Flecinaide seems to have stopped working

[Wildrunner]

After about 10-months of taking 50mg Flecinaide twice a day and being totally free of AF, it’s reared it’s ugly head again over the last few days. I’m totally gutted as it’s been great not having to constantly worry about an episode. Has anyone else had a similar experience and what did you do?

[pottypete1]

To be honest it is unlikely Flecainide has stopped working. Recurring AF will happen even if you are taking Flecainide.

If the occurrences become more regular talk to your EP if you have one as there are other remedies such as ablation that could be considered.

Just try your best to not get stressed with the situation as that can sometimes make matters worse.

I have been taking Flecainide for more than 30 years.

Pete

[Paulbounce]

Hi Wildrunner.

I understand how you feel. The same thing happened to me - I was on flec and had two years afib free. It's a real downer when it comes back. I was put on Sotalol instead of flec and it does help.

Now the choice I was given was an ablation. I have decided to try another CV (been waiting long enough) and keep on the Sotalol. If I get another two years of sinus I will be delighted - if not it's ablation time.

Now let's look at the positives for you. The fact that you where in sinus for 10 months is great news. It means your heart can revert and it seems likely other treatments will work for you. Your cardio may decide on a cardioversion and increasing your dose of flec (50mg twice a day is quite a low dose). You may be offered an ablation which from what you say could well work for you - although you may need a 'touch up'.

From personal experience the syptoms of afib get less and less as your body get's used to it. I think it's best to accept it's returned and look at other ways and treatments to help. Rest assured that there's a real chance of a treatment that will help you. Worrying about it won't - it will just make matters worse. That's easy to say I know but I have been exactly where you are now. This is part of having afib and it's a pain I know - but there are far worse illness to have.

So what to do ? Contact your medic and start the ball rolling. Don't be 'gutted' but see what else is on offer to help you. Know that's it part of having afib and most of the members here have had the same. Look forward to getting it sorted and returning to sinus - of course I can't promise anything but the odds are in your favour.

Good luck and keep us updated.

Paul

[Wildrunner in reply to Paulbounce]

Positive words, but it’s been a hell of a journey so far. I’ve already had a failed ablation, AF got much worse after it, hence I ended up on meds.

[Paulbounce]

I've got you - didn't know you have already had an ablation. It can be luck of the draw if they work or not. Maybe it's needs a 'touch up' (another one) but only a medic can tell you that. OK here comes the disclaimer - I am not a doctor. These are just questions I would ask my cardio in your shoes. Is it worth having a CV and increasing the dose of flec and taking a small dose of a beta blocker to help keep flutter away. I would also ask about taking an extra flec as a PIP incase afib returned. If none of these work then it would be med's for rate and rhythm control. I think personally that rate control is the most important. As your body gets used to being in afib the side effects are not felt half as much. I would also ask about having another ablation and if it would / may improve things - they may say no and to keep well clear. It doesn't hurt to ask though.

Other than that I can't really help much further. I'm sure though that other forum members will reply and offer further advice and suggestions.

Paul

[BobD Volunteer]

Flecainide can't stop working. Not in the way say opiate pain killers can as there are no receptors in the body for it so you don't need more and more of the drug for the same effect. AF begets AF so the condition will almost always progress.

Ablation can work for many people and improve quality of life a great deal but must always be considered part of ongoing treatment for AF and may also need repeating.

Some people find it a relief if/when they finally become pemanent (a state of agreeement with doctors rather than a medical condition) and their rate well controlled as the body seems to come to terms with itself and the terror of wondering when you will have a paroxysmal event is past.

Remember that all treatment is only for quality of life (QOL) as provided rate is controlled and the patient anticoagulated where appropriate there is no difference in outcome whatever treatment is offered.

[DawnTX in reply to BobD]

wonderful reply

[CDreamer]

Yes, I got good results for a couple of years and then lots of breakthrough episodes. When that happened I stopped taking Flecainide - not much point taking it really - all the risks without the benefits. I went on to have 2 ablations, then Pacemaker and that has reduced my AF burden to about 2% annual, and that only when I have an infection.

[Cassag in reply to CDreamer]

I have been thinking of stopping flecanide for the same reason. Did you tell your cardiologist or just stop. We're there any worsening symptoms.

[CDreamer in reply to Cassag]

My EP was monitoring me closely and accepted Kardia traces emailed to them. As soon as I started to have break through episodes they thought risks exceeded any benefit so I stopped. I did go back onto Flecainide after ablation to assist maintaining NSR, then I started having symptoms of another condition, worsened by Flec and Bisoprolol so I stopped both immediately.

[tunybgur]

I was on 2x50 for about 2 years and was AF free but like you I started getting the odd attack which became more and more frequent.

This dose wàs increased to 100mg am and 50mg pm and since then I have been AF free, that was 5 years ago.

I always take them an hour before or after food as directed.

Good luck

[Brizzy50000]

I was on Flecainide and bisoprolol for a number of years both became ineffective after a time, AF was making my Q of L unbearable, every day or every other day hours at a time, so accepted Ablation when offered.

That was four and a half years ago and I've been AF free every since.

[Thomas45]

Your dose is the lowest possible. See a medic with a view to having it increased . My dose was increased and it kept me AF free for 10 years.

[Becksagogo]

Oh how I sympathise with you.After 4 years, my AF has returned AND I am getting extra beats.

This is due to a leaky valve which they feel may be too dangerous to operate on. So I have three choices.

1 is to have a CV. My last one lasted about half a day

2 is to go back on Amioderone which caused so many toxic side effects last time I was on it but it did work.

3 is an ablation which seems to be the most favourable.

I hope you get sorted soon as it's rough feeling like this.

[Afibflipper]

I was put on it earlier this year, to begin with had side effects that I felt were intolerable so stopped taking it - on EP instruction but wow, the AF returned about 24-36 hours later full throttle. Put myself back on it and and things did calm where side effects were concerned but having another ablation later this month as HR still erratic but I don’t feel a lot of the events so much as before

[Summer60]

Happened with me so upped the dose to 100mg twice a day and been fine ever since.

[DawnTX]

don’t assume your meds are not working it could be a variety of things going on the best thing to do is talk to your doctor ASAP if possible don’t stop taking them because you blame the drug. Unfortunately with a fib we all seem to go through this. I had six months free the first time a year and a half to second ablation I had another in April that gave me no relief until I just had a cardioversion two weeks ago. I feel blessed I am feeling well and NSR There is no cure for a fib talk to your doctor none of us can tell you why because we don’t even know why it happens to us best of luck

[listerines]

Best to discuss with your EP about perhaps increasing the flec dosage (50mg x2 is a low dose), but if you have only had one episode in 10 months it may be wise to just stay on the 50mg dose and see if you have a few more episodes in close proximity (where changing meds or upping dosage of flec could be prioritized) or hopefully you do not have another episode for many months. No medication will keep you completely free from afib over time except maybe amiodarone (but that comes with its own set of possible side effect challenges).Btw I have had 3 ablations now in 2 years and still on flecainde - it does a pretty good job at keeping my episodes down and not as severe as pre ablations. I have had to increase dosage over time though to get the same effect (which is very common with many types of medication sadly) started on 50mg x2 and now at 75mg x 2. Hopefully your heart has reverted to a stable pace - keep safe

[Bagrat]

I'm sure you would have mentioned but has anything in your day to day life changed? Viral infection, stress, more worries than usual ( though I guess we've all got those at present!)I've been on flecainide since 2011 100mg twice a day with 4 yrs on 50 when heart speeded up in sinus rhythm for no reason. Now back on 100 for over a year for same issue ( diff doctor) Hope you get sorted soon.

[secondtry]

Three things I did after having 9 episodes in a month: always take Flecainide 3hrs after a meal and don't eat for one hour after taking, secondly ask your medic if it is worth trying 200mgs/day (a medium dose) and lastly make many lifestyle changes including taking a magnesium compound and CoQ10.

I have been AF free for 8+ yrs apart from two <1hr episodes brought on by known triggers.

[dani777]

i've only been diagnosed with SVT so far and it took these male doctors 4.5 years to do it. i had been written off as an anxiety case before that and they left me to suffer every day. i lost 4.5 years of my life. i was finally put on flecainide after an EP realised i had SVT and it's worked beautifully, only for around 2.5 weeks now, since i had my flu vaccine and also had an extremely traumatic double tooth extraction last week where i was petrified and bleeding badly for hours, my heart is messed up again in spite of still taking flecainide, 50mg twice a day, and this has brought me way down again. it's only worked for 3 months ffs. what now. why cant these drugs just WORK and stay working