Had enough of flecainide

I have been on 50mg twice daily and 2.5mg bisoprolol for about the past 4-6 weeks now and I'm getting to the point where I have had enough.

I'm finding the side effects too much as it's making me feel old (I'm 43 but feel like I'm 80), I feel tired a lot, get chest pains, I'm short of breath, I feel irritable and stressed a lot and I have become more paranoid about my heart. I feel less motivated and have put on a stone since starting this med.

I have had a couple of AF episodes and have doubled my Flecainide dose to 100mg and gone back into NSR within 4 hours each time. I went to see my cardiologist last week and she said using the pill in the pocket approach is fine.

I'm going to stop the Flec next week and see how I get one and then use it as PIP as and when I need it.

Has anyone else experienced similar with this medication?

40 Replies

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  • I started on flecanaide 5 weeks ago and I have to say it's been fantastic for me. I've had none, or little side effects. It could be the bisoprolol that is making you tired and put weight on as this drug can slow the heart rate. Worth asking your EP..

  • I've been on bisoprolol for over a year though and not felt like this before!

  • How long did it take for the flecainide to start working for you

  • They chemically cardioverted me using Flecainide when I went into hospital with AF over a month ago. Been on it twice daily ever since.

    I've had two episodes of AF since then and took a double dose of Flecainide and its worked within a few hours.

    Other than that I don't really know as I don't go into AF that frequently even when not on meds.

  • Mine began immediately, but I had a bit of a honeymoon, thinking I was relieved & sleeping better. then the rot set in & the side effects are severe. blessings,

  • Hello joebob

    I took 100mg Flecainide twice daily for just over a year without any problems - indeed I felt really well on it with no AF or other miseries. Unfortunately a trial on a lower dose didn't work well and since resuming my original dose I now have all the symptoms you describe. As I also take 1.25mg Bisoprolol, I am blaming it, rather than the Flecainide but who knows?

    If you feel like me pyschologically, that might explain the weight gain - especially if you are tired and 'down'. Not knowing what is causing the problem is sometimes worse than the symptoms - certainly with me. Paranoid is a good description - I find myself mentally 'watching' every heartbeat - not the way to be at all.

    My aim is the lowest possible dose for the maximum quality of life, so if pill in pocket works for you - go for it and best wishes.

  • The flecainide definitely causes these symptoms Joebob explained. but, I have already neurological symptoms after so many years of severe attacks before oblation was discovered - & this pulled my resistance to anything down.

    BUT, THE MEDICINES ADVICE PEOPLE DO ADVISE IT IS A DROG THAT MUST BE TAKEN WITH CAUTION.

  • I too had some negative effects from Flecainide. Originally I used it as 'pill in the pocket', but a few months ago my fibrillations increased and I had to take them more regularly. I had to stop them after a couple of weeks, as I developed spots and welts on my arms, plus chest pains. I have now gone back to pip with them, so have to now take less frequently, and for short periods I seem to be ok with them. Sometimes I don't take one, and I come out of AF within four to five hours, and on other times I need Flecainide to help out.

    I do hope that the 'pill in the pocket' works for you, as it must be very stressful to feel as you do at the moment.

  • Yes, here I am again, recognizing the effects you all have with flecainide - I have the rash also. what a sad lot we all are!!!

  • I had similar side effects on the same dose so I tweaked the dose. I now take 50mg Flecainide morning and again in the evening and I halved the bisoprolol to 1.25mg at night only. When I told the EP he said it was fine. It works for me. I think it was the 50mg bisoprolol that made me feel so awful.

  • I take 2.5 of bisoprol and like you felt as though I was 20 yrs older than 50 . I also put on weight around my tummy and also was more aware of my heart and had chest pain . It was then reduced to 1.25 but this didn't help with rate so back on 2.5 but as 2 1.25 tablets which made such a difference now Don't have chest pain feel much better and am back exercising and have lost weight 😀 My Dr said if it has helped she's happy to prescribe this way instead of 1 tablet

  • I took Biso and Flec and found it was the Biso that made me breathless and tired, I was fine just taking the Flec on its own, however, there is a school of thought that says you need both a beta blocker with an antiarrythmic. Flec as a PIP worked very well for me when I was in the early stages and only having occasional episodes but as the AF progressed I found that the AF itself caused fatigue and breathlessness so sometimes it is hard to know if it is the AF or the meds.

    My solution was to have an ablation, no more meds, no more AF. Have you discussed other treatment options?

  • Hi Joe, I can only relate my experience with flecainide as I wasn't put on bisoprolol. On 50mg x2 per day I was still getting AF, increased to a regular 100mg x2 per day stopped it completely.

    What is important is you get to stability asap from a physical and mental standpoint. If you continue to get breakthroughs on a regular 50mg Flec ask to go up to a regular 100mg. As the more AF you get with PIP the faster it will increase and apparently the less you get the more likely it will disappear. Also my cardiologist favours an even dose of Flec rather than ups and downs.

    Don't expect to feel good as your body get's used to the drugs and you get your own head around the scary aspects. It took me 4 months of feeling rubbish and after starting on Nutri Ultra Muscleze (a Magnesium compound) before I started feeling a bit more like normal.

    Unfortunately, we are all different but I can tell you with a lot of persistence and lifestyle changes I am now 19 months in with no more episodes, feeling fine and looking to reduce the Flec soon.

  • I also take Magnesium, but that has not altered the side effects of the flecainide! but, I am aged now, & everything is more difficult to take.

  • How do you know how much magnesium you need? Having much can keel your hard.. I have stopped Bicoprolol as PIP, because it did not help to stop AF fast, and make me feel tired ,weak since my normal blood preasure has been reduced .

    Dr. Adviced to stop Bisoprolol and started Flecidine 50mg twice a day. I started ones a day.

    In my over 30 years of experiencing AF ,I thing it should be trial approach to every med. and depends on over all medical condition.

    Activity,good diet,less stress,socializing can help a lot.

  • Interesting to know about AF treatment with Magnezium.

    I am also aged.Relactant to take med., but have no choice.

    Started Flec. 50 mg/ day. I would prefere as a PIP, but scare to have prolong episodes of AF.

  • Like yours approach !!!! Where did you buy the Magnezium,and it is different from the one you are taking.keep me posted.Thank you

  • Hi,

    I was on 300mg daily along with Metoprolol and agree I felt so old and unfit I had no energy to do anything, was even breathless taking my daughter to school.

    I did put up with it until I had my pacemaker etc and now don't need the things but some people can tolerate them better than others in my opinion.

    Good luck

    Wendi

  • That is a very high dose, is it not? ----I met a lady in the waiting room of the drs. rooms & she had been given a high dose of flecainide & nearly died - but fortunately, they were able to do a successful oblation on her.

    Forgive me all, if am not a cheer up --I've learnt to be careful over 70 years of suffering this.

  • I had similar thing with sotalol - didn't take it for long, came off it with advice of GP & Cardiologist. Just take flec as PIP & fortunately have only had to resort to

    It once (touch wood) 2 X 100 mg, so far.

    Best wishes that you find the treatment for you - you shouldn't have to put up with feeling as you do, especially at your young age.

    Ally

  • I feel it is the Bisoprolol. Like all the above I feel twenty years older, my weight fluctuates daily, all around the tummy, I get bloated, breathless, feel crap. I am on 15mg a day, the recommended high dose is 10mg. I have now upped my Digoxin, to 250 a day, cut the Biso to 12.5, and my GP is monitoring me. I need to get to the required mix, and dosage, that works. And of course, with AF, everyone is different. Not one size fits all scenario. I am having bi weekly blood tests to watch my toxicity related to the Digoxin. Happy days.......

  • Hi I had to go down to 1-25mgs of Bisopral,from 2-5mgs,it suits me fine now!

  • Interesting points about the bisoprolol. I have actually got a prescription for a reduced dose but decided to cut the flec instead.

    I feel better already. My pulse went up to 90 for a short while this morning but now it's back to normal (about 60). Not feeling as much chest pain, I have more energy and actually feel a bit more motivated and I only stopped the flec yesterday!

    I will post updates on my progress on here if anyone would find it useful?

  • Just watch it if you cut the flecainide suddenly, as I have just written, I had a bad attack when I did that. Not wise, I guess.

  • Any drug you take has the capacity to give you the symptoms you take it for, Flec is known to cause palpitations in some people but as Jansang says, you should reduce slowly and with consultation with your doctor.

  • It's a little late for that as I had my last dose on Saturday morning!

  • Hi sorry to hear your not feeling well, l have been on both these meds it was the bisoprolol that gave me the same side effects as you, not the flec there are other meds that can be tried. Hope you feel better soon. Kind Regars

  • I saw my heart specialist for the annual check-up a couple of days ago. He reminded me that i've been taking 150mg x 2 per day of Flecainide for the last 10 years. I've never taken Bisoprolol. I cannot remember when I had the last bout of AF, certainly more than a year ago. When I was first diagnosed with Paroxysmal AF I was put on Amiodarone, but that was intolerable - chest pains, arm pains, feelings of panic, and my AF episodes continued. What suits one person doesn't always suit another. I hope you soon find whether it's the Flecainide or the Bisoprolol that's causing problems.

  • Interesting! I find that generally, the men I speak to seem to tolerate flecainide better. Maybe they have a stronger nervous system, though women these days have to be tough!!!

  • Ouch. I feel for you.

    I took flecainide for 5 weeks after my ablation last May. I stopped because of the side effects - what you mentioned, plus dizziness, bleary eyes, tingling and numbness in hands and feet, and a few other minor things. Instead of going away, the symptoms got worse. It turns out flecainide suppresses the brain's immune system, and I now have what my neurologist called a drug-induced autoimmune disorder. I've written about it elsewhere on this site.

    In my view, flecainide is a very dangerous drug, far worse than occasional arrhythmias.

  • Hi there , I was put on flecanide 100mg twice a day at the start but dropped it to 50 in a morning and 100 at night , and 2.5 mg bisoprolol too , I felt the same for a good few months when I started with it but then it sempt to settle , still feel a little dizzy after it sometimes 😊

  • I wanted to alter my dose of Flec similarly as pm/evening/night were the worst times and therefore seemed logical to take a higher dose than in the morning. However my cardio said much better when reducing to keep the dose even...he didn't explain why. So when I start reducing I will use a pill cutter to go from 100mg x2 per day to 75mg.

  • Yes, Yes, Yes! I could not take it before my oblation of the extra AV node I was born with, but have had to give in to 50 mgs. a day now, as age has now increased the arrythmea.

    I also have awful side effects & am even now, scraping a few grains off the dose even to try to persevere.

    BUT, JUST A WARNING,---------- DO NOT DO WHAT I DID SOME MONTHS AGO, & STOP IT SUDDENLY---- I ended in a bad attack, the like of which, I have not had since before the oblation! I had to fall into the local Drs. surgery as I was shopping when it happened.

    The directions on the print out I got from the chemist, say it is sometimes given only in a hospital atmosphere. It is a type of anesthetic.

    If you do even cut it down, do so very gradually though.

    I have spoken to some people who do not have side effects, but some of us are more sensitive. blessings,

  • What dosage were you on and how quickly after stopping did you have your AF attack?

  • I am 83 - so was only on a low dose of 50 mgs. a day amazingly. I am particularly sensitive to all drugs though & Drs. are aware of that.

  • I had the attack in the street the very next day after stopping the flecainide! I would never give advice on what dose anyone should take but only just to say to be thoughtful & not rash in doses. Its a very fine balance.

  • I am sorry, Joebob. I wrote back replies that I was taking 50 mrgs of Flecainide daily. It is 100 mrgs. At my older age & sensitivity to drugs even that is knocking me too much, though it does steady the heart.

    I actually scrape a tiny bit off the halves I take morning & night to cut down the excessive effects. Will be seeing my specialist again early Dec. Poor man!

  • I am sorry,Joebob. I wrote back replying that I was taking 50 mrgs of Flecainide daily. it is 100mgms. Being older with sensitivity to drugs also, this is knocking me too much, though it does steady the heart. I actually scrape a tiny bit off the halves I take morning & night to cut down the excessive effects. -- I will be seeing my specialist again early Dec. Poor man!

  • Just a quick update 3 days after stopping the flecainide.

    I've definitely had a lot more energy since coming off the flec. I no longer feel 20 years older and I'm motivated to lose weight again.

    I have had some side effects though. I had an absolutely splitting headache last night and didn't get off to sleep until about 2am. I've also felt some mild flutters in my chest and I've had the occasional skipped beat while feeling my pulse.

    Some irrational thoughts popped into my head while feeling the skipped beats and I thought about starting the flec again - then I remembered why I stopped in the first place!

    Hopefully the side effects won't last too long.

  • Yep! I've been on flecainide for 3 months and, yep, it makes me feel like I'm 80! I'm going to find a new doctor who is more receptive to changing meds. Flecainide has been very effective at almost totally eliminating NY afib symptoms but I'm so exhausted that I'd be much happier findin something else that works!

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