Needing encouragement to cut back on Flecainide, post ablation!

Others have spoken of this dilemma, too; what did you do?

Afib started Jan 2016. Ablation was September, 2016. Post surgery, took 75 mg. Flecainide. Gradually decreased to 50 mg. Occasional palpitations, but can't complain too loudly.

So here I am 7 1/2 months post ablation, trying to get the courage to drop to 25 mg Flecainide. EP doc said it was OK to do that (but typically, the next step is to stop Flecainide altogether, and see how it goes.) The pills are hard to cut (25 mg Flecainide is not made) and they smash into little pieces.

If you have a similar story, would you please share how you mustered up the courage to finally stop the anti rhythm drug after your ablation? Also HOW LONG did you continue taking anti rhythm after your ablation, before finally stopping?

THANKS! I only took 25 mg this morning...worried. :-/

28 Replies

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  • I was quite keen to give up flecainide! I was taking 300mgs per day. I dropped 100mgs on the day of my ablation, and took 100mgs x 2 per day for 6 weeks and then dropped to 50 mgs x 2 per day and then dropped to nothing following my first post ablation appointment which was about four months after the ablation.

  • Thanks, Rellim. And no afib now. Awesome.

    I would LOVE to give up Flecainide, just nervous about doing so.

  • Actually I do have A Fib occasionally. No problem! If it doesn't go away on its own I can take some flecainide. I much prefer taking it when needed than on a daily basis.

    I hope you will feel brave enough to give up the tiny dose you are taking.

  • The whole point of ablation is that it should enable you to be drug free. Try taking it every other day for a week and so on. Only you can do this!

  • Thanks, Bob, I might try that.

    Do I recall correctly that you had a hard time giving up the anti rhythm drugs after your ablation? If so, how long did it take to finally take the plunge?

  • I had bad 24/7 AF and I was on rhythm control drugs for a few years. Coming up to my ablation, my EP stopped the drugs a few days prior to my ablation and I didn't go back on them at all until 8 years later when I got a tiny bit of AF back. Never had any AF during that 8 years.

    I did have some pills to hand if needed, but I didn't.

    Koll

  • 8 years before needing the assist of rhythm control drugs. That's wonderful! :-) And "a tiny bit of AF" is better than full blown issues. Crossing fingers for continued good results! And many thanks to our EP cardiologists.

  • I was told by my E.P. to stop taking flecanide completely 4 months after my ablation. He told me to go cold turkey and it wouldnt do any harm. I hadnt had any A.F. since the ablation but I was still taking 150 mg flecanide. I decided to comeoff it gradually but when I got down to 50 mg AF came back and stayed! I was then put in for a second ablation and the rest of the story is well documented but as the second ablation wasnt completed I was put back on a lower than before dose. This is holding AF at bay whereas previously it wouldnt have. My point is that I believe that scar tissue must have continued to form way past the 3/4 month blanking period and that the first ablation was more successful than was thought. My E.P. wants me to continue with the lower dose and considers the procedure to be a success (not sure what I think).

    As you have given yourself a good long period of time for scar tissue to be formed and as you are only on a small dose anyway I think you should throw caution to the wind and give it a go without flecanide. As Bob says, the aim of an ablation is to be med free if at all possible so you owe it to yourself to give it a whirl.

    Good luck and let us know how it goes. X

  • This morning I put up (filled) my meds for another week, which included the 25 mg flecainide. I'll go with it for this week, and then next week will give it a try. Thanks for the assist!

  • I'm not medically trained so I can only relate my experience but please bear in mind, your general situation may be very different to mine. At my first review, 6 months after the procedure, my EP said I could stop taking my daily dose of 2 x 50 mg Flecainide. He indicated I could just stop however, like you, I tried to reduce the dose gradually, but as you say, this was not easy. So after 2 days of trying, I just stopped and a couple of days after that, I did have a brief episode of AF. That was almost 2 months ago, and so far, so good. Just taking Diltiazem and Apixaban at the moment, and provided my BP (and everything else!!) continues to behave itself, I may be able stop the Diltiazem in August......hope this helps.

  • It did help; thanks for sharing. It boils down to 2 options.

    1. Continue small dose flecainide, maybe indefinitely. Using rhythm control medication feels more reassuring for keeping afib at bay, but on the other hand, I want to stop Flecainide for an assortment of reasons. If afib returns, then move on to a new plan using Dr's advice.

    (I can easily convince myself to "wait another week" before taking the plunge; there's this or that activity on the calendar that I don't want to miss. The chances of moving forward with these plans seems more likely if I continue the Flecainide.) :-/

    2. Stop Flecainide and see what happens.

  • Decisions, decisions....I'm sure you will fine if you follow the doc's advice.......good luck

  • I had cryoablation ablation almost two years ago and was told to come off 200mg daily Flecainide on the day of procedure. This caused no problems. I stayed on a modest dose of Bisoprolol for three months to moderate my heart rate. Now off all drugs and no sign of AF. I would follow your medical advice and would certainly not take a dose of Flecainide on alternate days as I not not think that fluctuating plasma levels would help.

    Regards,

    Peter

  • I found Flecanide to be a nightmare. I was never really sure what they meant by palpitations but I got the picture once they started me on Flecanide. I also felt what was probably flutter every evening. Given these side effects, I am surprised they did not stop the Flecanide prior to the ablation. In theory you should not need any drugs now and there is only one way to find out whether the ablation was successful.

    Speak to your doctor and get a reduction to zero plan agreed.

  • Amazing different how drugs affect each of our bodies differently. I went off of Flecainide 3 months after my second ablation. I've been AFIB free since the ablation (now 7 months) but the palpatations and PACs have been intolerable since going off Flec. Recently Went back on a low dose 50 mg 2x per day and severe palpatations have gone away. While I'm sure that I still have some PACs as most of us do, they are not noticeable at all and my QOL is back to normal. My doctor said that while Flec is a very strong drug, if you have no other heart issues (like me), and don't experience side effects from the drug itself, longer term use (if needed) can be better tolerated. I plan on staying on the drug for at least another 3 months allowing more time for healing post ablation, and then see how I do without it. Just recommend that you monitor how you feel when you go off of it.

  • Our timeline is similar in terms of ablation (7 months ago). My quality of life is night and day different than prior to ablation. That is why I hesitated to stop the 50 mg x 2 Flecainide, but in the same breath, I add that I still may have side effects from the drug, and know I should try stopping it altogether. Currently taking 25 mg (2 days so far!)

    My dr discussed options for management of Flecainide and possibilities of palpitations, afib recurrence, etc. It's up to me to decide what road to take. I also have no other heart issues, thankfully.

  • I was on Propafenone (antiarrhythmic) and Diltiazem and had to go cold turkey on the day of the ablation! It was quite scary but I was fine. Be strong 💪 😀

  • Thank you! I'll try! :-)

  • I was on bisoprolol and went cold turkey on day of ablation. I had lots of arrythmias for about 5 months, gradually reducing and then disappeared. That was in November 2013 and all good since. Finger crossed!

    Goid luck 🍀

  • That's wonderful! HAPPY FOR YOU! May it last forever. :-)

  • I was told to stop both Fleca and Metopropol 4 weeks after ablation. When I dared to question that advice I was just told: "No discussion about this, just do it as I say. That is our post ablation protocol." Just like that, cold turkey - I still insisted? "Yes, just like that".

    I had to trust him because of the large volume of ablations they do in a major New York hospital.

    I was on Fleca 100mg x2 for less than a year. So, I quit both of them and my heart remains calm which is almost 6 weeks from ablation. I have some other problems like getting quickly tired during a walk which is improving very slowly but that is not the problem you have.

  • I wonder why your doc stopped the Metoprolol. Your rate must not have been a concern. I still take Metoprolol, but have issues with heart rate sometimes being too high.

  • Yes. Metoprolol was lowering my blood pressure and slowing my heart rate making me feel tired.

    But, the main reason was that it was part of protocol 1 month after ablation.

  • Nev r took Flecainide...that was one of the reasons for my ablation! I didn't want to start! So I'm someone who's had an ablation (2.5 months ago) and never took a single pill of it! I think you'll be fine. Good luck!

  • Thanks! Wishing you well, also.

  • I was able to go off flecainide about 1 month post ablation. I had been taking 300mg prior to ablation.

  • just cut down to 25mg twice a day...no afib...only have had 2 times in 7 months...both times when I was stressed.

  • I finally did go off of Flecainide altogether. Was very apprehensive with that option, but thankfully nothing much changed. Have had palpitations occasionally, and a 30 second "fast rste" event, but not super fast and only lasted about 30 seconds.

    Stress is a negative factor for me, also.

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