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Has anyone had problems with Flecainide not working?

golfwatcher profile image
48 Replies

Hi everyone. I am hoping someone can suggest my next course of action.

I was diagnosed with paroxymal atrial fibrillation last November and was prescribed Sotalol (40mg twice daily). For the next 8 months (monitoring with a Kardia device and an Omron BP monitor), I detected episodes of AFib every few days lasting from a few minutes to several hours and heart rate varying from 60 to125 bpm. Occasionally my blood pressure was as low as 85/60 and my cardiologist said he could not increase my Sotalol dose because of this.

In an attempt to reduce the number of AFib episodes, 3 weeks ago I was changed to Flecainide 50mg twice daily and Verapamil 80mg twice daily. The number of AFib episodes increased so Flecainide was increased to 100mg and then 150mg twice daily. However, for the last 6 days I have been in continuous AFib. Fortunately, my heart rate is controlled as it is typically between 55 and 80 just once reaching 93.

I am trying to contact my cardiologist and my instinct is to go back on Sotalol or try another antiarrythmic. Has anyone had a similar experience with Flecainide and what was your next step?

Thanks for any feedback.

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48 Replies
jeanjeannie50 profile image
jeanjeannie50

In the past I have taken both Sotalol (did nothing) and also Flecainide alongside Metoprolol. What has helped my AF most is the beta blocker Bisoprolol. It's strange, but our hearts probably all beat in a different way to each others, so what suits one may not suit another. Only by experimenting can we find out. I had never taken Bisoprolol in the whole of my 18 years of AF, but at the moment it's keeping my heart rate in a good rhythm.

Flecainide was actually the cause of a lot of my tiredness and my heart beating erratically when waking up hills.

Jean

golfwatcher profile image
golfwatcher in reply to jeanjeannie50

Thanks Jean. That's useful information. Do you still get any episodes of AF on Bisoprolol?

jeanjeannie50 profile image
jeanjeannie50 in reply to golfwatcher

I'm in constant low rate AF, have been for several years now. My pulse is usually between 60-90 at rest, more often in 70's though. I'm not really aware of how my heart is beating.

golfwatcher profile image
golfwatcher

That's really useful, Jean, thanks. I hadn't realised you can live relatively normally with low rate AF. I was thinking that if I couldn't find a drug to stop or reduce the frequency of AF episodes I would need a cardioversion or ablation.

Jalia profile image
Jalia

I found that Flec did not work for me. It actually promoted arrhthmias. Cardiologist even tried IV Flecainide immediately before attempting DCCV but it only held for a few seconds.My anti arrhythmia drug is now Disopyramide but that is proving difficult to obtain now.

golfwatcher profile image
golfwatcher in reply to Jalia

Thanks Jalia.

I think I’ll have to cut back on flecainide if I don’t hear from my cardio soon. Does disopyramide prevent your AFib episodes or reduce them? Does it control your heart rate? Do you know why it is becoming difficult to get?

I appreciate your reply

GW

mav7 profile image
mav7 in reply to golfwatcher

 golfwatcher

It seems you have gone from paroxysmal to persistent afib but your heart rate is well controlled between 55-80 which is the key.

Relax and don't be concerned because the medications have not completely eliminated afib. Again, the key is your afib is controlled.

Would not recommend changing your medication dosage without consulting with your doctor because it is controlling your afib. Assume you are taking an anticoagulant ?

Did you receive a cardioversion when the initial afib was discovered and Sotalol was prescribed in an effort to maintain NSR ? Best to You !

golfwatcher profile image
golfwatcher in reply to mav7

Thanks for your reply and your encouragement. Yes I’ve been taking Eliquis since I was diagnosed. A cardioversion has not been suggested but I was offered a referral to an electrophysiologist to discuss ablation. Yes sotalol was initially prescribed for the arrhythmia. I’m unsure how much sotalol worked but AFib has definitely got worse since I started the flecainide/verapamil combination . I am assuming it is verapamil that is controlling my heart rate and flecainide is not preventing Afib as intended. Do you think it is worth enquiring about cardioversion or is it less effective for persistent Afib?

Thanks for your interest and best wishes.

mav7 profile image
mav7 in reply to golfwatcher

I am certainly not a doctor and like others here provide thoughts based on personal experiences and reading about others.

But yes do talk to your doctor about a cardioversion. Most patients receive one initially as a barometer to determine future treatment. Not sure, EP and doctors may prefer you have a cardioversion prior to discussing ablation,

One theory is a cardioversion to convert to NSR and antiarrythmic drugs to maintain. Would be good to discuss with your doctor concerning success rate and future treatment.

As BobD often says primary purpose of all treatment is to improve quality of life. So let that be a consideration for your decisions.

Best to You !

golfwatcher profile image
golfwatcher in reply to mav7

Thanks again. I haven't heard that theory. I'll look into the cardioversion option and mention it to my cardiologist, hopefully next week.

Cheers

Jalia profile image
Jalia in reply to golfwatcher

Disopyramide reduces my AF......I think !! Heart rate is usually OK when not in AF but goes 140 - 240+ when in AF. To be honest I'm not really sure what it's doing for me any more. I've been on it fir such a long time. Hope to speak to my EP shortly.

I understand that as Disopyramide is a little used drug it's not profitable to manufacture by some companies. Hence the difficulty in obtaining.

golfwatcher profile image
golfwatcher in reply to Jalia

I see. Thanks Jalia. Good luckless in finding a suitable alternative if it becomes unavailable

GW

pollypicky profile image
pollypicky

Flecainide made me worse stopped taking it.

golfwatcher profile image
golfwatcher in reply to pollypicky

Thanks for your reply. Hope you have found a more successful alternative.

pollypicky profile image
pollypicky in reply to golfwatcher

No still get Afib every night. Nothing helps much. I hope you get better help.

gsd01 profile image
gsd01

In the days when I had PAF around once every couple of weeks, the cardiologist prescribed me Flecainide to help prevent the AF attacks. I had to stop Nebivolol.(controversial) and replace with Flec. During first 24hrs AF began continual stop/start cycles, about an hour in AF and an hour sinus and remained in this mode for several days until my GP was able to speak to the cardiologist and stop the Flecainide. For me the cure was definitely worse than the disease.

golfwatcher profile image
golfwatcher in reply to gsd01

Sounds similar to my experience. What was the flecainide replaced with and is your AF controlled now. Thanks. GW

gsd01 profile image
gsd01 in reply to golfwatcher

Went back on to Nebivolol 5mg. AF continued with the once every couple of weeks for 24 hrs or so episodes for several years, but finally became permanent about 2 years ago. I found that the permanent version had much less impact on my general well being than the paroxysmal version so Ive opted to live with it, continuing with the Nebivolol for rate control. Fortunately most times I hardly know I have it.

golfwatcher profile image
golfwatcher in reply to gsd01

That’s useful to know, thanks.Pleased you are able to lead a relatively normal life

Moonriver profile image
Moonriver in reply to gsd01

Why was stopping nebivoloL controversial? I am currently on this drug and it controls heart rate well.

Jajarunner profile image
Jajarunner

I had 10 cardioversions while on flec and am now on amiodarone after three failed ablations close together.There are other drugs available such as verapamil which are good. I can't take it as it makes me pass out 🙄.

Good luck x

golfwatcher profile image
golfwatcher in reply to Jajarunner

Thanks for sharing your experiences. Were the cardioversions unsuccessful or did they work for a while and then the AF return? Over what period of time did you have the 10 cardioversions?

Jajarunner profile image
Jajarunner in reply to golfwatcher

All the cardioversions worked for between 18 days and about five months. Ablations worked in average 3-4 months, recovery time was six months each time.🙄. This was all within 3.5 years. I have only had 14 episodes of afib but it is always very fast and I always have to go to a&e.

golfwatcher profile image
golfwatcher in reply to Jajarunner

Thanks. Hope all goes well for you.

Thomas45 profile image
Thomas45

I took Flecainide for 12 years, the last 10 of those ar maximum dose of 390mg a day. For me it was a winder drug. It reduced by AF episodes to one or two ten minute episodes a year. After 12 years I was found to be in persistent though asymptomatic AF, with a heart rate close or slightly above normal.I was not prescribed beta blockers as I am asthmatic. I've had what I call permanent AF for about seven years. It causes no problems. I take Warfarin daily, eat what I want, and self test.

Following an unrelated hospital operation under general anaesthetic, when my heart rate went beyond 190bpm a well-meaning hospital doctor prescribed Bisoprolol. 7 weeks later on a Christmas Eve I had the first bout of urticaria, recognised by a doctor with additional dermatological qualifications as a side effect of the beta blocker. While I was being weaned off Bisoprolol I had a second side effect of very sudden exacerbation of asthma and chest pains. Fortunately I was in a pharmacy at the time, and I had emergency admission to hospital, but only for two days, when I was pleased to leave it to the care of my GP, and after a course of Prednisolone I was back to normal.

There's a note on my medical records not to prescribe any beta blockers.

bassets profile image
bassets in reply to Thomas45

I am taking dilitiazem instead. of. a beta blocker because I have asthma. This does virtually the same job and I've had no real problems with it. Perhaps this may help in future?

Thomas45 profile image
Thomas45 in reply to bassets

Thanks. I was offered it by a consultant, but as my heart rate is close to normal I could see no use for it at the time. My heart rate still doesn't trouble me, but as you say it may be of use in the future.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to bassets

Hi

He's taking Vermapril another CCB to Diltiazem.

I take Diltiazem 120mg AM and Bisoprolol 2.5 PM they act differently. First for H/R control and BB Bisoprolol PM for control of BP.

cheers Joy. 74. (NZ)

golfwatcher profile image
golfwatcher in reply to Thomas45

Thanks for your positive experience of Flecainide. Sort to hear of your worrying hospital experience. Hope all continues well with you.

Lilypocket profile image
Lilypocket

Hi

I was on Sotalol and then Flecainide ( and Bisoprolol and Pradaxa) over 12 years. They helped a bit but overall didn't work. The Flec increased my episodes but they were shorter than when I was on Sotalol.

So I opted for a Radio Frequency ablation in July 2022 . Things were a bit bumpy after but I am now off all meds . An ablation gives us a break that can sometimes last years ( or just months) before the arrythmia comes back but I think it's worth it. Like you I had PAfib but once it becomes persistant it is a little harder to shift. If you feel this could be the way to go ask your Dr for the name of a good Electrophysiologist. But if your rate is well controlled and you are on anti- coagulants and symptomless while in Afib then that's OK too. Many live very well in

in Afib.

I wish you well.

Take care.

golfwatcher profile image
golfwatcher in reply to Lilypocket

Thanks for your kind wishes and pleased that your ablation went well. Helps when I have to make a decision

Sally_Scott profile image
Sally_Scott

Hi. I must be the only one on here who is happy with flecanide lol. I was a persistent afiber. Cardioversion is the route first so u can be back into sinus rhythm then one of the meds to keep u in sync. I’ve had cardioversions, ablations, pacemaker and in January this year had OHS. Bisoprolol was awful for me. I have just reduced my flecanide from 100 twice a day to just once a day. Personally I wld speak to your cardiologist and see if u can get a cardioversion first. Good luck.

golfwatcher profile image
golfwatcher in reply to Sally_Scott

Good to hear a positive story on Flecainide. Pleased your surgery went well. I’ll discuss the options with my cardiologist. Thanks.

Vonnegut profile image
Vonnegut

How different we all are! Flecainide 100 mg twice daily works fine for me and has virtually put an end to AF episodes but I am female, 79 (and don’t watch golf!!)

golfwatcher profile image
golfwatcher in reply to Vonnegut

Pleased it’s working for you so well. I don’t think being female with a dislike of golf would make much difference 😀

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I hope you have had an ECH or NRI of your heart.

Reason if the structue of your heart is abnormal eg enlarged you should nt be on an antirhythmic drug.

By your CCB Vermapril you are already slowing down your H/R under 100 and therefore your irregular heart beat is not so apparent and less/mo stress t your heart.

A private H/Specialist put me on Diltiazem 120mg AM for H/R and BB Bisoprolol 2.5mg PM for BP. This has controlled my Rapid, Persistent AF H/R. My Echo in 2021 sho ws an enlargement of back chamber so no cardioversion, ablation or antirhythmn drug.

This pm I checked my BP and H/R.

110-130/69-73. 60s H/R at rest Day with 47avg Night.

I'm controlled and happy with that.

cheri JOY. 74. (NZ)

golfwatcher profile image
golfwatcher in reply to JOY2THEWORLD49

Yes I had an echocardiogram last year and my cardiologist was happy with it. Thanks for checking. Pleased everything is going well for you.

Brandue profile image
Brandue

I take Flecainide 175 mg daily but I break the 50 mg tabs in half and take it 7 times a day. I know it's a pain but I get lightheaded taking 50 mg at once but taking 25 mg doesn't bother me. I noticed a great decrease in PACs. It hasn't cut down the episodes of afib which come every other week and can last 10 hours but usually around 4. I find the drug helps to convert back into sinus and is safe to take. I've been on it for a little over a year. My body will grow tolerant as it does to all drugs eventually..

golfwatcher profile image
golfwatcher in reply to Brandue

That’s interesting. With spreading the dose out during the day do you notice any difference during the night? When you have the Afib episodes is your heart rate controlled?

Thanks for your reply

Brandue profile image
Brandue in reply to golfwatcher

During afib Heart is not controlled pulse around 140 but tapers down after awhile to 80 then I know it's going to convert. I do take extra Flecainide when in a fib but always stay with 25 mg dosing. Afib is always at night which tells me it's the Vagus Nerve.

golfwatcher profile image
golfwatcher in reply to Brandue

Thanks for the additional explanation . Makes sense.

Visigoth profile image
Visigoth

Flecainide made my arrhythmia much worse so I was put on propafenone (years ago) which was fine for a long time. More recently, when my AF was diagnosed I was put on amiodarone which works extremely well (you have to be careful of its effects but lots of people are fine on it). I was very symptomatic and it sounds like you’re not? But I definitely think increasing the Flecainide was the wrong decision by your doc. It’s known to be a pro-arrhythmic in some cases.

golfwatcher profile image
golfwatcher in reply to Visigoth

Yes I think you are right. Three weeks ago I was having AF every few days , then started Flecainide and now I’ve got it constantly.

Gloria2023 profile image
Gloria2023

I have a history of paroxysmal AF for several years. When I first started Flecainide 5mg bid, they also had me take Diltiazem 120mg which worked for 2 months. When it quit working they had me increase the diltiazem to 180mg which made me very hyper. Diltiazem is a calcium channel blocker. They took me off and switched to metoprolol 12.5mg qd which is a beta blocker. That eventually quit working too. I also was having a lot of reflux in my esophagus and several times thought I was having a heart attack. A nurse practitioner in the ER added pantoprazole 40mg to the Flecainide/metoprolol and that helped my AF tremendously. I did not have a history of reflux and am assuming it’s from one of the meds I’m on. I had an ablation done 18 days ago and so far no arrhythmias. Hope it continues to work because I was having multiple kinds of arrhythmias most every day ranging from 30 minutes to 36 hours.

golfwatcher profile image
golfwatcher in reply to Gloria2023

Yes I hope the ablation of solves your problems. Thanks.

golfwatcher profile image
golfwatcher

Thanks everyone for your replies and comments. I am amazed at the interest and willingness to share experiences. This is a great forum!

I have now got a clearer picture of what to discuss when I see my cardiologist. I will explore the possibility of cardioversion. I have posted a new question about the effectiveness of cardioversion for persistent AFib.

Thanks again.

Contra profile image
Contra

Flecanaide fumurate has attacked my liver,

I was going to toilet often and had a dry mouth, seems like my body was trying to get rid of it!

Since I stopped taking Flecanaide fumurate everything comes back to normal

In my case this drug was a bad experience

Take care and listen to your body!

golfwatcher profile image
golfwatcher in reply to Contra

Same as experience as me. I am just taking Verapamil now and Afib is only occasional and doesn't affect me.

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