More episodes in first week of daily Flecainide?

[BigArnie]

I was diagnosed with paroxysmal atrial fibrillation 16 months ago and have been using a PIP Flecainide approach. As my episodes were starting to get more frequent (4-5 per month) and of longer duration, my cardiologist recommended 2 x 50mg of Flecainide daily, using 50mg as a PIP if an episode occurred.

6 days into that regime I have now had 4 episodes already, 3 of which I terminated very quickly in less than an hour (a couple in less than 30 minutes) and one in around 2 hours (all using the PIP). Previously my episodes lasted around 4-8 hours.

I am happy (well, relatively speaking...) with the faster terminations, but 4 episodes in 6 days (and in fact it is 4 episodes in 2 days as the first 4 days were fine) is completely unprecedented for me. Is this a plausible side effect as the Flecainide builds up in the body or should I be concerned?

[CDreamer]

Something to talk over with your doctor.

My own experience - Flecainide causes affects. It may work for a while but anything that can cure also has the potential to cause and Flecainide is a drug known to cause as well as cure Arrythmias which is why it needs to be carefully monitored.

Do you own a Kardia and take your own ECGs? If so it may be worth recording your episodes and sending your doctor the traces before you speak go them.

It is a ‘dirty’ drug ie: what the US calls a black box drug so is considered toxic, not as toxic as Amiodarone, but will have affects with some people whilst others will tolerate it very well, we all react very differently. Some people are able to metabolise drugs better than others and how you metabolise will also influence the outcomes.

Best wishes.

[BigArnie in reply to CDreamer]

Thanks CDreamer. Yes, I have decided to start with my GP and see what she thinks. It's tricky, because my sense from this forum and elsewhere (including a doctor on justanswer.com) is that 50mg x 2 is not enough for most people (and my frame is not small, although by no means obese!) and that 75/100/150 x 2 can work wonderfully well for some. Of course, I don't know whether I fall into one camp or the other - or possibly have my very own unique tent!

[Hidden in reply to BigArnie]

I have lost weight, exercise more and take 100 mg morning and evening. Life’s good at the moment!

[BigArnie in reply to Hidden]

Good to hear Hylda!

[CDreamer in reply to BigArnie]

In the UK GPs rarely have the training and expertise to comment on these drugs and mostly refer to secondary care ie:- your specialist,. This may mean a delay as they write to your specialist and await a reply. It really depends upon your GP and their training.

[SpritzerAce]

Hi there! Sorry that you are experiencing that. I used to take Flecainide with Bisoporol for my Paroxysmal AF but unfortunately Flec induces my AF. I had more flutters episodes which led to AF when I was on it. My EP changed it to Sotalol and that worked better for me. I had my ablation recently and is currently off all anti arrhythmic drugs. May be it is worthwhile to check back with your EP. All the best.

[BigArnie in reply to SpritzerAce]

Thank you. I spoke with my GP and he suggested to give the Flecainide a bit longer as it's only been 6 days. However if the episodes keep coming at the recent rate then I shall certainly be asking the question of my cardiologist sooner rather than later - as you know, it ain't fun!

[Buffafly]

Are you taking Flecainide alone? I ask because it can cause flutter if not paired with a rate control drug.

[BigArnie in reply to Buffafly]

Actually no and I am wondering if I should raise this with the cardiologist. 3 short episode today already and I am hoping he will call me, although getting late here.

[Jans5]

I had to stop taking flecanide as it was pro arhythmic for me. I haven't taken anything for 3 years now but I'm lucky in that apart from being able to feel when I'm in afib I'm pretty much asymptomatic and can carry on relatively normally till the episodes over. Everybody seems to have different experiences and it's trial and error what works for you, eg I cut out coffee as was suggested for 3 years with no effect only to find when I reintroduced coffee it actually reduced the length of my episodes. Maintaining a healthy lifestyle without being over zealous about it works for me. This year my afib burden has reduced by 2 thirds and I've no idea why!

[BigArnie in reply to Jans5]

Hi Jans5, what happened to you when you took the Flec. I am 8 days in on 50mg x 2 per day and I seem to be having more episodes (2 per day versus 1-2 per week) yet the extra 50mg PIP terminates them really quickly. So I actually may have less time in AFib, but feel worse.. just hoping that this might just be my body still adapting and/or 2x100mg might work if the current dose doesn’t.

[Jans5 in reply to BigArnie]

Hi BigArnie, I only ever took them as a PIP. When I first started taking them they terminated my afib within an hour and it was great, they didn't seem to increase the number of episodes and cut down the time I was in afib. However after taking only perhaps 5 or 6 they would take 4hrs to work which as my episodes at that time were on average only 5 hrs it's wasn't worth the benefit on top of that I was getting additional thumping beats and was more symptomatic. I was told by my consultant to stop taking them immediately. I was told that the meds you take for af are just about improving your quality of life and therefore if you think your medication is negatively affecting your episodes maybe you need a rethink. It's trial and error to find out what works for you and what you're happy with. When you get it sorted in your head it's easier to cope with and not let it control your life. I'm 62 and have had afib for around 10 years now although was only diagnosed around 5 years ago, it took a while to know what worked for me. Hope you get sorted soon

[BigArnie in reply to Jans5]

Thanks that is really helpful. Actually your experience with Flec PIP was very similar to mine soon after I was diagnosed. I too stopped using it and tried lifestyle changes, which initially worked, but then didn’t for some reason. Hence I was persuaded to try the daily dosage, which I know works fantastically well for some folks. Not for me yet, but fingers crossed. Latest twist for me is I’ve had two 1-2 minute mini episodes today that just self terminate if I sit quietly. Never experienced this before, so not sure if it’s a good or bad sign!

[SteM]

I have taken Flecainide now for 12 years 100mg twice a day and with Bisoprolol for the last 5 years. Episodes were around 1 every 2 weeks before the Flecainide and only one episode in that time whilst on the drug. Best thing that has happened to me.

[BigArnie in reply to SteM]

This is for sure what I want! So far not so good, but hoping my body will adapt soon...

[Cookie24]

Flecainide did not work for me. Propafenone did even though my EP said it is in the same class of drugs.

[BigArnie]

Out of interest, when you say it didn’t work, what happened when you tried it?

[Peacockmumma]

I didn’t think it worked for me so they upped it to 100x2 daily..was great for a while but not sure if it’s still working. I take magnesium taurate daily too as recommended by the York cardiologist (on YouTube);..was sure that helped or it may have been the higher dose of flecainide. Who knows