Flecainide

[SteveA]

I've got 100mg Flecainide tablets I take as a pip if I go into afib.  I normally have an episode once or twice a month and when I take the Flecainide I normally go back into rhythm within 3 hours, however I can normally feel the afib coming on as I get a few flutters several times a minute in the few hours running up to going into afib.  My question is do people take their Flecainide before they go into afib to prevent a full blown episode? Or should I be waiting to see if I go into afib first? At the moment I do the latter

[BobD Volunteer]

Since many people take Flecainide full time  I would think that the judgement on when the event starts is really up to you. I know what I would do but obviously can't advise. What dose of Flecainide were you told to take?  For the brief period I had it as PIP I was told to take 300mg and then no more for 24 hours.

[SteveA in reply to BobD]

Thanks bob, I've just made the decision myself to take one. I was told to take a single 100mg tablet as a pip so I guess it's a pretty low dosage compared to some, so far I have only taken one when I have got into afib and it normally takes about 2/3 hours to convert.  I am starting to recognise the warning signs, i normally have several runs of ectopics in the hours before I go into afib.  In the last hour they have been coming every minute or so, it will be an interesting experiment for me to see if taking the flec at this stage will stop it in its track. Fingers crossed! 

Can I ask, how come some people are against the use of Flecainide ? I've read people saying its a 'dirty drug' and saying things like they wouldn't give it to a dog!?  Even a doctor friend of mine said, it's a pretty serious drug! 

[BobD Volunteer in reply to SteveA]

Each to their own Steve. If something helps you feel better so what. If it makes you feel worse then you do not take it. My EP switched me to propafanone when I first saw him so I was only on flec about three months as pip.  Don't take any drugs for AF now since my last ablation in 2009 but I still get loads of ectopics.

[CDreamer in reply to SteveA]

All drugs are 'serious' but Flecainide is because toxins can build in the body and so it is important to have blood tests every 6 months or so.

It can also suppress the immune system, especially in the nervous system which can be serious if you then have certain virus infections such as Lyme's - several people on this site who have take Flec daily for longer periods of time have had serious side effects.  Flec used to be used as a treatment for MS precisely because of this effect.  Cardiologist and EPs may not know of this effect but talk to a neurologist and they will!

If you are taking as an occassional PIP you should be OK but do treat it with respect.

I was told to take 300mg at the onset of AF - not the precursors because they don't always mean you flip into AF.  I used it successfully for about 7 years, my problems began when I was taking the maximum dose daily.

[Beta44 in reply to SteveA]

Different people clearly have different reactions. I took Flecainide for 20 years with no serious problems. Eventually it stopped working for me so I had an ablation so I don't have to take it any more. Never had any blood tests over the 20 years so either doctors negligent or not necessary. 

Peter

[SteveA in reply to Beta44]

I also have no noticeable side effects, it just seems to have a benefit for me when I take it.  I was started on warfarin 2 months ago and they are trying to stabilise my INR with a view to doing an ablation this year. So fingers crossed the procedure will work for me as it did for you.

[Beta44 in reply to SteveA]

Good luck with the ablation. Although I had no problems with Flecainide I was still very pleased to see the back of it. There is a slight chance that it can cause serious arrhythmia of thr ventricles so not to be taken lightly. 

[Hidden]

I found flecainide to be very useful as PIP. Side effects vary among users, but AF episodes can really put a crimp in your lifestyle and safety. 

[SteveA]

The Flecainide has done the trick and seems to have stopped the flutters in there track, my hearts beating nice and steady with no ectopics!

[Drounding]

I get symptoms just like you're describing. Before AF I get odd missed and irregular beats.  I also had the same dilemma of when to take my 50mg flecainide pip.

I let myself be guided by experience and take the pip early before I expect to go into AF. 

Recognising this early certainly works for me. I don't get any side effects either. 

[jeanjeannie50]

I started taking Flecainide as a pill in the pocket last September after a week in hospital with tachycardia. I thought it was a miracle drug and the first few times I used it the event halted. After a couple of months I noticed an increase in attacks, before taking Flec I'd get an attack every 4 to 6 weeks, but now I was getting several a week. Mid last December I started taking 2 X 50mg Flec daily  and once again felt really well, again I thought it a miracle drug and felt better than I had for years. However, on 5th February I went into atrial flutter, still have it now and I'm waiting to have a cardioversion. Despite increasing my dosage and trying all sorts of combinations with the drugs I'm stuck with a fast pulse.

What I'm wondering is does the heart become used to the Flec.

I have to say that Flec has kept my heart rate lower than Amiodarone or any other drug ever has, but I've never had an attack go on this long. A little part of me wonders whether Flec is the cause of my AF now. Time will tell I guess.

Jean

[MS444 in reply to jeanjeannie50]

I used Flecainide from January 2015 to March 2016. I started after AF frequency increased to as May as 3 times a week. I used it PIP for a while. Longest I lasted was 18 days in March 2015. I tried taking is 100 x 2 and still got AF after 6 days. Was told to take 25mg metoprolol with 100mg Flecainide as PIP. Sometimes had to take a second 100mg flec 4 hours later. Longest it lasted was 5 hours and often only 1 or 2. A few times I got flutter. One time got a weird arrhythmia that took 24 hours to stop even with Max flec dosage. Finally worked out that 25mg x 2 daily could stop the AF. I went for a month without AF in jan and feb 2016. Stopped In between and had 3 episodes in one week before starting 25 x 2 again.

So I think Flecainide is a bad drug. Very hard to get the dosage right and it may make AF worse. I felt bad trying to use it. Had an ablation on 21 March. Now no AF and no medication.

[Rellim296]

Flecainide can be a bit enthusiastic and, in time, it does things you'd rather it didn't do along with controlling the AF.  I took it for two years without any problem but then noticed sensation in my feet was diminishing and something was affecting my sense of taste.  My GP and an ENT consultant pointed the finger at flecainide.  I took it for three and a half years and wish I had been able to give it up earlier than I did.  I was on 300mgs a day for a few months and I'm really pleased I don't need it now. My feeling is the less you take of it the better, although it works wonderfully well.

Work out what works best for you as regards a PIP.  I take 50mgs if I wake with AF and another 50mgs if needed an hour later.  AF frequently stops a few minutes after I've taken the second 50mgs.  Sometimes I take 100mgs right away. 

[Bob56]

I was first diagnosed with AF 25 years ago and was started on Flecainide 50mg twice a day. My dose went up and down ( never more than 200mg in a day) depending on how the AF manifested itselF. For many years it did its job very well and kept my episodes down to 2 or 3 times a year, but eventually my condition progressed and it became less  and less effective. I had an ablation 10 months ago with Flecainide only now prescribed as a PIP. I can't advise you on how much and when you might take it, only tell you about my experience, which overall was pretty positive.. I had no side effects to speak of and the long term use doesn't seem to have done me any harm. As always with these things it has to be a cost benefit analysis. On the one hand I have taken medication which has had adverse side effects and I  have chopped and changed ( under doctor's advice) to find something which works for me. On the other, having a drug like Flecainide helping to control my AF for a very long time gave me the breathing space to see procedures like ablations become safer and more precise. Good luck with your own journey.

[Hidden]

I believe if you have Lone PAF and reasonably young (up to say 70) Flecainide has a lot going for it; research has shown in other circumstances it can do more harm than good. At 62, I have been on 200mg/day now for 2 years with no problems but know I am pushing my luck and plan to start reducing the dose in June.

Re your experience Steve, I would be taking all other lifestyle/supplement/diet steps to reduce the regularity of AF episodes and talking to your cardiologist about taking a daily low dose (say 100mg). I appreciate PIP is more appealing (and that is how I started) but you need to stop it as AF begets more AF plus my cardio believes a regular dose of Flecainide is better for stabilisation than a heavyish shot of it every so often.

Hope something in there helps.

[eleanor--1941]

Hello Steve,

I also have Paroxysmal AF.I have been taking Flecainide as Pip since 2012,I am prescribed 300mg when I go into AF.like you I know when I am going to have an episode,the last hour or so of the evening I come over

With a different type of tiredness and my face flushes for a few seconds,and every time I wake either going into it or in it,I always give it 10mins,then take Pip.Like you it works a treat,40mins to 4hrs I am back to normal and raring to go again.

Have not had an episode since a year past March,fingers crossed,a break from it is fantastic,as it can be every other week or month.Thank goodness for Pip.

Keep well Steven.

Best Wishes,

Eleanor.

[Barry24]

Hi Steve,

May l ask if you take a beta-blocker daily? I am under the impression that the two medications should be taken in conjunction and not Flecainide by itself.

Maybe BobD can confirm that please.

Kind Regards

Barry

[SteveA in reply to Barry24]

Hi Barry, yes on 1.25 mg of bisoproprolol daily and under advise of my EP I take another tablet with my Flecainide when I go into afib if my heart rate shoots up (it's doesn't always when I go into af)

[barbara2 in reply to Barry24]

My internist told me that Flecainide should not be taken by itself because of dangerous side effects.  I take 50 mg of Metoprolol 1 x daily (beta-blocker) and 50 mg of Flecainide 2 x daily.  

[Barry24]

Hi Steve,

Many thanks for coming back so quickly with your answer.

Best Wishes

Barry