Flecainide Stopped my Afib- Should I still get my ablation?

Hello all.

Flecainide completely stopped my 34% afib burden in its tracks. I can even drink my fill of coffee and have a few beers on the weekend. In essence, I got my life back. I suffer no side effects at all.

I am tentatively scheduled in April for a PFA ablation clinical trial. Of course, now that my afib is in check I feel less compelled to go through the process of an ablation. Thoughts on whether I should still do it or does the success of this drug give me a chance to kick the ablation can down the road a bit?

Everything I've read suggests that the afib will come back and overtake me again and that I will have to up my dosage. Thankfully I'm only on 50 mg twice a day so I have at least one dosage increase that I have in my hip pocket.

Thoughts on all of this? Anyone else have experience with this drug?

John



Edited 1 time(s). Last edit at 12/19/2022 10:08PM by Johnnyk80.

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Johnnyk80
Anyone else have experience with this drug?

Hi John, I've used flec, primarily on-demand to convert to NSR since 2004. This post summarizes my experience. I would say my experience and dosages are atypical.

Some folks here have used it chronically for many years, though most of them end up getting ablated at some point.

In addition to flec, I have a remission protocol I created that includes electrolyte supplementation (magnesium, potassium & taurine and limiting intake of calcium) as well as limiting exertion in long duration endurance activity to a Zone 2 level. Additionally, I am fanatic about keeping my metabolism pristine (glucose, insulin, BP, weight, fitness and etc.) through diet and lifestyle.

George



Edited 1 time(s). Last edit at 12/19/2022 10:10PM by GeorgeN.

I was on flecainide from 9-2004 to 8-2019. The first five years at 100mg BID kept me in nsr with no breakout episodes in nsr. Then 2009 I was admitted during three week’s vomiting marathon and I had an episode. Turned out I’m gluten intolerant. Then once a year on January 1st for some odd reason (I don’t drink) I had an episode after vomiting. Once a year wasn’t bad, I still considered my 45-60 minute burden easy. By 2014 it started up again and by 2019 I had a flecainide overdose and almost died. Just be careful not to exceed the dosage: 200mg maximum within a 24 hour if you weigh less than 154 pounds and 300mg within 24 hours if you weigh more than 154 pounds.
[www.afibbers.org]

For some flecainide is successful and can buy you time until new technology or drugs are available. I had a good run until I didn’t. I’ve heard it’s better to get an ablation earlier to nip it at the bud but I don’t agree. I think it depends on how symptomatic you are and how it has affected your quality of living because ablations have the possibility to cause flutter from the scar tissue that forms meant as a barrier to prevent afib. I think for me that flutter is worst than afib which I never had before my ablations.

If it wasn’t for the overdose I would had waited for the pulse technology to be mainstream and the kinks worked out.

Good luck and I’m happy you are on a pulse trial.

I have been on flec for about 6 years—75 x 2. No side effects. One breakthrough requiring a cardioversion. Have thought about an ablation but have not been able to pull the trigger—no pun intended. I often wonder if I am doing the right thing. But….

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Johnnyk80
Flecainide completely stopped my 34% afib burden in its tracks.

For how long?

Considering there's still no cure for AFib, I'd go for the "lightest efficient choice".
Flec works with no side effects? Why bother with an ablation? One can stop taking a drug. When the burns are done in one's atria, they're done. For the best and the worst.
Ablation is commonly efficient. It's likely the most efficient treatment to date, but it does not work for everyone.
I've been 4 times ablated. No regrets, since meds didn't work for me. Some people here have had more than 4 procedures, the last one being successful to date. Mine hasn't and I'd go for a fifth one if it had great chances to work.
It's always a question of balance. Quality of life vs risks. Ablation is not required. NSR is even not required for patients being fine with a rate control/blood thinning option.
GeorgeN and Susan.d gave you very good advice. And I think Mark is right.

I was on flecainide 50mg BID for about a year; it worked great for me…no episodes and no side affects. Then abruptly it didn’t and I started having frequent episodes; so I tried upping the dose (under Dr supervision) by adding just 25mg. No dice, i immediately started having severe side affects. I went back to the original 50mg BID dose and it took about 2 weeks to get the extra dose out of my system and stop experiencing side affects. Obviously Iam very sensitive to flecainide. This all made me feel very anxious as the Flecainide was no longer as affective as before and I couldn’t up the dose. The thought of the possibility of the Afib getting totally out of control and having to wait perhaps months for an ablation from an experienced EP worried me a lot. So I expedited an appointment with Dr Natale and signed up for a PFA last June. I am now off all medications and doing well so far; fingers crossed it continues, I am not aware of any reason it won’t. I would recommend keeping the April appointment for now and see how the Flecainide works for you, then make a decision; you can always cancel.

Just to add to the mix. My experience was very similar to those comments before me. Flec worked great (dose 100 x2 a day) for 4 years, only few breakthroughs, but gradually they became more frequent and longer. Was told to up the dose to 250 and within a few weeks I required 2 ER visits with uncontrollable 175+ steady BPM. Ablation was my next option other than trying another drug So far the ablation hasworked and as posted earlier, easy and painless and no problems at all. I say, go for it, Flec will only last so long. PFA would absolutely be my next choice if I needed another ablation.

Like others, I took flecainide successfully for many years – starting with 50 mg BID and moving up in dose over the years as I had breakthrough Afib. Last February flecainide gave me complete heart block so that was it for me and flecainide! I was put on Multaq, which was not very effective, leading me to seek an ablation. By the time I had the ablation in November, I was getting Afib and flutter every day and required an extensive ablation. Reading other people’s experience with Flecainide may help you to make your decision—good luck with it.

I've been on Flecainide for 3 months.

New study just published in the NEJM, by our own local University of British Columbia Cardio Institute, shows that in the long term, cryoablation is better than AAR medicaments...of all kinds.

Things to keep in mind: once you have AF, you have it for life. It might be temporarily allayed, but it will return at some point, even with ablation. Note that only 75% of first ablations are successful, and that approximately 80% of second ablations are successful. AAR's are mostly successful, but are time-limited for almost everyone; eventually your symptoms return. So, you CAN, and often DO, feel much more secure and are more relaxed in the initial months/years after taking an AAR and finding that it/they works. As you can see from previous posters, they are merely putting off the inevitable.

Second BIG point: you want to deal with this mechanically (vice chemically) as early as possible, but any time before you succumb to persistent AF. Once your AF is persistent/permanent, ablation is almost never going to be accepted as a method by a competent electro-physiologist.

To sum things up, you now have a progressive disorder. It will morph over time into an uglier form, but half the ugliness will be how you feel knowing you put things off.

If you don't have one already, get into a line with a good EP, and start consultations about how to get an ablation, and how long you can put if off. I suspect she'll tell you that you should try for no more than 12 months ideally.

Just my opinion.

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Carey

Flecainide completely stopped my 34% afib burden in its tracks.

For how long?

I've been on Flecainide for 3 months.

Okay, so it does work well for you. I'd say you can kick the ablation can down the road a bit, maybe far enough that PFA will be available outside clinical trials, but as you've probably noticed from many of the replies, it won't last forever. Flecainide almost always eventually becomes ineffective or even pro-arrhythmic. Could be months, could be years. No way to predict except that it WILL cease working someday. The problem, obviously, will be if it happens within months PFA probably won't be available yet and you will have missed the trial.

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Pompon
Considering there's still no cure for AFib, I'd go for the "lightest efficient choice".
Flec works with no side effects? Why bother with an ablation? One can stop taking a drug. When the burns are done in one's atria, they're done. For the best and the worst.
Ablation is commonly efficient. It's likely the most efficient treatment to date, but it does not work for everyone.
I've been 4 times ablated. No regrets, since meds didn't work for me. Some people here have had more than 4 procedures, the last one being successful to date. Mine hasn't and I'd go for a fifth one if it had great chances to work.
It's always a question of balance. Quality of life vs risks. Ablation is not required. NSR is even not required for patients being fine with a rate control/blood thinning option.
GeorgeN and Susan.d gave you very good advice. And I think Mark is right.

Agree with Pompon. I'd do the most conservative thing I could for as long as I felt it was helpful and not harming me in any other way. Ablation isn't always successful nor is it always free of side effects of its own. 100% cured with 100 of flec per day? I'd stay with that until it stopped working or you had to increase the dosage to the point it was risky. You are a long way from that I think.

I totally agree with keeferbdeefer (I like your user name). I never had flutter before my ablations. I wasn’t that symptomatic before my first ablation, my hr was 67-80 while in afib. I should had waited instead but life doesn’t come with a crystal ball. You seem to have time…just don’t increase flecainide recklessly.

I took propafenone for about 18 months. First year it worked 100% and then I started to get breakthrough pacs and eventually breakthrough Afib. I started getting side effects too.
I then got an ablation and have been good ever since. I’d ride out the flecanide while you can but if you get any side effects or it starts to be less effective, go for the ablation.

Monty



Edited 1 time(s). Last edit at 12/29/2022 01:54AM by montos.

Susan,
No cardiologist (or a recent visit with an EP who wanted to do the Cyro PV albation), has EVER suggested Flecainide to me. I had a light case of paroxymal afib from 2015 until last September. According to a 2 week Zio Patch I'm now in atrial flutter all the time. Since beta blockers lower my BP too much, I was given a prescription for a low dose of Digoxin in Sept. It really didn't do much, so I stopped it after a month. Have been contemplating a Natale ablation in the new year or possibly joining one of his PFA trials. But heck, I'm all for being on an effective drug and giving myself some time before having to do surgery. Guess I should be asking my cardiologist about Flec....

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californiagal
Susan,
No cardiologist (or a recent visit with an EP who wanted to do the Cyro PV albation), has EVER suggested Flecainide to me. I had a light case of paroxymal afib from 2015 until last September. According to a 2 week Zio Patch I'm now in atrial flutter all the time. Since beta blockers lower my BP too much, I was given a prescription for a low dose of Digoxin in Sept. It really didn't do much, so I stopped it after a month. Have been contemplating a Natale ablation in the new year or possibly joining one of his PFA trials. But heck, I'm all for being on an effective drug and giving myself some time before having to do surgery. Guess I should be asking my cardiologist about Flec....

Flec requires that you not have heart failure or have had a recent heart attack. If flec were appropriate, you'd likely need an electrocardioversion first. Then the flec. Since you've been in flutter continually, the Natale ablation is likely a more effective choice, in my opinion.

Also, from feedback from a member here that got a Natale ablation in Cali, I'd suggest going to Austin rather than CA.



Edited 1 time(s). Last edit at 12/30/2022 08:13AM by GeorgeN.

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californiagal
Susan,
No cardiologist (or a recent visit with an EP who wanted to do the Cyro PV albation), has EVER suggested Flecainide to me. I had a light case of paroxymal afib from 2015 until last September. According to a 2 week Zio Patch I'm now in atrial flutter all the time. Since beta blockers lower my BP too much, I was given a prescription for a low dose of Digoxin in Sept. It really didn't do much, so I stopped it after a month. Have been contemplating a Natale ablation in the new year or possibly joining one of his PFA trials. But heck, I'm all for being on an effective drug and giving myself some time before having to do surgery. Guess I should be asking my cardiologist about Flec....

We PM about your EP visit. That EP only likes amio. It’s his drug of choice. That’s why 5-7 years ago after my initial visit with him I decided to look elsewhere. On the other hand, some doctors are not flecainide fans, thus they don’t suggest it. I used to see a cardiologist in NY for years and he made a routine of after each visit he would approach the door to leave, then turned to me and said flecainide will kill me. It a dangerous drug if misused.

I recommend you snatch dr Natale’s offer to be on his PFA trials. Having a support group of friends living in Texas just makes it an easier choice for you since you will have somewhere to stay before and after your ablation.

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californiagal
Susan,
No cardiologist (or a recent visit with an EP who wanted to do the Cyro PV albation), has EVER suggested Flecainide to me. I had a light case of paroxymal afib from 2015 until last September. According to a 2 week Zio Patch I'm now in atrial flutter all the time. Since beta blockers lower my BP too much, I was given a prescription for a low dose of Digoxin in Sept. It really didn't do much, so I stopped it after a month. Have been contemplating a Natale ablation in the new year or possibly joining one of his PFA trials. But heck, I'm all for being on an effective drug and giving myself some time before having to do surgery. Guess I should be asking my cardiologist about Flec....

Yes, Flec is giving me my life back. It's a miracle drug as far as I'm concerned. Talk to your EP or get a new one.

John

Flecainide gave me my life back until 15 years later I got an overdose and almost died (according to the icu nurses). It’s a great drug if you don’t abuse it. If you weigh less than 154 pounds, then 200mg flecainide in a 24 hour period is the maximum. If you weigh more than 154# then 300mg flecainide in a 24 hour period is the maximum.

I appreciated the drug’s success until I took 300mg. I was lucky it worked so well for years until it stopped working and it became toxic for me.

Johnny, I hope you get decades of nsr success while on flecainide and you can buy time until new technology for ablations are perfected.

I have been taking Flecainide for eleven years, for Paroxymal Afib. Started out with 50mg twice daily, but after several afib episodes in 2016 my Florida Cardiologist, raised it to 100mg twice daily. I was also taking metoprolol 25 mg. I had several episodes while on this dosage. I then moved to North Carolina, where a Cardiologist there thought it was the Metoprolol that was causing my oubreaks. He had me stop it. Stopping that stuff was one of the scariest times of my live. My heart would race 200 bpm. It eventually calmed down, and I have not had an episode now in five years! I moved to Germany four years ago. In the entire time here, I have had no afib episodes. A few months back, I saw my Cardiologist, and he reduced my dosage. Then this past week, he said, I should stop it entirely. He said he though the Pill in the Pocket route was a good idea for me. Although he said I could stop it immediately, I read so many posts online that say you should not. So I am weaning myself off the stuff. I started this past week, and am now only taking 50mg twice daily, with no ill effects. Tomorrow I will try cutting that in half, and if no problems, I will then finally stop entirely. He told me that if I have an episode that lasts longer than 45 minutes, I should take two 100mg pills with a big glass of cold water. I am a bit worried as to how this will work. However I will be glad not to have to take it every day, if this works. He reminded me that Afib will not kill you. So I should not worry. He also said that Flecainide was not like Metoprolol. He said that what I experienced was because it works by lowering your Adrenaline levels. He said that when I stopped my body over reacted and produced more Adrenaline, causing the racing heart. He said Flecainide does not work that way, and will not cause any problems if I just stop. The only possibility is that my Afib could come back, and will at times. He said the fact that I had no ectopic beats on either of my Holters, that he thought it could be stopped. Not once was it ever suggested that I have an ablation. Even when I consulted with an EP.



Edited 1 time(s). Last edit at 01/22/2023 03:01PM by Ken S.