Flecainide

[Frootbat]

I have PAF which is becoming more frequent so am on waiting list for ablation. Have been prescribed flexainide but gp waiting for me to request commencement. I am hesitant as it seems like a “heavy duty” drug. I have the choice of taking it daily or as a pip. What are people’s e experiences and advice re this drug?

[Sixtyslidogirl]

I can’t give you any advice, only relay my recent experience as a first time user. I also have PAF and have taken flecanide once so far as a pill in pocket, with bisoprolol - 50mg when I had an episode. I was worried as I had read a few dire warnings. However, nothing happened at all. My AF continued and resolved by itself in the morning. Cardiologist said to take another 50mg if it hasn’t worked after an hour. So just really saying that I would like to think the cardiologist wouldn’t have suggested it if your heart couldn’t cope and it seems to have helped many stay in rhythm. Also the dose may need tweaking.

[wat54]

I have been taking 2x100mg flecainide daily for ten years. Previously I was having bad AF episodes every couple of weeks but the flecainide cut this to four or five mild episodes per year. I now rarely have episodes which may be due to other factors e.g. better blood pressure control, but flecainide turned things around dramatically for me.

[Hidden]

I take Flecainide as a PiP. I've suffered from PAF for a couple of years and, like you, the episodes have become more frequent, unfortunately. I take 200 mgs of Flecainide and 10 mgs Propranolol at the onset of an episode and thus far it stops the AF in about an hour.

I have tried taking 100 mgs initially in the hope that a lower dose will stop the AF but every time I've ended up having to take the 2nd 100 mgs after an hour or so because it hasn't worked and every time I've done that the 2nd 100 mgs has stopped the episode almost immediately so now I just go straight to the 200 mgs.

I don't feel great after the episode/Flecainide - nothing major, just tired and a bit nauseous. I thought maybe it was the Flecainide but I had a slow HR episode recently and sat it out until the next morning without taking any Flecainide and still felt tired and a bit nauseous so I've come to the conclusion that it's the AF making me feel like that or maybe a combination of AF and Flec, but the Flec doesn't seem to be making me feel any worse that I would feel without it and I'm very grateful that it works in stopping the AF.

I'm pretty sure I'd rather go to taking daily Flec as the next step rather than an ablation, personally.

[secondtry in reply to Hidden]

My cardiologist favoured daily rather than PIP Flecainide; 200mgs has worked for me for 10 years and no apparent side effects.

Flecainide is a comparatively old tried and tested drug and I understand the risks are less if you have a sound heart otherwise.

[Frootbat in reply to secondtry]

Yes he was happy with recent echo which showed no concerning developments.

[Finvola]

I have been taking 2 x 100mg of Flecainide for almost 10 years. Originally, I had hoped to be prescribed it as a PIP but my EP thought it better to use the drug fully 'in the interests of clinical effectiveness' as he put it. My heart rhythm at the time was daily all over the place - AF, AFlutter, tachycardia, ectopics and one scary run of non-sustained VT - all ramped up by my anxiety as to what was happening.

Flecainide put a stop to it all, except for the ectopics and, you're right, it is a heavy duty drug. My cardiologist describes it as 'advanced drug therapy'. But, for me it works and has given me 10 years of a peaceful heart.

Unfortunately, I cannot advise you how to approach your treatment. In my own case, PIP would not have worked as my episodes were too frequent but had they been occasional, I would have pushed to try PIP first.

Best wishes and I hope Flecainide can be your friend as it has been mine.

[FindingCaradoc]

When i was initially diagnosed with paroxysmal AF in 2005 I was prescribed Flecanide as a PIP, and it worked fine (2x100mg if I recall correctly) after only a couple of episodes in 7 years. In 2012 I had some more episodes and my EP suggested I take it twice daily instead of PIP, which I did for a further 10 years without any apparent side effects for me. I don’t take it anymore as after an NSTEMI in April 2022 it was contraindicated. As an aside the NSTEMI appeared to be the reason for then ending up with Persistent AF, which was sorted for the time being by an ablation in September 2022. Hopefully Flecanide will help you. Good luck.

[Frootbat in reply to FindingCaradoc]

You have talked about years which makes me feeel optimistic as have often been scared of dying soon!

[secondtry]

You don't say how frequent your AF episodes are but assuming the burden is not too much, I would try taking the Flecainide daily (after you have consulted a cardiologist and he/she agrees).

As I replied to Top Biscuit 'heavy duty' maybe but Flecainide is a drug with a successful history backed by my personal experience so far, currently in my 11th year of taking 200mgs/day. Annual blood tests and ECG have not revealed any side effects yet.

[Exfat]

I took the PIP at 300 mg and found it and pleasant. Then switch to taking it daily 50 mg twice a day. This was much easier to deal with the boat of PAF lasted between 24 and 36 hours. When taking the PIP I know haven’t had a boat of a F for Six weeks since taking the daily dose all it leaves me with its feeling a little bit tired and washed out higher dogs was a lot more unpleasant, but nothing significant

[lizzieloo2]

Hi, I'm 69 and was diagnosed with PAF about 10 years ago and was offered ablation immediately. After about a year and various tests to see if there was anything mechanical wrong with my heart (there wasn't) my first EP prescribed 200mg Flecainide PIP with a further 100mg if required after an hour. My episodes at that point were occurring every 9 months to a year. I wasn't given any warnings about Flecainide but I didn't want to take it unless I had to as I don't like taking tablets at all. Eventually, after the episodes became more frequent (every few months) I started to take it. By this time, however, my first EP had left (thank goodness as he was vile) and my second EP told me to only take 100mg with a further 100mg after an hour if necessary. Nothing bad happened so I wasn't frightened any more but to begin with, I would do anything rather than take it - exercises, cup of tea would sort it sometimes but as the episodes became even more frequent, I would take it straight away and the AF would resolve after about 1-2hours. I only ever took 2 once and then called an ambulance as it didn't resolve but then it did so I cancelled the ambulance. I then decided to ask to go on the waiting list for an ablation when my attacks were every week. I waited about 18 months or so and had the ablation in August this year. Since then, I have had 2 episodes - the first the day after the procedure and the 2nd about 11 weeks in. The second episode only last 3hrs at the most and resolved itself - my EP took me off the Flecainide and Diltiazem after the procedure but said I could restart the Diltiazem after the 1st episode but didn't want me to start the Flecainide unless absolutely necessary. He's always told me he didn't want me on it long term. I've now had my 24hr Holter ECG monitor which was fine and I have a follow-up OPA with the arrythmia nurse in January. I'm feeling very confident now. Good luck

[AustinElliot]

I have Flecainide as a PIP. Was told by EP to go to the Hospital for the first 50 mg dose. Did that and the ER Doctor thought the dose was too low. I was there for 5 hours, converted on the way home ($4,500 poorer). At the next episode I tried 50 mg, did nothing, 1 hour later 50mg, nothing, 1 hour later 50 mg. Converted during the night.

I talked to the EP and he said I could try 200 mg (300 mg being the max) Next episode did 100 mg, and then an hour later 100mg. and converted to NSR about an hour later.

So far no side affects. I was/am hoping that the Flecainide as a PIP work, I really rather not be on it every day. But who knows. Hope you are able to get it sorted.

[BeeBee79]

Most people love Flecanide but I had a really bad experience on. It’s known to extend your Long QT interval which resulted in me having an out-of-hospital cardiac arrest. For anybody taking this, I would request an ECG after a week to see where your Long QT interval measurement is at.

[Buzby62]

I don’t have any experience of flecainide other than asking my EP about it recently and for me he didn’t recommend as I have a slow resting HR. Cardiology wanted to try me on it before that and I asked to speak to an EP first to discuss my options. I came away from there on the waiting list for cryoablation which is scheduled for this week. This just goes to show once again how everyone’s AF is different and the importance of discussing your individual case with a rhythm specialist (EP).

I’ve found the consultant’s secretaries to be very helpful via email if you need any questions answered in between consultations.

Links if you haven’t seen them and for the browsers

Flecainide info: api.heartrhythmalliance.org...

PIP info: heartrhythmalliance.org/afa...

[PAP48]

I take Flecainide 50mg twice a day with 100mg as PIP. I can only speak as I find the drug, of course, as I’m not medically qualified but it has been good for me. Originally I was prescribed 50mg once a day but after a particularly horrid time at the beginning of the year with frequent and long lasting episodes of AF, my cardiologist upped the dose and, touch wood, I’ve not had an episode since. I take it with Adizem and a blood thinner, Rivaroxaban. Maybe I’m a bit slower but no other side effects. Just FYI I’m 75 years old. Hope this helps.

[Frootbat in reply to PAP48]

Yes thank you it does help. All the best to you.

[DebbiB28]

I was prescribed a low dose - 50mg daily for ectopics that were affecting quality of life. I too was very nervous at first but they have dramatically improved things for me. I would say give it a go. I'm glad I did!