrophysiologist that propafenone is very rarely used in this country now. He's put me on 150mg flecainide night and morning for 2 weeks as a first new approach. After that if it's not successful (which it hasn't been so far) it will either be amiodarone short term and 4th ablation or try solatol (although I didn't get on well with bisoprolol when I was on that. But if needs must.

[Hidden in reply to Suzanne-Cheshire]

If you opt for another ablation try and get on the trial of the AcQmap system for ablation apparently its aimed at difficult to shift cases.

Good luck

[Suzanne-Cheshire in reply to Hidden]

Thanks Andy. I'll ask about that and Google it in the meantime. My outpatient appointment at Hammersmith Hospital is early December, so I will go prepared.

[37Polly]

I too am now on dofetilide after flecainide failed. Feels like a miracle drug. Seventeen months and counting....but costly! It has been around for many years. And yes, needs careful monitoring.

[Suzanne-Cheshire]

I'm glad it works for you after flecainide failed, and thanks for replying and that information. I wish it was available in the EU....