I have been on flecanide for seven years. How long can you stay on it.?

[Jeff8288]

Flecainide

[BobD Volunteer]

As long as it helps.

[Finvola]

Jeff, I've been taking Flecainide for 7 years also and my cardiologist is quite happy for that to continue as long as I am stable and have no adverse effects with no ECG changes. I have an ECG and see him every six months - during lockdown the talk was by telephone.

Long may it continue - I take 200mg daily.

[francesturpin in reply to Finvola]

Do you have shortness of breath when walking?

[Finvola in reply to francesturpin]

I'm probably more breathless than I was before AF and ageing hasn't helped but I can do almost everything I used to be able to do, if more slowly. I can walk fine and walk uphill without too much difficulty.

[Frances123]

2x50 daily. Annual blood test. 17 years and counting.

[Singwell in reply to Frances123]

That's what I wanted to hear 😉

[Morzine]

I have no idea I’ve been in it three years, it’s been good for me so I haven’t thought about it.Sue

[secondtry]

Good question! I have not seen any research into this, which is surprising given the length of time it has been out there and the number of people on it. My cardiologist is for me a tad complacent on my annual review. If I am fine, he just recommends I keep taking the same dose, no reduction, no check-ups not even an ECG or kidney/liver function (I push my GP for these), nor any suggestions as to how to combat a loss of efficacy as I get older - having said all that he has been right for 7yrs starting at 60yo!

[Bob56]

I was first prescribed Flecainide nearly 30 years ago, and have been on it solidly for at least 20 years now. Admittedly, I don't have a large dose, but I've been fortunate to have no side effects, and I consider it my friend.

[francesturpin in reply to Bob56]

Did you ever have an ablation? I had one for flutter three months ago but they discovered I have Afib as well so I'm taking flecainide. Not sure whether to continue with meds or go for another ablation. My EP says afib will eventually break thru the flecainide.

[Bob56 in reply to francesturpin]

I did eventually have an ablation. You're right my EP said that Flecainide can only protect you up to a point. I found my AF episodes just got longer and more frequent, and finally the Flecainide just didn't work anymore. But, even after my ablation, I did still get the odd Af attack, and we decided that I should go back on the Flecainide again. That was 5 plus years ago, and I have been relatively AF free since then. My cardiologist described the ablation as having reset the heart, or put it back to where it was maybe 15/20 years ago. In other words, it has made the Flecainide more effective again. Right or wrong, it seems to have worked for me. I have no regrets about having the ablation, but feel I will only opt for another one if, and when, the Flecainide no longer works again. Others will say that the second or third ablation was the one that did the trick for them, but I would prefer to have that option up my sleeve, for now at least. and see if I can get a long way on my current regime ( which also includes a small dose of Bisoprolol).

[francesturpin in reply to Bob56]

Thank you Bob56, I really appreciate the information.

[Jeff8288 in reply to Bob56]

Thank you for info. I have had 3 ablations already

[Thomas45]

I was on it for 12 years, 10 of them at 150 mg x 2 a day. Reduced episodes to 1 or 2 a year. After 12 years of taking it I was found to be in asymptomatic persistent AF, now agreed to be permanent so I was told to stop taking it.

[Andyt36 in reply to Thomas45]

Hi Thomas that's interesting so you took at total of 300 mg per day right?

[Thomas45 in reply to Andyt36]

Yes, and although that's the stated maximum I was told to take an extra 100mg a day if I had an episode, but for a maximum of 7 consecutive days at a time. In the event I can only remember taking the extra 100mg a day on three consecutive days. I am above average height (6' 7") and at the time weighed about 18 stones.

[Andyt36 in reply to Thomas45]

Thank you

[Patient007]

I've been on it since 2003. I take 50mg 3 times a day.

[francesturpin in reply to Patient007]

Did you have an ablation? Do you have atrial flutter or afib?

[Patient007 in reply to francesturpin]

No Ablation. I suffer from atrial fibrillation.

[pottypete1]

I have taken 2 x 100 mg per day for over 30 years.

Likely to continue for the rest of my life - I am 74 right now.

Not quite sure what life would have been like without it.

Pete

[francesturpin]

My cardiologist says afib will eventually break thru. Still trying to decide whether to have second ablation. I have a doctor's appt. In two weeks still having shortness of breath.

[Jeff8288]

Thank you for all your replies

[Towne]

have been on it for 36 years starting as pill in the pocket every 2 -4 months as as 100mg - 200mg for approx 10yrs then prescribed a daily dose of 200mg now up to 400mg daily (divided into 2 doses) which generally keeps it in SR for 2 - 3 months at a time (Note 400mg is the max daily dose and for me has been a gradual increase in dose over 36years as tolerance & episodes of AF have gradually increased)

The only noticeable side effect I experience is mild double vision / light headedness after taking the morning dose which means I avoid driving for a 2-3 hours (best take it early)

( I'm 61 and was initially diagnosed with paroxysmal AF at age 20 (family history of AF)

Wouldn't be without it!

I'm currently contemplating an ablation -and have an appointment pending with a electrophysiologist.

[Jmbrph in reply to Towne]

Wait for the new pulsed field ablation. I’m in. Clinical trial and when the FDA approves it, it’ll be the best in cardiac ablation.

[Andyt36 in reply to Towne]

All these responses make a very interesting read. Many people say 300mg is the highest does. Interesting to see that you are in 400.