I've had afib since around the 1st of June, 2023, though I have little or no symptoms.
My cardiologist wants me to try Flecainide. This will necessitate an overnight hospital stay so the can monitor my heart and adjust the dosage.
What has been you experience with this drug?
Thank you.
82 year old male
U.S.
why not cardioversion after trans esophageal ultrasound and propafenone. Any other health issues? Hyperthyroid?
Flecainide was my saviour. Mine was started in hospital after a dreadful episode of supraventricular tachcardia and Afib. My heart rate was 298 bpm I was in horrendous cardiac pain and kept almost passing out every few seconds. Flecainide was administered intravenously.
It worked like magic over a twenty minute period after hours in that horrendous arrhythmia state. I was subsequently given a daily dose of the drug and now use it as pill in the pocket when arrhythmia kicks in.
It works well for many people but not suitable with everyone and it requires a structurally normal heart to be used. My electrophysiologist insists it is used alongside a beta blocker. Best wishes hope it is good for you.
Excuse me, but what dose of Flecainide do you have in your pocket? Do you use Flecainide only when necessary and not as a daily therapy?
I originally had flecainide administered in hospital through intravenous means. I was then given 100mg of flecainide twice a day ongoing to keep me in rhythm. The max dose daily is 300mg definitely no more than that. After several years my electrophysiologist suggested I might like to try taking flecainide on a pill in the pocket basis in other words to use it when I had an arrhythmia episode starting.
He also insists that a daily beta blocker is taken to slow the heart rate which I take every single day without fail never mind whether I need a rhythm control drug such as flecainide or not. A beta blocker to control the heart rate too as I have extremely fast arrhythmias when they kick in.
My EP allows me to medicate myself with flecainide and I can take 50mg or 100mg as pill in the pocket dependant on how bad the episode is. I usually need to take 100mg and if it isnt resolving in an hour or so I can take another 100mg up to a daily max of 300mg. My arrhythmia episodes can be so severe that if flecainide didnt work I would be off to a and e in an ambulance, thats just how my episodes are with excruciating unbearable chest pain and almost passing out ongoing.
If I seem to be having arrhythmia breakthroughs I am allowed to put myself back on daily flecainide. I am lucky in that I have an extremely top notch Electrophysiologist these past eight years who I trust completely. He trusts me to medicate to his instructions and I have six monthly telephone apps with him plus a direct email to send him or his team any ecg readings I think shows anything unusual or new via my kardia monitor. I know I am very fortunate to have the team I have.
Thanks for the answer. I had atrial tachycardia 230 beats per minute. They thought it was AF, but when I went for an electrophysiological examination, they provoked atrial tachycardia. Then they did an ablation on me and I no longer got that, that fast rhythm. However, I have it every day extra heartbeats, the holter showed SVES and VES. I don't have a lot of them, about 70 in 24 hours. But they bother me a lot. It suffocates me when my heart trembles and skips. Cardiologists say it's not dangerous. Since the therapy, I drink Bisoprolol 2.5 mg x 1 day. My cardiologist advises me to increase the dose to 5 mg per day. However, I think if 2.5 mg doesn't help me, why would 5 mg help me? I was under Flecainide therapy for several months, in the first two months it was fine, very little SVES and VES .On the holter in 24 hours, only 3 SVES and 1 VES. The dose was 50 mg in the morning and 50 mg in the evening. But as time went on, I got worse and worse again. I also got off Flecainide. I don't know what to work. I feel bad when I get those skips. I have them every day. My heart ultrasound is good. I am very sad because of my ailments, it interferes with my work and in general.
Its hard going dealing with it all and the ectopic beats make us feel awful. They arent meant to be dangerous but it doesn't feel like then when having them ongoing. I have pauses which make me feel dreadful. I can literally feel my heart pause for several seconds and I feel faint then I gasp and my heart goes really fast then settles back to normal. I hate them and fear every time that my heart wont kick back in again. Not been able to catch any as they dont happen while I am wearing a heart monitor, just my luck. Hope you can manage to cope and find some help.
You described exactly how you feel them as I do. Identical. My heart seems to stop for a few seconds. It's terrible. I'm choking, gasping, as if I'm going to lose consciousness and everything will be fine. It passes.
Bless you, you have my sympathy and empathy. I havent come across anyone before who experiences them exactly the same before. I have felt so isolated with them, scared and not understood. They are woeful. Wishing freedom from them for us both. Best wishes,
I believe that we will get better. I keep hoping that I will find some medicine to eliminate them. Maybe something else in the tunnel affects the heart and that's why we get these ectopies.I live in Sweden and I will let you know if there are any positive results.There must be a solution.
Hopefully.
Flecainide has been a success for me too. I had frequent (ie daily) AF, AFlutter and tachycardia up to 200 bpm. I started Flecainide 2 x 100mg daily over 9 years ago and have had no AF in that time.
I take it with a beta blocker (Nebivolol) and am monitored by my cardiologist every 6 months.
Best wishes with it.
Hello again, I was put on a daily maintenance dose of 50gm x 2 daily after my cardioversion started to falter. It kept me in rhythm for almost a year while I waited for an ablation. I had no problems and I was already taking a calcium channel blocker (similar to beta blocker) which as has been said, is important if you take Flecainide as a regular daily dose.
After my ablation, if necessary I would take it as a PiP and found it to be very effective.
PIP stands Pill in the Pocket to have with you to take when needed.
Another success story here too. Been taking 50mgs daily x 2 for 9 years plus an extra PIP on rare occurrence an AF episode sneaks through. Plus 2.5 mgs Bispopralol x1. I confess to not wanting to take it initially but after a particularly disturbing episode I did and never looked back.
Are you still on that therapy?
Yes plus Apixaban 5 mgs x 2 but recently started with slightly troublesome ectopics so might have to consider an increased dose.
I am on bisoprolol 2.5 mg x 1 a day, but it does not help me at all with my extra heartbeats. The cardiologist recommends that I increase it to 5 mg x 1 a day. I do not believe that 5 mg will help me, because if it was supposed to help me, 2.5 would also help. mg.
10 years ago my Bisopralol was gradually increased to 7.5 mgs and it knocked me out I was so tired. I saw a cardiologist at the local hospital who wanted to increase it to 10 mgs. I then asked my GP for referral to an electophysiologist who I saw and who did offer an ablation but suggested I tried Flecainide first and for me it was amazing so I stuck with it, but I’m aware it doesn’t suit everyone. I have had annual ECG’s from the start and now have 6 monthly bloods as I’m 76 and on Apixaban (about time I changed my photo 😆) All has been well. My last AF episode was March 2021 which stopped with a PIP of another 50 mgs. My AF usually kicks off about 2 am, is vagally mediated so I eat a smallish meal early, take a low dose of magnesium taurate and my yoga teacher is helping me strengthen my vagus nerve. Flavour of the month if you’ve seen the recent Guardian article! We’ve moved so I saw another electrophysiologist last week (Papworth) who assured me ectopics are only worrying if they are very frequent, and upping my Flecainide might be an option if they’re troublesome but I’ve opted for a Holter monitor first to better assess. I cope with what I call the gentle ectopics which are atrial in origin but don’t like the chest banging ventricular ones, but we need to see how many I’m getting of each to assess the effect they might have long term. Hope this helps but don’t forget we are all very individual and what has suited me well might not work for you. It’s trial and error. Good luck
Thank you very much. I'm going to see a cardiologist to see what he says. On the holter I have 30 SVES and 30 VES in 24 hours. That's not a lot, but out of those 70 overall, I only feel maybe 20 and those 20 are terrible, I lose my breath and my heart seems to stop for a few seconds, I gasp and feel as if I will pass out. And of course it passes and everything is fine. Every day I have such complaints. I will have to try again with Flecainide, at least with 50 mg a day. I am afraid of Flecainide because I have read that it can be dangerous. I took for 8 months, in a dose of 50 mg x 2 a day. At first it was ok, later it didn't help me at all and I decided to throw it out.The cardiologist told me to take 50 mg a day every day, but I'm afraid. I drink only when necessary. I'm very sad because of my ailments.
was on it for 12 years before stopped working ok at low doses for me - 2x50mg
I was started on it when diagnosed with paroxysmal AF but cardiologist stopped it as it was causing flutters after a few months. A friend has taken it for years with no probs. I keep it as PIP and it works well for that as snd when. Take care 🦊x
What permanent therapy are you on now?
I’m not on anything other than edoxaban now. Occasional run of ectopics snd PAF episode couple times a year. 🦊x
Worked for me for 12 years. I started on a low dose, but over the first two years it rose to the maximum dose of a total of 300mg a day. After 12 years I was found to be in persistent, though asymptomatic AF, which I've now agreed is permanent. I didn't have a beta blocker with it as I am also asthmatic. I've been in asymptomatic permanent AF for about six years. I am 78.
I'm also mostly asymptomatic, and that worries me.
On flec 2x50 mg + 1x1.25 mg bisoprolol (beta blocker)daily for last 3.5 yrs. This after 2 cardioversions in 3 month period back in 2019/20. Also on 2x5mg apixiban.
Arrhythmia free since June 2020 until early July 2023. After 5 days of arrhythmia went to A&E. Referred for cardioversion again. Received 5 weeks later. Back in nsr since.
Cardiologist took me off bisoprolol after that July visit to A&E. Then after the recent cardioversion a different cardiologist told me to restart same dose of bisoprolol but to stop the flecanide. Only use the flecanide as a pip, 1 dose of 100mg.
Asked him if I could be put on waiting list for ablation? His advice was why ablation if meds have been so successful over last 3+ years? Sounded sensible to me.
Anyway nsr holding for now on just bisoprolol. One difference that I’m experiencing after latest cardioversion and whilst back in nsr is that I’m aware of my heart beating whilst sitting or in bed. Much more pronounced than when last in nsr.
Not sure if this helps?
Yes it does. Thank you.
Cardiologist cut my losartan dosage in half to 60mg and doubled my metoprolol to 50mg twice daily. Right now my pulse rate is in the 50s, so I only taking one tab of the metoprolol until I can talk to doc on Monday.
Hi
Losartan and Metopolol.
Metoprolol did not control H/R Day avg 186 with pauses at night. Breathless on any exertion.
Bisoprolol not breathless but H/R still high at 156.
Then private H/Specialist. Tried CCB Calcium Channel Blocker.
Later reduced Bisoprolol 2.5mg PM for B.P. and Diltiazem 120mg for H/Rate Day.AM.
Best ever solution
110-124 / 69. now year later from changed meds 60s Day and always stay ay 47 avg Night.
No Flecainide, ablation or cardioversion due to ECHO showing enlarged chamber at back.
If H/R is controlled so does your AF.
cheri JOY 74. (NZ)
Thank you
I'm ok on 50 mg, ill with double the dose. But I think if I wasn't taking this now I would be in AF now after an ablation in 2021.
On 200mgs (medium dose) Flecainide for 10 yrs (age 60-70), successful. Your dose may need to be adjusted up if the starter dose does not stop the AF.
Clearly this helps some people. When I was switched to it I had progressively worse syncope faints for three days and ended up in Hospital - off Flecainide and with a pacemaker.
Personally I couldnt tolerate it as it gave me tunnel vision and arrthymias and I ended up on an old drug Disopyramide for my SVTs for the last nearly 40 years which now helps with my PAF as well but it's different for everyone.
SVT?
Supraventricular tachycardia caused by an accessory pathway in my heart. Correct name is Atrioventricular re-entrant tachycardia. Well you asked! Diagnosed with PAF three years ago but asymptomatic at present and long may it last! Because of my current meds including Bisoprolol 7.5mg cardio didn't change anything on diagnosis but just added Apixaban a nuisance as I have OA and can't take anti-inflammatories now but have to stick with it to avoid strokes
No anti-inflammatories. That's interesting.
I am a 79 year old female who had always been fit and healthy until a shingles episode with the pain coming before the rash and doc wouldn’t see me when I could have had an antiviral! When the lowest dose of bisoprolol proved too much for me nothing else was suggested so I saw an EP privately who at first did not believe I had AF as I am slim etc but after he had introduced me to the wonders of a smart phone and a Kardia and I’d sent him a reading of an episode he sent my surgery a prescription for flecainide to take as a PIP which worked fine for a while but later after more episodes, I was advised to take 50mg twice daily and now 100mg twice daily. Only very rarely do I get very short episodes, usually if I forget a pill in the morning. Sadly, it comes with increased fatigue and messes up my digestion which I’d never had problems with previously but still alive!! Of course, we are all different but hopefully it will work for you - no doubt better as most drugs are tested on men!! And I have a hiatus hernia too!
I thought about Kardia, but I think it only works with an iPhone.
Like your screen name.
Well, when it suggested a favourite author, the first that came to mind was his even though I’m a woman!
Kardia works on android phones too. I’ve had a Kardia device in several androids over the years.
Thanks. I may get one.
I find having one so useful. I can print out a summary of events to show my EP. Not that he takes much notice of them 
But it helps me keep track of things.
As you can tell, and someone already said it "we are all different". 70 yr here also US in FL. Asymptomatic also. First diagnosed 18 years ago. I would go months sometimes years with no noticeable episodes. Wore 24 and 48 hour monitors that showed no issues. Started Flecainide at very low daily dose early in my treatment after cardioversion. Over the years I have been switched between daily dose and PIP method with slowly increasing mg/day. July of 2022 I was in Afib pretty much every day, never experienced anything like that before. No idea what triggered it but doctor began increasing my Flecainide dosage to where we finally got to the 300mg daily total allowed and he added Metoprolol. My system did not tolerate the Metoprolol so he discontinued that. After a month of no episodes or symptoms we lowered dosage and after another month lowered again. Now at 100 mg 2xday and still no issues for over a year now. I'd like to go back to PIP but not sure doctor will agree. He was somewhat resistant to my lowing the dose to where it is now. I'm glad to hear they are going to monitor you in the hospital to determine dosage. I'd read that some patients have this done and they are checking the titration level of the Flecainide in the blood as there is a clinically set optimum level for that. Usually they raise and lower the dosage outpatient and let you go for a month or more before making any changes if at all. I assume that method is cheaper than the hospital. Wishing you well.
I was prescribed Flecainide 50 mg twice a day. However, it immediately gave me other arrhythmias so I stopped taking it. My EP suggested I use it as a pill in pocket and it worked wonders. It was my best friend. I would take one 50 mg when an episode started and another 50 half hour later and the episodes would stop within two hours. I don’t know how I would have survived without it.
I no longer use it as I had a MiniMaze surgery last year and haven’t needed it. I still keep it on hand anyway, just in case.
The fact that your cardiologist is requesting an overnight stay in hospital is good news. I have read somewhere that you should be monitored when you initially start taking Flecainide, particularly in the first 48 hours. When I collected my very first prescription there was no follow up or request for feedback. I wish you all the best.
Hi there, I couldn't take it, it gave me pro arrythmias, having said that my afib is quite different to yours, I know when I am in afib and an episode is very uncomfortable and lasts up to 30 hours plus with an irregular heart beat that is around 150bpm at rest
ouch
I'm 79 and have been taking regular flecainide since 2011. I can't take beta blockers as my heart rate drops too low, am on apixaban.
Hi
Flecainide is an anti arythmn drug. Is it necessary?
No.
If your meds control your BP and your H/R (under 100 at rest) NZ doesn't
worry about the rhythmn.
Also you must have an ECHO or MRI to check that your heart structure is normal - e.g no enlargement with valves working normally.
You sound as if all is under control and you have no symptoms.
cheri JOY. 74. (NZ)
I have had a TOTALLY different experience with FLECAINIDE.
Nov 22- Diagnosed with Paroxysmal AFIB, given Amiodarone, Metoprolol, Isosorbide, Xarelto and Lipitor.
Mar 23 - Changed to Flecainide, Metoprolol, Xarelto, Lipitor and Hydrochlorothiazide.
June 23- The Flecainide made my life miserable. Constant bradycardia (45-50 heartbeat); constant dizziness, blurry vision--to the point that I got a new eyeglass prescription because I thought that was the problem; increased breathlessness, weakness, and constant tiredness.
Also, the statin, Lipitor, was REALLY doing a number on me--brain fog, could not concentrate for work, muscle aches, my joints were awful.
SO, I weaned myself off the Flecainide AND the Lipitor (statins truly are the devil); and all has been MUCH MUCH better. I will use the Flecainide as a PIP if I ever have another AFIB event (which I have not had since last year). (I am a rebel, I guess)
I have sleep apnea, of course, use a CPAP, wear an OuraRing and a Wellue O2 Ring; have all three models of Kardia, including the 6L; and the home blood pressure machine.
I wear the rings to bed every night, mostly to monitor my CPAP because my oxygen tends to go to 70s at night, even with the CPAP.
Twice a day, I will use The Kardia 6L to make sure I am not in AFIB, and take my blood pressure.
So far, so good, no AFIB still. I will refuse to use Flecainide full-time again if the AFIB returns, and seek another drug.
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