PAF and Flecainide

[Deskford]

Hi, I was diagnosed with PAF a year ago and put on Bisoprolol which was only of limited success in controlling/reducing AF episodes - I was in AF circa 30% of the time according to my 2 week Holter tests.. After a full heart check in the autumn of last year, which confirmed PAF but that there were no structural issues with my heart (BP was also fine, as were blood tests for thyroid, liver and kidney). I’m not over weight, eat sensibly and take moderate exercise. I am 74.

In late November, my consultant prescribed me Flecainide at 100mg per day along with 12.5mg of Atenolol and 10mg of Apixaban blood thinners. Over the course of the next month and a half the AF episodes reduced but I did have days of high resting heart rate (130BPM) and often they tipped into AF episodes.

At the end of January my consultant increased my dose of Flecainide to 200mg per day which I take in 4 x 50mg doses spaced during the day and evening. For the first time since I was diagnosed I had 10 days completely free of AF but then bang a full 24 hours of AF and or high heart rate, accompanied by the chest tightness, fatigue, elevated body temperature. It seems circa 10 AF free days is the norm for my current drug regime.

My questions are

1, Is this the best I can expect? If I my AF episodes remain at circa 10% of an average week?

2, Should I consider increasing my Flecainide to 300mg a day?

3. Would a cardio version be worth a shot? My consultant doesn’t think it would work for me.

4, My consultant suggested that if 200mg of Flecainide didn’t work I should consider taking a drug.

called Amiodarone which has some potentially quite serious side effects. I really don’t want to go down this route if at all possible. Are there any other drug combinations that have worked for anybody who has had similar to myself, limited success with Flecainide?

5, I am on the waiting list for a cardio ablation but it could be a year before it might happen.

[BobD Volunteer]

Electrical cardioversion (DCCV) is sometimes used to attempt to revert to NSR when a patient has been in AF for some time. Since your AF is paroxysmal there is little point. The main function is to see if you can attain NSR and of so do you feel better.

You should not change any medication doseage without permission or instruction from your attending doctor. 300mg of flecainide is the maximun permitted dose in any 24hour period.

Amiodarone is indeed highly toxic and must be considered the drug of last resort preferably used for only short periods .

[Deskford in reply to BobD]

Hi Bob, thanks for your reply, I wouldn’t change my dosage of Flecainide without the agreement of my doctor and am aware 300mg is a maximum dose. I was really wondering out loud if, given, the relative success of 200mg, without side effects, going up to 300mg might get me ‘there’ and if any other site member was/had been in a similar situation to myself. I note your warning about Amiodarone - definitely a last resort!

Thanks again.

[OzJames]

there are various things we can do to help mitigate the amount of times AF visits us. Firstly when you next get your bloods checked ask them to add Vitd3, magnesium and CoQ10. I was deficient in all 3 so 12 months ago in started supplements. A lot of people here have things that can trigger AF, mine are alcohol, caffeine, eating too much food or eating too quickly, going to bed within 3 hours of my dinner and cold sores.

Have a think at what you were doing in the days leading into your episodes and you might find a trigger. I find exercise helps reduce ectopics and therefore AF. Sadly some doctors don’t discuss these things with their patients. I also practice mindful nasal breathing which keeps my HR steady.

[Deskford in reply to OzJames]

Thank you for your suggestions, I’ll certainly investigate the supplements. Unfortunately, I’m unable discern any particular trigger to my AF, seems to be down to age and genes!

[OzJames in reply to Deskford]

Yes genes does play part of it. Just something I picked up from Ppiman’s comment about whether you possibly had a virus…. my cold sore trigger is actually the HSV virus and the reason it can trigger AF is the inflammatory effect of the virus around the heart. Virus's can be triggers for AF so if your temperature was elevated then that could potentially be one of your triggers. I’ve had AF happen twice with Cold Sores as well as when I had COVID booster!

[Ppiman]

Search online for "low dose amiodarone safety" and you will feel much relief. That said, close monitoring with that drug is important. Flecainide itself is not without potential problems, keep in mind. The occurrence of fever surprised me. Are you sure you didn't have one of the several viral infections doing the rounds?

Steve

[Deskford in reply to Ppiman]

Thanks for your reply, I will check out low dose Amiodarone as a possibility.

[Cliff_G in reply to Deskford]

There is a study (Pub Med PMID: 29392132) which compares Amiodarone to Berberine, something that is also used in some Traditional Chinese Medicines. The results of that study are pretty remarkable, but it is a small study, and of course anything "as effective as Amiodarone" will have effects on the ECG and would need monitoring by a cardiologist or EP - not something to try on your own, I think. But worth investigating?

[Vonnegut]

I suggest perhaps taking 100mg twice daily (as I did before successfully reducing the first dose of the day to 50mg) and then you can still take a further 100mg should an episode of AF occur, as a PIP, without exceeding the 300mg maximum daily dose. When I needed to do that once, it stopped the episode in an hour! Of course, we know we are all different but hope it works for you.

[Deskford in reply to Vonnegut]

Hi thanks, must admit my thinking was on similar lines to yourself. I have a review coming up shortly and unless my usual tests suggest otherwise will strongly push for this whilst I try and sort out an ablation asap.

[Vonnegut in reply to Deskford]

Good luck with whatever you go for!

[Deskford in reply to Vonnegut]

Thank you, all the best to you.

[Vonnegut in reply to Deskford]

And to you, too!

[doodle68]

Hi Deskford, I would prod your EP regularly about having an ablation. I elected to go further afield after waiting 8 months for an ablation when my AF rapidly progressed and had become unbearable with an uncontrollable rapid heart rate and continuous breathlessness. I was accepted for an 'at short notice' ablation some distance away in Coventry . They were using a private hospital so many days a week to get cases through at speed ,I got the luxury of a private room too . My follow ups were local .

[Deskford in reply to doodle68]

Hi, thanks for your advice. I really do need to push harder for an ablation as it’s becoming clearer that drugs alone are having only limited success. My local hospital is quoting 35 week waiting list, unfortunately, so I need to see if there is any flex in the system to go elsewhere.

[Nightmare2]

you must always be guided by your consultant, no two people are alike, and if you have PAF, yu do seem to be having AF to my mine anyway too close together, I have PAF, and most months i can get away with just one episode. 2 x bisorol and sit quietly and in an half hour ot and hour back to normal 57 h.r.

But i never rest on my laurels, any time, with AF things can turn on a sixpence, now they are suspecting a larger heart with me from Xray, but yet to be detrmined with bloods. with AF, we have to accept we ar lucky if can control on meds, as all the Ablations and other things they do, my own Cnsultant has told me, he will only do ivasive like these things if the meds fail. With AF we all rather live ona bit of tenterhooks, but are not alone, Sure beats having cancer anyday to my mind, is how i look at life now.