FLECAINIDE - what are your side effects (if any)?

[adriatico]

My EP says there are no major side effects from this drug?!

The drug accompanying papers mention plenty. What is your experience?

[Finvola]

The information leaflet is enough to put anyone off but legally all possible side effects have to be listed. I've been taking Flecainide for 2 years and the only noticeable side effect is infrequent runs of mild tachycardia which my EP said was caused by Flecainide organising the rogue electrical signals. This can happen with all anti arrhythmic drugs and I've seen it described as 1C flutter or tachycardia.

It doesn't necessarily follow that you will have any of the side effects mentioned as we are all different and react differently to drugs.

Incidentally, my EP says I am tolerating the drug well and it is doing its job - which for me is the main thing.

[adriatico in reply to Finvola]

Wish you many more years without any side effects.

[Bagrat]

On the whole I've been fine ( on it since 2011) Occasionally overwhelming feeling of fatigue and just have to lie down for 15-20 mins. that could be totally unconnected of course. The good news only one episode of fast AF since starting it ( the result of a viral infection and probably dehydration) I am more sensitive to the sun but that is a rare side effect. Also less problems with bloating and nausea ( leading me to believe vagus nerve is being "steadied" too - just a theory!! asked cardio cons who said he had no idea not his specialty)) My GP now retired said it was a dirty drug" which I took to mean there was a potential for unwanted side effects ( thus the scary data sheet) but he also said" if it suits you fine". I hope it is as good for you as it has been for me. Best Wishes WendyB

[adriatico in reply to Bagrat]

Thank you Wendy. So nice to hear that it's been working good for so (relatively) long.

[pip_pip]

Hi

I had a reaction to flecainide. I won't go into details but it was Bad. However this drug is good for some, and when its good it can be very good.

You'll have to give it a go, and you'll know probably after the second dose, how it will be.

I'm sure you'll be fine

Phil

[Hidden]

Mine is extreme tiredness and dizzyness.

[adriatico in reply to Hidden]

You are the first response with negative side effects. Did your EP try to switch you to something else?

[Hidden in reply to adriatico]

No. I managed to get it as a pill in a pocket so I just take it when I go into AF. It works great for that.

[Captendeavor in reply to Hidden]

I am troubleshooting and I suspect flecainide is the cause of my tiredness and exhaustion. I have also gained weight. May I ask You, Richard did you confirm your condition?

[BobD Volunteer]

My experience is that whatever it says on the leaflet I will get if I read it.

[adriatico in reply to BobD]

I know exactly what you are talking about.

[Dovelady in reply to adriatico]

Ditto. I have odd symptoms from time to time but to be honest when you are on a drug cocktail how do you differentiate which drug causes it , it could be interaction with food, stress , dehydration, anything. All I do Know is that after nearly a month on it I've only had one bout of AF and a few fluttery bits so I'm assuming it's doing its job ok.

[Rellim296]

I haven't found anyone in the medical world who is really interested making notes about the side effects three years of flecainide might have given me and I wonder how well recorded these instances are. We've previously mentioned numbness in the toes spreading to the whole foot which may or may not be caused by flecainide and I think something - it could be the passage of time - has had an effect on my sense of taste. It all depends on what you consider to be a major side effect, but flecainide can do an amazing job. Without it I think some of us might be getting so much AF that our hearts could well end up in a sorry state.

[CDreamer in reply to Rellim296]

I think the problem is exactly as you describe. I also think it is really difficult to aportion effect to cause.

[CDreamer]

Apart from making me nauseous on one occasion because I took it fairly soon after I had eaten, no noticeable, immediately obvious side effects and it controlled AF for a few years. I took as PIP - 300 mg and then daily 100mg x 2 for about 5-6 years.

Unfortunately what I didn't know then was that I had an underlying rare autoimmune disease for which Flec is a known antagonist.

Flecainide has also immune suppressant qualities - it has been used in the past, not so much nowadays, for the treatment of MS. I know of only one person who reported neutropenia as a result of taking Flecainide, but as well to get bloods done every 6 months.

[adriatico in reply to CDreamer]

It seems to be very successful in your case. 5-6 years!!! Are you still taking it?

Did you have ablation?

It is my EP who suggested to ask this forum about side effects. He is interested to hear from long time users like you.

I have to take all kinds of stuff to help me with constipation.

[CDreamer in reply to adriatico]

I had ablation No1 Nov 2013 & 2 Mar 2014. Flecainide had ceased to hold the AF by June 2013 after being on daily dose for about 2 years. It is a very powerful drug and it is a toxic drug but I was happy to take it because it improved my QOL so much.

Because it worked for me, doesn't mean it will for you as everyone responds differently.

I would disagree with your EP, there can be major side effects, the ones that affected me described above, but they were an unknown, unknown in my case and the benefits outweighed the risk.

My view is drugs like Flecainide is for QOL and mine was not good and Flecainide did improve it significantly for a sustained period.

Ablations were successful, I had to stop taking both anti arrhythmias and beta blocker suddenly after developing the autoimmune disease symptoms but thankfully the ablation worked so no more meds for AF.

Hope that helps, but remember, we all react differently.

[Cundara1234 in reply to CDreamer]

Excuse me, and what immune disease do you have, if I may know. It's been a long time, I hope you will see my message. I hope you are well.

[CDreamer in reply to Cundara1234]

Myasthenia gravis

[Cundara1234 in reply to CDreamer]

Is there a possibility that Myasthenia Gravis was the cause of your heart problems? Maybe it affected the heart and caused heart problems? Have you ever thought about that?

[Polski in reply to adriatico]

Try magnesium - for the constipation! (providing you don't have kidney problems) Likely it will help you in other ways too . . .

[Jonathan_C]

I started with 200mg flec in October 2016 and then dropped to 100mg in April this year. I find this hard to believe but I am sure I never (or very seldom) experienced side effects when I was 200mg, but now feel some quite often (since lowering the dose!). Its almost as though feeling totally normal is unusual.

The side effects are not major though - and to me are worthwhile price for keeping me in NSR. I quite often feel my heart rate pounding in my chest (and my heart will be in perfect rhythm) and often feel tightness in my chest.

I think the tightness is linked to asthma some how. I have exercised induced asthma so only use the pump if i exercise.

[Jonathan_C in reply to Jonathan_C]

I meant to add before sending that i don't experience the other side effects I have read about.

[Hidden in reply to Jonathan_C]

Hi Jonathan, maybe you dropped to 100mg too quickly. I have been on 200mg for 2+ years and plan to soon start reducing but, with the pill cutter to hand, only in 25mg steps over 1+ years.

[Finvola in reply to Jonathan_C]

I have reduced Flecainide from 200mg daily to 150mg daily since April and I feel exactly as you Jonathan. I went down in 25mg steps and I agree with orchardworker, some of us have to take it very slowly. I have no AF but am more aware of ectopics, breathlessness and jumps and bumps than before I reduced. Plan is to stay on this dose for some more months and go down another 25mg.

[Treffynnon]

I've been taking flecainide for nearly five years, 100mg twice a day, following a second cardioversion and it has been a godsend! I've not experienced any obvious side-effects. I've had the occasional burst of AF that lasts a few hours before returning to SR but it has proved to be good at maintaining rhythm. I get plenty of ectopics and sometimes the rhythm is fairly erratic but generally doesn't go high. There are days when I feel very fatigued and generally lousy but everyone has days like that! There seems to be a general paucity of data on long-term flecainide use compared to some of the other drugs of choice for AF. I've seen stuff that suggests it may increase morbidity, usually associated with other heart conditions and I know it's not prescribed for anyone who has had a heart attack. With flecainide I've been able to stay off the beta-blockers which really did effect me. All these decisions with AF are about risk and reward management and quality of life. Deciding what works for you and going with it is the key.

[CTG99]

When I moved to daily Flecainide at a dose of 100mg / day, I noticed my side vision got a bit blurred. Dropping the morning dose to 50mg sorted the problem and I haven't had any side effects (that I'm aware of) since.

Caroline

[CTG99 in reply to CTG99]

Sorry, initial dose was 100 mg 2x per day.

[adriatico in reply to CTG99]

This is what my EP mentioned too - to drop one dose to 50mg in case of some bothering side effects.

[CTG99 in reply to adriatico]

We dropped the morning dose as when I'm asleep the blurry vision doesn't matter!

[Hidden]

Hi Adriatico, I think you have to try it and if it works look at whether lifestyle changes and supplements can replace it within a 2 year period... that's my plan anyway as I have PAF.

[ruskin10]

Good morning, It has taken me 3 months to settle with Flecainide, its been the sickly feeling every morning and evening, I have tried taking it different ways and found it best for me to take it with food. Most days now my stomach is ok but once a week it stirs up again. I have lots of rumbling and churning when I get into bed. Also anyone taking Pradaxa? I have difficulty swallowing the things, I take a glass of water with it but still feel its stuck somewhere on the way down. I am trying having a sweet after it. Hey ho. Pat

[Gracey23 in reply to ruskin10]

I also take Flecanaide and Pradaxa. Pradaxa often causes same symptoms for me. Some days I feel like it's burning my insides. It's very uncomfortable but not sure why it happens only certain days. I have followed the guidelines and take with lots of water. I did try a Pepsid one day prescribed by EP and it did help but don't want to take anymore medication on daily basis. Nice to know I'm not alone , have been very concerned about what this medication is doing to my insides. We are not alone on this forum, let me know how you are getting along , Gracey

[ruskin10]

Just a post script to my reply. The positive side is I havent had a major AF for 3 months so I am willing to persevere. Pat

[dmac4646]

No side effects below 200mg a day and have been on for 6 years - very few episodes usually driven by chest infections here is a study on long term use -ncbi.nlm.nih.gov/pmc/articl...

Everything has risks and is dependent on personal circumstances - no-one knows the long term risks of scarring from ablations as yet ?

[Treffynnon in reply to dmac4646]

Thanks for the link - not seen that mat analysis before.

[dmac4646 in reply to Treffynnon]

Ok , its quite reassuring - I am fine on up to 200mg a day, but, if that goes then that would force me down the ablation route as I have definite woozy side effects at 250mg +

[Mazza23]

I asked my cardio why I had never had this drug and he said because I had cardiomyopathy it was contraindicated

[Hawkie147]

I was taking flecainide (100mls ) twice a day for 12 years up to last Sept. The drug more or less kept my PAF in order, usually having 3 or 4 sessions per year. In July 2015 my PAF became persistent and my cardiologist who is also a rhythm specialist advised me to stop taking flecainide as it was no longer doing its job.

All I can say is what a difference not taking flecainide has made to my life. After years of 'never feeling well with lots of dizzy spells and feelings of nausea, which I put up with , I now feel like I used to feel years ago bearing in mind I am now 77. And am in permanent af.

Why didn't I complain years ago.

Now I take bisoprolol and warfarin and I feel pretty good.

Horses for courses I think.

Good luck ,

Jean

[pirnough6]

I have been on flecainide twice and on both occasions I suffered really bad side effects for two months and then I was OK. The virst time I felt really groggy,wobbly legs and really bad headaches. This time I felt breathless and weak and very bad headaches. However splitting my dose of bisoprolol to 2.5 morning and 1.25 at night also helped. So no one is sure whether it was bisoprolol combined with flecainide caused the side effects. When I took a very heavy dose of bisoprolol on its own I had no side effects.

[Hidden]

Flecainide gave me palpitations and my EP took me off it straight away. That's quite a significant side-effect !!!!

[Hallju]

@adriatico I have been on 100mg 2x/day Flecainide and Metoprolol for four years. I also have a pacemaker due to tachybrady. I ranged from low 30s to over 300 at times. Each year, though, my PAF has increased, so I just had an ablation on June 30. I'm hoping to get off all meds when I see my EP the end of Sept. I didn't realize that my tiredness, unsteadiness, blurred vision at times and increased headaches could be side effects, but it sounds like that is a possibility. I have just lived with these so long that I assumed it was just an aging (and weight-gaining) thing since none of them have been a huge impact on my lifestyle.

[adriatico in reply to Hallju]

I hope you will be a new happy person by October. Good luck.

[Captendeavor in reply to Hallju]

I also have blurred vision at times, weight gain and extreme tiredness mostly in the morning. I am looking for the cause and suspect flecainide.

[PeterWh]

You possibly don't realise that you can go back and edit your own post after it has been submitted (even days afterwards).

[adriatico]

Yes, constipation is one of the unpleasant side effects. Magnesium citrate is god given.

[Helen100]

After a month on Flecainide, I developed blister type blotches and welts on my arms, which were also very itchy. I was told by my cardiologist that my decision to stop Flecainide had been correct, and I now take it as a pill in the pocket when needed. Fortunately I don't have many AF attacks, but it appears from the responses that people can react very differently to various drugs.

[sleeksheep]

I have been on Diltiazem CD 240mg and had a cardio conversion , saw the specialist 9 weeks later and he put me on Flecainide at 50mg x 2 a day . Had nausea similar to when I was on Sotalol the first few days but by the 4th day had extreme nausea .

Stopped taking Flec for 2 weeks and resumed it at 25mg x 2 to see if I can tolerate it before building the dose up again. This was prescribed by my physician .

I'm also on 20mg rivaroxaban for blood thinning.

Since starting the lower dose I have no side effects and feel able to exercise at will .

[twentybelow0]

Mine was extreme tiredness and dizziness too but only when I was at 100mg. Currently on 50 with no issues.

[dwright12]

I started Flecainide 50 mg twice a day and have extreme tiredness and dizziness with bad constipation! For those that have been on this drug, did any of these symptoms go away?

Thanks

[MikeyF]

Paroxysmal AFr for 20 years. Flec for last 11 years good AF control ( couple of few hour episodes per year) and zero side effects that I’m aware of. Have read of some who’ve taken it for 20+ years to great effect and no side effects. In my opinion best AAD for vagal AF.

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