coming off flecanide

[Rugby422]

can I stop flecanide safely?

I have been on it 20 years but it seems to actually cause an Afib episode lately.

[bean_counter27]

"Do not stop taking abruptly without medical advice"

This warning is typed on the Pharmacist's label for my Flecainide.

Please note we are all different. Even if someone says it was okay for them, it doesn't mean it would be okay for you. Given your concerns with Flecainide, you should consult with your GP, cardiologist or EP ASAP.

[petmice in reply to bean_counter27]

Also consult your pharmacist because they know so much about the details of your medications. My EP said I could discontinue both Metoprolol and Flecainide, one of them (I can't remember which) cold turkey. Thankfully I consulted my pharmacist first, because they recommended a slower, more gradual discontinuation. I'm glad I consulted with the pharmacist first!

[Raptorfan in reply to bean_counter27]

I doubt that it causes A-Fib. Could it be that after all that time could it be that it lost its effectiveness?

[Dangerousdriver in reply to Raptorfan]

Actually you are incorrect, it can cause A-Fib to worsen as it did me. I was taken off of it as a result.

[CDreamer]

I had to stop suddenly and whilst it was a bit shaky for a while, nothing horrendous happened. You really do need to talk to your specialist as whilst Flecainide can cause arrhythmias it could be that your AF has now become progressive and the Flecainide is just not repressing it so no longer useful.

[bean_counter27 in reply to CDreamer]

Or still useful but not as effective at preventing episodes. I take Flecainide and still have AF episodes but they a generally much shorter and less frequent.

[CDreamer in reply to bean_counter27]

In my case it was harming, not useful at all.

[bean_counter27 in reply to CDreamer]

Doesn't mean it won't still be useful for Rugby422 though

[BobD Volunteer]

You should discuss with your arrhythmia team.

[jeanjeannie50]

I took Flecainide alongside a small dose of Metoprolol for many years, then on a visit to a cardiologist he looked at my ECG and said, "Well you can stop the Flecainide because it looks as though it's causing more harm than good". I stopped taking it straight away, felt so much better and had more energy.

Unfortunately, we forum members would be foolish to recommend anyone reducing, or stopping their medication as AF presents itself in many different ways e.g. rate of rhythm, strength of beat etc. You make no mention of the strength of Flec you're on now or give any give details of other pills you may take.

Initially I would make an appointment to see your GP asap and explain that you think Flec is making your AF worse.

Let us know what your GP says please and good luck in finding out the best thing to do.

Jean

[Lavelle1 in reply to jeanjeannie50]

Been on 2.5mg of bisoprolol for over a year now (sotalol before that). No issues with but it probably slows me down and I’d rather not take medication. So cardiologist last week says just stop taking it if you want. Quandary.

[Finvola]

Flecainide is a very powerful drug and I wouldn't mess with it at all without consulting at least a GP, preferably a cardiologist. It may be that your AF has progressed which makes the dose you are taking seem less effective.

[pip_pip]

Its not the Flec that has changed , its your AF, the pattern and behaviour . The flec might well be contraindicative which is it's drawback at times. I had that but at the initial time of first (and last) precribing. I suppose that can happen any time...

[secondtry]

Would be interested to know why you thought it was an AF trigger.

I have been on 200mgs Flecainide successfully for 11 years and would definitely seek my cardiologist's advice before a decision on reducing it; I would be advocating strongly to reduce my dose very slowly unless I was certain it was the trigger.

[Pommerania78 in reply to secondtry]

In the 11 years that you have been on Flecainide, how often, and how many times, has Afib occurred? I have been taking it for about four months now and I have lost 58 pounds (22 percent of my body weight) and improved greatly my diet, sleeping, etc., and I am interested in how long Flecainide remains effective, etc. Thanks for any comments you might have.

[secondtry in reply to Pommerania78]

Probably the record holder here is someone who has been taking Flecainide for 30+ years. I am a relative newcomer at 11 years 😆. Up until a year ago, I had only two half hour AF episodes since starting Flecainide 220mgs. In the last year I have had two more episodes, maybe due to letting my Lifestyle changes slip a bit or of course the effectiveness of the Flecainide......BEWARE complacency!

[Pommerania78 in reply to secondtry]

How long were the episodes? Thanks.

[secondtry in reply to Pommerania78]

All under one hour.

[Pommerania78 in reply to secondtry]

If you don't mind my asking, what were lifestyle changes that you let slip? Thanks again.

[secondtry in reply to Pommerania78]

Stress, too much sugar/gluten and stopping CoQ10 supplement are my best guesses but who knows with AF 😁.

[patience12 in reply to secondtry]

I think you might be right. On my not at all scientifically proven opinion both my afib started after massive sugar intakes and as I’m diabetic I think it triggered episodes . For which I feel a complete numpty as I write this as it seems obvious to avoid . 🙄

I like the comment above ‘avoid complacency!’ So, so easy to slip onto because we are all on a very long journey. I am having to learn that slowly wind the race I think.

[secondtry in reply to patience12]

With sugar and other lifestyle choices, I hold the opinion that these are in most cases not triggers on their own but contributory factors. Therefore one person with excellent other choices can get away with more sugar than somebody due to poor choices who is already borderline triggered.

(I hope that makes sense 🤔)

[patience12 in reply to secondtry]

Yea for sure . My diabetes is generally ( except for the times mentioned. ) well controlled but I know I will never be able to respond to sugar the same as someone else who maybe isn’t diabetic. And even then everyone responds differently. So… as I say I think both my events triggered in this way…. Or it was the straw! But we’ll never know for certain.

It’s like cardiologist told me no alcohol at all ever. However I didn’t drink at all and still got second episode. But worth avoiding anyway for me as it was never a big thing for me.

[Mcopt]

I have been on flecainide 100mg bd for about 18 months now, it stopped almost immediately the 5 week episode of AF I was having at the time and has kept it completely away so far. Last year I discussed coming off flecainide with my cardiologist and going to pip regime for which he gave me instructions on dosage etc, the plan is to taper my current full time dosage down to 50mg bd for a week or 2 then stop and see. I have not started the tapering down yet as I believe stress is my primary trigger for AF and at the moment life is perhaps a little more stressful than I want but hopefully soon I will start coming off it full time. As a lot of people have said what is right for one may not be for another with AF, I would also be wary of asking my GP as in my experience unless you are lucky most GPs really do not have much idea about AF or treatment regimes.

[AfibSufferer]

Seems unlikely Flecainide would suddenly start causing AF. But it's not unusual for AF breakthrough episodes to start occurring after a number of years which may need a slightly increased dose to keep them under control. If you do decide to try reducing dosage I'd taper it off slowly over a number of months. I did this after ablation and found that each time I reduced my ectopics would rise and it took a week or 2 to settle before reducing again after about a month. But we're all different. I wouldn't do anything without consulting with your EP or GP first.

[Vonnegut]

That doesn’t seem likely to me though I have taken it regularly for far less time than you. The only time I had an episode of AF since I’ve been on regular Flecainide was when I must have been infected with covid - no other symptoms as I’ve posted here before but a positive test result, ended after a few hours with an extra pill. Might it be that you have another problem or that the make of the drug you are taking is different and not as effective as most seem to be for me?

[Singwell]

I agree with others here who suggest it's your pattern of AF that has changed , not the Flecainide. If you're taking it regularly, how can you tell? Either way you need medical advice - perhaps a change of meds, or a different dose. Make a note of every incident- when and how long - and discuss with a cardiologist as soon as you can.

[HuntsvilleAL]

I have been on Flecanide for more than 40 years. Off and on and various doses over the years between ablations. Now on 50 once a day. Since AFib is deemed a progressive condition, it is likely that your condition is changing. You may need a dose adjustment or another option. That has been the case with me.

[Pommerania78 in reply to HuntsvilleAL]

If the Flecainide is working, why did you need an ablation? Thanks.

[HuntsvilleAL in reply to Pommerania78]

Getting breakthrough AFib over the years. Could not tolerate higher doses of the drug. Can’t tolerate beta blockers. Diagnosed at 30 with AFib, now 74. I am now an expert on this condition after all these years. I have been experimented on by the best. Currently stable, but no guarantees. A good EP will tell you hopeful for a lasting fix, but no cure is guaranteed. Same with any of the drugs. Good news is science is getting better and better on this condition.

.

[Pommerania78 in reply to HuntsvilleAL]

What do you recommend that the individual can and should do for himself, leaving medicine and procedures aside for the moment? Thanks.

[patience12 in reply to Pommerania78]

Others may have different views to offer but here’s my penny : my cardiologist said I should read about fat around the heart ie if you’re overweight, ( sadly, yep for me) and/or have visceral fat (yep) which means it will be around the heart it can contribute to AF. I did find a couple of papers . Trying to remember details but it was along lines of : Fat was long thought to be an inactive substance but as they discover more it actually pumps out inflammatory substances and if that’s around your heart it won’t help matters Can’t remember if there was a literal cause and effect as v hard to prove categorically but think conclusion was that fat around heart isn’t good for AF. Implicated in causation? So plan is to lose excess weight for myself. For me also : diabetes- so sugar surges also contribute to a host of horrible things and over time damage cells. So a healthy diet needed.

But the other depressing (sorry) thing I read was weigh fluctuation isn’t good either. And I did fluctuate a lot (30lbs lost then gained in 18 months ) before last AF episode .

So now…. I am trying to lose weight slowly and in a way I can live with for rest of life.

Sorry for long reply. These are just things i finding important on my AF journey. Others may have other inputs . Good luck.

oh … and exercise of course! Cardiologist said need to keep heart healthy so do whatever I was doing before : swimming , cycling etc ….Of course arthritic knees don’t help 🤦‍♀️ hah.

[Pommerania78 in reply to patience12]

Thank you very much for your comments. A couple of people's teachings about health that you should investigate are: Dr. Joel Wallach and Doug Kaufmann. If you think of anything else, please let me know.

[HuntsvilleAL in reply to Pommerania78]

I have no other pearls of wisdom to offer. Many folks on this blog have offered various insights. AFib is a complicated condition and every person’s journey is different. Some meds work well for some and not for others. Life style choices have a place. For me, the experts I consulted with feel mine is a genetic since I was quite young when diagnosed. I do what I can to control what I can control health wise. My latest EP told me that I will drive my self nuts to try and figure out why I have this. He also told me that I will likely die with this, not from it. Keep reading and keep up with the clinical trials, research, etc. live your life. I have been very blessed to have good care, an active life and a fulfilling career. I have not let this stop me from doing what I want or wanted to do. My two cents worth.

[BaileyC57]

I was on that for a year and a half , they took me off because I was getting a thickness around my heart ! They took me off immediately and put me on Metropolo!

[BobsBeat]

Check with your EP or Cardiologist. It's likely the AF has progressed and the Flec is not controlling it as well. It could also be that you are getting AFlutter, which can happen with Flec, as Flec can be pro-arrhythmic. Flec is typically prescribed with a beta blocker to reduce the pro-arrhythmic chances.

[Budken]

I have been taking flecainide since 2011 with no problems. Originally I took it with Metroprolol, and after about five years, my afib outbreaks became more numerous. So my Cardiologist doubled my dosage to 100mg twice daily. A new Cardiologist in a new town, told me he thought it was the Metroprolol that was causing my problems, and took me off it. It was a roller coaster ride, but once I was off it, my outbreaks stopped completely as well as episodes of PVC's. Then when I moved here to Germany, my Cardologist said the thought I could stop the flecainide as well. I did for about six months, but then I had an outbreak that the "pill in the pocket" did not work. It eventually stopped on it's own after abut twelve hours. Now I take half the dose, and so far after a year, have had no outbreaks.

[tomtom222 in reply to Budken]

Hello Budken,

Could you please clarify how the beta blocker was identified as the culprit for the AFib episodes?

[Budken in reply to tomtom222]

It wasn't it, was simply my Cardiologists opinion. ( he retired a year ago after fifty some years )Trial and error. It was his experience, that Met oprololI sometimes caused irregular heartbeats. I had a rough time weaning off of it, but once I did. It was smooth sailing, to this day.

[Raptorfan]

So far, thanks G-d it has been ok. Tht's why my doctor combined it with bisoprolol