Stopping Flecainide

[karrog]

Had cryo ablation in 2014 and over the past couple years started getting occasional afib episodes esp after exertion. Cardiologist put me on flec, 50 mg bid, which reduced the episodes. Also was advised to use 100 mg as pip in event of breakthroughs.About a year ago the episodes increased and was told to increase flec to 100 mg. Shortly afterwards the frequency actually increased and sure enough the instruction was to increase flec to the max of 150 mg bid. I was looking at that big pill and just decided the heck with it. Not gonna happen. Just quit altogether.

That was in March. I've been in NSR ever since. I check the kardia daily, sometimes more. I was highly symptomatic when in afib, chaotic HR, frequent urination etc. Just using kardia for reassurance. No question the beast has gone, or at least in hibernation. I'll tell my cardiologist when I have my regular checkup and I'm very curious as to what he'll say.

PS In no way am I advocating stopping Flecainide. This could be a huge one-off. And afib could return at any time

[nikonBlue]

Hi there,

I had my ablation in March this year and partly because the Flacainide seemed to be 'encouraging' the episodes of my AF. One of the side effects listed is that it may cause palpitations! Sure did for me. Crazy eh?

However, a few days after the procedure I was hit with terrifying flutters and could not cope and when I called my gp to ask what to do it was an ambulance job even though I told them I'd recently had the ablation and that I just wanted reassurance that this was 'normal'. The paramedics admitted that I probably knew more about the AF than they did and so phoned a cardiologist at the local hospital and would you believe I was instructed that I should have been kept on the Flecainide for a month after the ablation (150 twice daily was the dose I was on for a few years). It took a few hours on that occasion for the meds to kick in but what a relief when if all calmed down.

Strange how the same medication seemed to make things worse one time then relieved the awful symptoms on another occasion. It's a mystery indeed!

I no longer take the flecainide at all and I too am not promoting to just stop. After all we are all different and react differently but as with all medication, sometimes the meds make things worse and we need to decide how it affects our QOL.

Stay well,

Blue

[Popepaul]

A somewhat surprising but pleasant outcome for you. Almost counter intuitive. It just goes to show how nuanced/idiosyncratic Afib can be. I hope the trajectory towards good health continues.Regards.

[secondtry]

If it works stick with it there are so many ways out of the AF maze.

[dmac4646]

its a pretty powerful drug , it can indeed cause problems which is why it’s usually taken with a Beta Blocker.

[OzJames]

I’d be interested to know when you were taking it did they also prescribe a beta blocker which lessens risks and side effects of Flecainide

[karrog in reply to OzJames]

Yes, 5mg of Bystolic. Also Eliquis

[OzJames in reply to karrog]

Yes and I’ve been on off Flecainide only when I’m in AF and for a short period after retaining Sinus. It always makes me feel odd like the feeling of tapping fingers about an hour after taking it. Not sure whether it has ever done much for me.

[En85]

I read most papers available online on the trials and studies on Flecainide and I find absurd that a drug that it's on the market since over 40 years, it's so little understood. It was prescribed to me as just another pill, but it made me very unwell, and personally I don't think there is enough supervision in the UK when it's given to patients. I've been on and off it, but now I decided (together with my second cardiologist) to not take it anymore if not as pill in the pocket in case of episode. I feel so much better, and my heart beat is the same if not better. I think for the future, I'm not taking any drug ever again unless the positive effect is actually clearly visible on me. This is because all the meds have side effects and if there is no clear advantage in taking them, then they are not worth it. I'm not going to take something because "it maybe helps", either works or not, if they think it works I want the proof

[karrog in reply to En85]

Too many doctors are comfortable staying in a rut, created over many years of prescribing the same things for the same illnesses. There are several studies, some completed and some ongoing, regarding afib. One in particular indicated that with some people under certain conditions, flec can be pro-arrthymic. I don't know but it's possible that was the case in my situation.

Same thing with Eliquis and other DOACs. If a person has occasional episodes do they need to take an anticoagulant every day? Most doctors will say yes. But there are potentially serious consequences including brain bleeds. Taking a DOAC as a pip upon onset of afib in lieu of taking it daily needs to be more thoroughly studied. There is at least one study that indicates it acts fast enough to prevent a stroke.

[En85 in reply to karrog]

Since this post I heard from another cardiologist (3rd one) confirming I shouldn't be on Flecainide and if Afib comes back and becomes a problem, at my age I should go for ablation without even thinking about it, basically he said you don't put people in their 30s on meds for life unless there is no other choice, this all makes sense to me. I think my first cardiologist just treated me like his usual patient with a short life span ahead. One size doesn't fit all, and it's hard to find a doctor that wants to make the effort and look at each picture in its unicity.

[Gloria2023]

I am almost 3 months post ablation and am going off Flecainide soon. My EP said I can stop immediately but I prefer weaning off gradually. They have not given me any idea how to slowly decrease my dose. I’m only on 50 mg bid.