Coming off flecanaide

[stoneyrosed]

Hi everyone, After my second ablation which only took about an hour (RF) the EP told me to stop taking flecanaide but to carry on with beta blocker and anticoagulant. I thought you were supposed to ween of flecanaide? I never got chance to speak to the EP as I was discharged before he visited the ward the following day, I have to wait for the 3 month follow up phone call. Can anyone reassure me that coming straight of flecanaide after ablation is a good thing? Many thanks and happy Father’s Day to the Daddies ! Ps I am still in sinus mode 15 days after the ablation.

[BobD Volunteer]

Personally I was never able to just stop anything. I was on propafanone not flecainide (similar type ) and eased my way off this over several weeks by gradually reducing dose until I was taking it every other day and then stopped.

Why not ring the arrhythmia nurse where you had the ablation and ask her?

[stoneyrosed in reply to BobD]

Thank you Bob I will do just that.

[Bagrat in reply to BobD]

Agree , there may be no lasting harm from a medical perspective in " just stopping". It can however be most unpleasant for the person doing it! Another example is steroids. There is no medical adverse effect ( allegedly) in stopping steroids suddenly after less than 4 weeks treatment. It is however pretty naff for many folk taking them to do that.

[stoneyrosed in reply to Bagrat]

I must admit I don’t feel ill, getting an odd 2 second flutter on occasions but that I believe is to be expected after ablation. I was just asking the question because I have read on this forum that you should ween off flecanaide. I have mailed cardio nurse on Bobs advice and I’m waiting for reply. Thanks Bagrat.

[ETHEL103 in reply to stoneyrosed]

I had to stop a nearly full dose of verapimil straight after flutter ablation 5 weeks ago.I know that's a rate control tho.Another friend kept taking hers and is weaning herself off.

[mjames1]

Some ep's keep you on flecainide for a period of time after an ablation but your doctor apparently didn't. Maybe because of the nature of your second ablation.

You generally wean off beta blockers. You do not have to wean off flecainide. I would threfore follow your doctors protocol, but as mentioned, can't hurt to double check the instructions.

Jim

[stoneyrosed in reply to mjames1]

Thanks Jim, My Cardio nurse can be a bit grumpy with his replies but would just like confirmation for peace of mind.

[pottypete1]

There is no hard & fast rule and my take on this is these EPs all have a different approach.

I have had 7 ablations. Once I was told to stop taking Flecainide after an ablation and 2 days later I was back in AF.

I have not stopped taking it from that day to this.

I now have very few AF episodes (probably 2 a year) and I would be very reluctant to stop taking Flecainide now.

Maybe things will change when snd if they give me the pacemaker they keep threatening. 🙂

Pete

[stoneyrosed in reply to pottypete1]

The plan for me was to have this second ablation so I could eventually come off all meds, I just didn’t think he would take me off flec so soon. If I stay in NSR I will be over the moon. But yes flec had me stable for a good 6 month before ablation.

[jeanjeannie50]

After my last ablation (3rd) my EP told me not to take tablets anymore, just my Warfarin. I felt wonderful and my daughter, who visited me in hospital that evening, said you're just like your old self again mum. Next day as I prepared to go home my heart took off racing and I felt dreadful, an ECG was done and I was kept in and put back on my Flecainide and Metoprolol. That was in July 2016 and I'm still on those tablets now.

Jean

[stoneyrosed in reply to jeanjeannie50]

Yes Jean that’s what I am worried about. Well so far I have managed 12 days NSR. Fingers crossed 🤞

[jeanjeannie50 in reply to stoneyrosed]

I really hope after all those days that you'll now stay in sinus rhythm, it's certainly looking very positive right now. How are you feeling?

[stoneyrosed in reply to jeanjeannie50]

Hi Jean, I keep getting a little 2-3 second fast heartbeats and unsure what they are, cannot catch them on Kardia. Apart from that I seem to be ok and in permanent NSR. Today is my 13th day since ablation so very early days, but the little flutters are making me slightly anxious. Thank you for asking Jean x

[jeanjeannie50 in reply to stoneyrosed]

Don't forget that even people without any heart rhythm problems can get little fast runs, we notice them because we're super aware. Also after your heart being restrained by pills it needs to find it's true tablet free rhythm. I wouldn't worry at all at the moment.

[stoneyrosed in reply to jeanjeannie50]

Thanks Jean, that resssures me 😊

[willec49]

I had my ablation 3 months ago and I have my 3-month appointment tomorrow to have a monitor attached to my body for two weeks. I’ve been kept on flecainide during this entire time but was told to just stop one week before this appointment which I did. I was episode-free for 8 months before the ablation on Flecainide. I noticed an increase in energy right away after stopping the Flecainide.

[stoneyrosed in reply to willec49]

Yes I was fine for a week after the ablation and then noticed these little flurries. Hope your follow up goes well 👍

[Singwell]

Personally I'd be weaning. And it's what was suggested after my first ablation when I cut down to 50mg am and 25mg pm pf Flecainide. 15 weeks on from ablation number 2 and taking it slowly but the plan is to reduce to 25mg X 2 with agreement of my EP as my BMI is low.

[queseyo]

Hi, I had been on Flecainide for a few years with my Cardiologist. I was filling very sick without energy at all, and he wanted me to have an Ablation, but I would NOT be taken off Flecainide, which I know it was killing me, for that reason I refused to have an Ablation. So, my GP suggested me to see an EP who, after a few tests, took me off Flecainide and Sotalol and put me on Metoprolol instead, and to continue with Digoxin and anticoagulate as I was. I’m feeling much better since then. We are all different, but this comment may help you to be confident with your EP, if you are feeling fine. Flecainide, supposed to help with the Heart Rhythm, but it didn’t help me. I read an article, that it’s more important to keep the Heart Rate low than trying to fix the HR. All the best.

[stoneyrosed in reply to queseyo]

Thanks for reply, we are all different and I assume the cardio knows my heart better than me in a sense of a medical point of view, I tend to follow their advice but also need the confidence to ask relevant questions when needed. Thank you !

[secondtry]

Many medics say you can just stop Flecainide cold turkey.

Be your own master, Flec is a strong drug which the body has to get used to and then get used to being without. Check with your cardio/EP first but unless you are advised there is a significant risk in reducing it slowly over 6 months or more, then I would reduce slowly on the basis there is more upside than down side...sorry rarely clear cut winners with drug decisions!

[Hylda2]

Have not had ablation but was taken off Flecainide as wasn’t working. Cardiologist said come straight off. EP said reduce by 50. Ie 100 m and e. 50 m and 100e. Two weeks later 50 and 50Came straight off. No problems

Di

[stoneyrosed in reply to Hylda2]

Thanks Hylda

[Lucymoo]

Everyone’s different in how they stop drugs such as flecanide. Following my ablation I was advised to stop it and then stop the beta blocker. I stopped both no weaning off and it went ok. Had a couple off days stopping the beta blocker but not sure if that was the ablation. Use flecanide now as a pip and used maybe 3-4 times in a year which you could consider?

[stoneyrosed in reply to Lucymoo]

Thanks lucymoo

[bassets]

I have stopped flecainide after my ablation by weaning myself off. This took a while, but worked. I now have it as a PIP. I think how you do this is up to you and how you are feeling . I hope you carry on feeling well .

[stoneyrosed in reply to bassets]

Thanks Bassetts 👍

[stoneyrosed]

I got the usual short reply from cardio nurse and he says: “Stay off and try to ignore brief flurries, cheers.” I have mailed him back to ask if af breaks through can I take a flec pip?

[Fullofheart]

That's a shame its such a brief reply. Well done for pursuing/ checking.Exactly what I would have done.

[stoneyrosed in reply to Fullofheart]

Thank you

[Steve_]

I had to drop off Flecanide slowly. I found I got a lot of ectopics each time I reduced the dose. I waited each time for them to stabilise before cutting further. It could have just been coincidence but it certainly felt causal.

I would say reduce slowly over a few weeks.

[stoneyrosed in reply to Steve_]

Thanks Steve

[KMRobbo]

I remained on 2 x 50mg flec until a few weeks prior to my 3 month post ablation reviews when I was told just to stop it. I think I went to 1 x 50 mg first for a day or 2 but that was me not EP. I had no issues. Suspect the reason I came off prior to post ablation review was to see if the Afib returned without the flec to control it, so the facts were known befire the review. It did not. Hope the same is true for you

[Malmac]

Hi,I recognise your apprehension - I was told to do the same - although the instruction was to wait 3 months after ablation then stop Flecainide (no weaning!!!).

As I was on maximum doze, including pill in pocket, & pretty much dependent on the meds I was apprehensive. So I phoned the EP’s secretary just to check (as no discharge letter mentioned any of this). Was really fortunate in that EP phoned me back & reassured me that it was best way.

So took the advice, and first week certainly felt withdrawal symptoms - a bit shaky, feeling like I was going into AF episodes, and wanting to take the PIP. But have to say that after that initial blip have not looked back and pleased that I followed their instructions.

Goodbye Flecainide - hope you manage to do the same.

All the best.

😀

[dave152248]

Hi, I had an ablation done on the 10th feb this year which I had amazing results, finally got my life back. At the end of may I was told to reduce my twice a day 100mg flecainide to once a day, 3 weeks later at 1am i went back into AF for 3 hours I'm now back on flec 100 mg twice a day. I really thought that was it, no more AF well it seems that's not the case. Good luck

[stoneyrosed in reply to dave152248]

Sorry Dave it’s awful isn’t it. All that hope and then out of the blue back it comes. Yes I am worried about coming off the flecanaide so soon but they are the experts so I just follow what they say for the best in all good faith. I wanted to come off the meds, that was the reason for the ablation so all I can do is cross my fingers and hope for the best. Thanks for reply👍

[dave152248 in reply to stoneyrosed]

Your the same as me, I wanted to come off all the meds, just don't rush it, thats all i'm saying. It's really disappointing when you think that's i'm fixed then you slowly fall back into AF again. Hopefully for me this is a one off. Good luck.

[wyo19]

Hi, I was on flec pre ablation. I weaned off before my procedure (not AF , but RVOT VT) weaned very quickly, reducing amount over just a week or 10 day period.. went into the procedure with no meds, and haven't taken flec since! If you're concerned to stop cold turkey, I think no harm in weaning. I also had flutters /ectopics post ablation but they were minor and reduced After a few months. One nurse told me the ectopic meant my ablation didn't work, another told me it was normal! I'm 2.5 years post ablation and get occasional flutters , but my VT has never returned and as Jean said, everyone gets these, we're just super aware. Hope you get off flec and feeling great!

[stoneyrosed in reply to wyo19]

Thanks WYO 👍

[Sfhmgusa]

I stopped flecainide immediately after my successful ablation#2 I had nonproblems at all

Steve

[stoneyrosed in reply to Sfhmgusa]

That’s great, how long since you had ablation number 2 sfh?

[Sfhmgusa]

It was 18 Nov 2020 so 18 months of NSR and only anticoagulant as meds I feel brilliant

[stoneyrosed in reply to Sfhmgusa]

Wow fantastic that’s encouraging. Hope you keep well and thanks for the reply 👍

[wyo19]

Hi cococrush, I actually didn't have too many bad side effects from flec. But I didn't like that it came with a black box warning. I didn't feel too well during my time on the medication because of the arrhythmia I was experiencing, but I don't think the flec gave me too many side effects.