Stopping Flecainide : I’ve decided to... - Atrial Fibrillati...

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Stopping Flecainide

Jmbrph profile image
28 Replies

I’ve decided to stop Flecainide since I haven’t had an AFib episode in 5 months. I’m staying on Xarelto, of course, so what’s the harm? I don’t like the long term effects of being on Flecainide.

Has anyone else stopped their anti arrhythmic to test whether they no longer suffer from AFib?

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Jmbrph profile image
Jmbrph
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28 Replies

What am I supposed to say...? I regularly have AF bouts at night, during 10+ years, and have not yet started with my Flecainide. lol... Life long consuming of the medication is good for the Seller and not good for the Buyer. If in doubt, whatever dose you are on, try to cut it down, to as low level as possible, but do not stop it as not to regret it later. So, you will have both results - you will cut the consumption of the medication and still feel protected.

BTW, AF is a condition where the medicine is short with the knowledge. Somebody has lately reported about returning from "permanent AF" into NSR, meaning that it IS POSSIBLE. The conclusion? Permanent AF exists only because the medicine has not sufficient knowledge. Can you imagine, what else they do not know about,,,?

TheGipper profile image
TheGipper in reply to

I got put on nebivolol when I went to a cardiologist last year... didn't even know what it was.

Now I DID think something was wrong with my heart since, for two weeks I felt ABSOLUTELY exhausted.

But, my pulse was 72 and blood pressure 11/7.

Year goes bye, I can't exercise worth CRAP, get tired easily. .. one night, before sleep, I have a good meal, a large coffee (helps me sleep) and all of a sudden I FEEL strange, can't take my pulse, out of breath.

I go to sleep...wake up the same. Call a friend doctor, he says "go to my hospital someone will do an EKG". DIAGNOSIS A-FIB (50-140 min/max) .

They give me some drugs and send me home. Fibs stop a few hours later.

Now cardiologist adds a thinner AND propafenone. So now I have both nebivolol and propafenone, when I try to exercise my heart rate won't go over 102bpm and doc says I have to stay on ALL these meds for the rest of my life.

For one (maybe two since last year MIGHT have also been an incident)...

Can't stand it on these meds.

CDreamer profile image
CDreamer in reply to TheGipper

As a matter of interest - did you ever consider ablation? I would question your cardiologist for the need to stay on those drugs if you don’t have frequent AF.

The anticoagulant, doesn’t thin the blood, is a prophalactic against stroke risk so I really wouldn’t want to stop that ever. The Nevivolol is the med that controls your HR and rate control is sensible if you have a high HR in AF when you exercise.

We have talked about a book called the AFib Cure by Dr John Day quite a lot. If you want to know more about what helps AF and what doesn’t I would strongly recommend.

rosyG profile image
rosyG in reply to

Permanent AF just means both patient and doctor have decided none of the r treatments are working so no further attempts will be made to revert to NSR. Of course it can happen by itself even if unlikely

meadfoot profile image
meadfoot

I had to stop fleciainde and atenolol plus rivaroxaban ahead of an EP study after taking flecainide twice daily for a couple of years. I was unnerved to stop it but as i had been directed to do so by my nee EP i followed his instructions.

After my EP study he said i should then take flecainide in as pill in the pocket and just take it at the onset of an afib or svt event. I came to no harm and am still on that regime four years later. If i need to take it twice daily regularly again i can do. I am guided my Electrophysiologist.

secondtry profile image
secondtry in reply to meadfoot

May I ask how often you have had AF in those four years and is the frequency increasing?

meadfoot profile image
meadfoot in reply to secondtry

I have largely frequent short runs, but had perhaps six bigger events in that time three of which i needed to go to a and e due to intense chest pain, however flecainide pip resolved the events.

CDreamer profile image
CDreamer

It’s obviously your body so your choice but I would do so with the knowledge of your GP and your specialist. You should be monitored on Flecainide and when withdrawing. Some people like to taper down and I don’t know but I think you need some specialist guidance to do that as there could be a kickback from sudden withdrawal.

I stopped Flecainide and Bisoprolol suddenly, cold turkey but that was because of another very urgent issue which meant I could no longer take the drugs and not in the least bit sorry about that as I felt much, much better without them but it took time. I stopped 6 months after ablation, AF returned 3 years later.

As everyone is different it would be rash to try predict what might happen. My own view is that I wish I had never started the drugs as they did me more harm than good but who was to know in advance? They work well for some.

I guess the obvious answer is that you haven’t had any AF because the Flecainide is doing it’s job. It’s entirely up to you whether you take the medication but wouldn’t it be better to discuss it with your Doctor first......

pottypete1 profile image
pottypete1

stopping Flecainide will not prove that you no longer have AF.

I also wonder what long term effects you are concerned about.

In my experience AF does not go away and has an unfortunate tendency to come back when least expected.

Whilst we are all different, for me I have taken Flecainide for decades and even though I have also had a number of ablations I still take Flecainide daily.

I know that once when my doctors suggested stopping Flecainide my AF returned within 3 days.

Pete

Doesn’t the fact that you have been taking Flecainide mean that your post 2 days ago “Can AF cure itself” is nonsense!

Jmbrph profile image
Jmbrph in reply to

Not at all bc I’m stopping Flecainide to see if maybe AFib IS cured.

in reply to Jmbrph

Perhaps I’m missing the point but in your post 2 days ago you were asking if your AF could be cured because you had not experienced an AF episode for over 5 months to which the general response has been unlikely. I don’t think you made any reference to taking Flecainide.

In today’s post you say you are considering stopping taking Flecainide which you are taking to see if your AF has been cured - right so far?

What I am saying is that Flecainide is an arrhythmia drug which is used to keep people with AF in sinus rhythm which means that this is more than likely the only reason why you are currently in rhythm. Therefore, unless you have experienced a nigh miracle you will revert at some stage into AF so your claims of 2 days ago are unusual on the basis you have been on Flecainide during that 5 month period and it is that which has prevented AF episodes.

If I’ve got it wrong I apologise..........

Buffafly profile image
Buffafly in reply to

I didn’t see any claim, I saw a question. Many people are taken off meds some time after their ablation, not knowing until they stop if the ablation was totally successful. Usually that is suggested by the doctor first though. I think ‘nonsense’ is a bit 🧐

in reply to Buffafly

P’raps you are right, certainly about the question v claim bit and I will happily retract the word nonsense and replace it with unusual. I just hope Jmbrph seeks Doctors advice before stopping medication......

jeanjeannie50 profile image
jeanjeannie50

Yes, I've stopped my Flec and beta blockers on two occasions, each time was over summer months and I went 6 months AF free. Unfortunately AF came back each winter. Tried it a third time, but my heart played up. Take meds all the time now.

No one can say yes to what you're doing, you could have a stroke and blame them for encouraging you.

Jean

Singwell profile image
Singwell

I'd say discuss with h your EP or cardiologist so that you can wean off slowly. I found it quite disturbing - it's not just your heart the drug effects - you might get mood swings,nausea etc. I'm currently cutting down on advice following ablation.

KMRobbo profile image
KMRobbo

Yes, but only 3 months after my ablation! I did stop it once pre ablation, when i accidentally missed taking my evening 50mg. I woke up straight into AFIB and ended up in hospital, as by that time in my AFIB journey, it was very difficult to cardiovert me from high rate AFib.

Flecainide is an anti arrhythmic, it's purpose soley is to stop your heart going into arrhythmia. So it's not really a surprise that you have not had an afib attack for 5 months if you have been taking flecainide !

Maggimunro profile image
Maggimunro

I stopped Flecainide, amongst all the other drugs they tried me on because the drugs made me feel worse than the Afib. This may be linked to my original low blood pressure, so the drugs just lowered it down into the 40’s-low 50’s. I felt like a zombie. It is a very personal thing

SuziElley profile image
SuziElley

I don't think I would consider doing this without some form of consultation first....

Diddyd profile image
Diddyd

Just over a year ago I was on a high dose of Fleccainide and had been stable with no AFib for about 8 months . I was also taking a beta blocker. My aim after initial diagnosis with paroxysmal AF was to use lifestyle changes to try and reduce/stop AF as I had heard of people successfully doing this. Then come off the medication. I always consulted the arrythmia nurses first and I gradually reduced the dose of Fleccainide with no episodes of AF until I was completely off it. I also reduced the beta blocker dose but not at the same time so the body had chance to adapt. The nurses advised to remain on a low dose of beta blocker without any Fleccainide on board just in case I needed to use the Fleccainide as a PIP if a future event of AF occurred.

So I was very pleased with myself that I had come off one and lowered the dose of the other😊 However, this only lasted 4 weeks and I began to get very short 1-2 hours of AF a week which gradually got longer and more frequent. So I decided it was silly to use Fleccainide as a PIP when the episodes had become so regular. Again under arrhythmia nurse advice, I went back onto a low dose of Fleccainide which I had to increase. Unfortunately for me, my body then did not like Fleccainide and I suffered with bradycardia which meant I had to stop taking it entirely.

I have been very poorly since then and that is another story. (See previous posts) But I do have an unusual physiology, shape and heart position apparently which has complicated things .

Did my reduction of drugs lead to where I am now? Don’t think so but you can never say that 100%

Do I regret trying to reduce my dose? Absolutely not and would do it again if I was in the same position.

But I must stress that everything I did, I ran past the arrhythmia nurses simply with a phone call BEFORE doing anything to check that I was safe to do so.

That is my experience and everyone is different. I hope it helps you come to a conclusion what to do with the experience of others and medical advice. Good luck.

tunybgur profile image
tunybgur

I cut down on Flec as I hadn't had AF for more than a year and immediately started having episodes of AF.

Resumed Flec but it took months before I was stable out of AF again....we are all different but personally I am now very wary about messing with my meds, esp as I don't suffer any adverse reactions....yet.

secondtry profile image
secondtry in reply to tunybgur

May I ask, how quickly did you cut down on the Flec?

I would love to reduce my 200mgs/day but at present there is insufficient evidence on this Forum that it can work. If I do in the future I will reduce the first 100mgs very very slowly over a year at least and may then stick on 100mgs rather than pushing my luck further. My rationale being my body coped with 200mgs for 7yrs without any real side effects so I will have improved my situation and hedged my bets!

Jmbrph profile image
Jmbrph in reply to secondtry

I stopped over a two week period. I was on 100mg bid so began 50mg bid for a week, them 50mg qd, then 50mg qod, then stopped.

tunybgur profile image
tunybgur in reply to secondtry

I had permanent AF and was prescribed flec. It was an immediate cure, I was so happy such a tiny pill could change my life so quickly!

I was on 50mg twice a day and after 18 months started getting the odd AF attack again. I started taking an extra flec tab to sort these episodes and eventually my Doc increased dosage to 100mg am and 50mg pm, this sorted the problem.

After several months I went back to 2 x 50 as I was worried my flec dosage might have to be continually increased until I was on the max 300mg, then where would I go?

I tried to wean myself off the extra 50 over a period of several months but kept going in and out of AF.

Eventually I gave up and went back to 150mg/day and this has kept me in SR for nearly a year up to today with no relapses at all, I just hope I don't have to increase the dosage again but I've given up the idea of reducing or stopping flec.

This is what works for me but we are all different, I don't know what long term effects flec may have, but it can't be worse than AF which robbed me of all my energy!

Good luck, and I hope my story helps you.

secondtry profile image
secondtry in reply to tunybgur

Thanks for such a detailed reply. It is best to stick to what works for you. However, if you do have AF again my cardiologist favoured an even dose of Flec am & pm, despite my requesting more pm because my episodes were always pm/night - so far he has been right.

tunybgur profile image
tunybgur in reply to secondtry

I think it is important to keep the blood serum levels as constant as possible and so I have my 100mg at about 7am and 50mg at 10pm. Also I make sure I don't consume any food at least and hour either side of taking my pills as advised by the manufacturers....no late night snacking!

Glb1948 profile image
Glb1948

The flecainide is what’s keeping you from having a-fib. You should speak to your doctor before abruptly stopping this drug as it can cause things to get worse. This was on their pamphlet that comes with the med. I am taking flecainide also and so far it has helped tremendously.

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