Flecainid question

I have another question regarding flecainide.

Why is it often so that Flec no longer works after a certain time? Is it because the body gets used to the dose and demands higher and higher doses? Or is it because the substrate in the atrium has changed, i.e. there are altered conditions that the flecainide encounters?

I don't know if anyone knows the answer to that. I've never heard an explanation.

Okay, maybe one of the mysteries about this not well understood disease.

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Dirk
I have another question regarding flecainide.

Why is it often so that Flec no longer works after a certain time? Is it because the body gets used to the dose and demands higher and higher doses? Or is it because the substrate in the atrium has changed, i.e. there are altered conditions that the flecainide encounters?

And for some Flecainide seems to become pro-arrhythmic. I suspect that happened for me when I got to higher doses.

My EP said that Tikosyn loses effectiveness over time. I have been on it for 4 years. He said the longest it worked for any of his patients was 7 years. Is it just the nature of antiarrhythmics?

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FibberMcGee
My EP said that Tikosyn loses effectiveness over time. I have been on it for 4 years. He said the longest it worked for any of his patients was 7 years. Is it just the nature of antiarrhythmics?

It seems to be, at least for most of them. I don't think it happens with sotalol or amiodarone, but I wouldn't want to spend the rest of my life on sotalol and sure as hell not amiodarone. This is why reliance on antiarrhythmics just isn't a viable long-term solution. And the younger you were when it started, the less viable it is. I think your best options are ablation, Maze, or living with permanent afib. Antiarrhythmic drugs just aren't a good permanent solution.

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Carey

or living with permanent afib.

But how can you live with permanent afib? AV node ablation?

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Dirk
But how can you live with permanent afib? AV node ablation?

Many people do, and not necessarily with an AV node ablation. You live with it by taking a rate control drug to keep your resting heart rate under 100 and an anticoagulant to prevent strokes. Once those two things are controlled, the dangers of afib are controlled and your life expectancy will be the same as someone without afib. Of course, the feasibility of doing this depends a lot on how symptomatic you are. Some people feel no symptoms whatsoever so they don't even know they're in afib. It's an easy option for those people. But if you experience symptoms even when your HR is kept under 100, it's probably not a feasible option.

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Carey
But if you experience symptoms even when your HR is kept under 100, it's probably not a feasible option.

Thanks, Carey!

If it is not feasible, what would you suggest: AV node ablation which sounds quite scaring?

AV node ablation is the nuclear option. It should always be the last option when all the other options have failed because there's no undoing it and it locks you out of any other treatments. You didn't say whether or not you're symptomatic when you're in afib and your heart rate is controlled to 100 or less. That's key to knowing if the "just live with it" approach is viable. If you are symptomatic, then current medical guidelines in the US and Europe say that catheter ablation is the first line treatment of choice.

I had two PVIs and doctors are reluctant to perform a third because of a (mild) stenosis of the LIPV. Maybe PFA is an option, I will figure that out when talking to a doctor at Bad Oeynhausen (really big heart center).

At this time I am not in permanent afib so I don´t know how bad this will be.

My approach would be:

(1) continue Flec pip. If this fails:
(2) Flec regularly (2x50) then
(3) Flec regulary (2x100) then
(4) Propafenone regularly then
(5) maybe PAF (depends on what the doctor suggests)

If the time will come that afib is permanent I will try to live with it.

Amiodarone: No!
Dronedarone: Maybe.
Sotalol: Maybe



Edited 1 time(s). Last edit at 10/01/2024 08:15PM by Dirk.

Oh, right. Forgot about the prior ablations.

So how uncomfortable are you when you're in afib?

Dirk, Everyone is different. I have been on Flec 15 years 2 x 100mg). I think of going off it but I am dangerously symptomatic. Have never had ablation because I don’t get afib very often.

I do not think anyone has a definitive answer for why this may happen. I have been on Flec for 40+ years off and on between ablations. Mostly on. Probably the person on this forum that has been on this drug for this long. Still on a low dose because of my history. I still have hopes of being drug free one day. But in the meantime, this has helped. Everyone is different on how they respond and how long.

Thanks for your answers!

When I am in afib I am symptomatic but not too bad. I do not wait and see what happens, how long it will last this time, but kill it with 200 mg Flec in about two hours.

I do this about once a week. This is being regarded as too frequent by doctors for a pip approach but it works for me and I am fine with it

After afib terminates there is a relative calm until electrical instability builds up again and culminates in another afib attack. I am used to this.

My approach is to continue this way and switch to Flex 2x50 on a daily basis when attacks become even more frequent like twice a week or so.

I find it kind of reassuring that Flec obviously can work for many years - depending on the individual patient.

Furthermore I hope that there will be another drug in the future which is as effective as amiodarone but has not as evil side effects.

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Dirk
Furthermore I hope that there will be another drug in the future which is as effective as amiodarone but has not as evil side effects.

That's what Multaq was supposed to be. Basically, it's amiodarone with one iodine atom removed. The end result is it's quite safe and has few side effects, but it's also not nearly as effective. Although it's useful in some circumstances, it was pretty much a disappointment.

There is some research being done on potassium channel blockers that sound quite interesting.