Gave Flecanide the flick.

[Snobes]

Hello

Have had afib for over twenty years, had two Ablations during that time with some good results however last year the episodes became more frequent with it becoming permanent early this year.

Last Friday the specialist advised that seeing I now have it full time to stop the Flecanide immediately as it is of no use so after taking 2x100ml tablets for twenty years i stopped cold turkey as instructed as the cardiologist said there will be no withdrawal symptoms so lets hope he is right.

Regards

[CDreamer]

I also stopped without reducing - but I hadn’t been taking it for more than 2-3 years. No withdrawal symptoms

[Hidden]

It’s also what we have been told at our support group meetings, good luck

[meadfoot]

I stopped it prior to a EPStudy and EP said to not take it regularly any more keep it as pill in the pocket to take if needed. I didn't have any side effects either.

[secondtry]

Thanks for posting and all the replies. I don't see the logic in stopping suddenly rather than reducing it slowly, given that is a strong drug and when you have been on it for years. However, you can't argue against the facts as per the replies. I have been on it for 4 years and would dearly like to cut it down to 100mgs/day from 200 and would need a good reason from my cardiologist to stop abruptly rather than follow my instinct to reduce over a number of months to the new level.

[Callingbird]

Being relatively new to this forum and to AF, I have to say I find it heart warming that you have had AF for 20 years! I expect to die every day with it! I too take flecanide but am not in permanent AF. I wonder if I should take it at all. My GP prescribed it. I am waiting for an appointment with a cardiologist to discuss the meds. All the people I know who have AF, with the exception of one, carry Flecanide and Bisoporol for emergency use only. I take them both everyday. I find it all so confusing.

[KMRobbo in reply to Callingbird]

Callingbird I have had the same advice , I was in paf which was getting more frequent, and I had a week long episode which was only terminated with an IV flecainide infusion. I was then put onto 2x 50mg flecainide and 1 x 200mg diltiazem (I can't take bisprolol)

I asked why I could not go on PIP and the answer was that it was better to keep me out of afib rather than get me back out of afib once in it.

I was not sure whether "better" meant for me, or for the fact I may visit the a&e less frequently! However I was referred for an ablation at the same time so I did not argue. (and I understand a&e is busy)

If you are having problems with the meds I would suggest you discuss the pip approach with you EP. I never really got on with flec and diltazem.

[Snobes in reply to Callingbird]

I must tell you that for the first 18 years the Flecanide kept the heart in normal rhythm and it is only the last two years that the episodes increased to at one stage it was 6 days in normal rhythm and 6 day in afib but it then became permanent. I had two ablations in the period but now at my age which is 78 they feel to try any more procedures would be too dangerous. In my opinion it was only the flecanide that gave me any quality of life but now I have to grin and bear it but you weigh up your options very carefully before changing any medications or procedures.

Good luck

[Callingbird in reply to Snobes]

This all gives me hope. I have only had two episodes of AF in 6 years. I sometimes get ectopics. The flecanide and Bisoporol seem to stop AF happening. I have been debating whether to come off them both because I have no idea what they are doing to my heart. By the sound of these replies, I should just stay as I am. Thanks

[sdalen in reply to Callingbird]

Actually, if you look up the bp meds ACE and ARBs, you will find that they can block electrical remodelling of the heart. Had had two afibs, two years apart, 10 and 12 years ago....so far so good but I am also on an ARB. (candesarten..32mg). I didn't do well on beta blockers. I got a two month run of PACs, which was disturbing and I cannot think of where they came from other than a reaction to the steroid eyedrops I had to take for cataract surgery. It is denied, but it happened three days after the surgery and sometimes I could taste the eyedrops on my tongue. Who knows....perhaps a reactor to it.....but I had a rectal bleed from a NOAC then a colonoscopy (ok) and after the colonoscopy, been in sinus rhythm (hopefully staying there). I am losing weight, taking magnesium, continuing with my walking (hopefully biking soon) and am on a low carb diet (simply carbs give me heartburn..so why annoy the vagal nerve?). Both my afibs, btw, were vaguely stimulated. I was told I could go on flecanide and/or have an ablation but I never had another afib. That said, if and when I do and because of the se of these NOACs I will consider a WATCHMAN device plus ablation.

[cuore in reply to Snobes]

Interesting since there are people in their eighties who have had ablations. Were you given a reason why it was "dangerous" other than your age?

[Hidden in reply to Callingbird]

My mom was diagnosed with persistent a fib at age 70, lived a good active life until she died at age 97. So, have hope!💜

[Snobes in reply to Hidden]

I am 78 so you have just made my day

Regards

[Callingbird in reply to Hidden]

That is amazing. Did she take any meds for it?

[Hidden in reply to Callingbird]

She was on lanoxin, warfarin, thyroid drug and I think coreg. She could run circles around me. Plus her drinks were coffee and pepsi, no water. Amazing to me she seemed to be in perfect health other than a fib which probably came from a broken heart when my dad died, she had a heart attack then bypass surgery then a fib.

[Callingbird in reply to Hidden]

Awww mine too comes from a broken heart, but therein lies another tale. What an incredibly, positive story about Afib. Thanks.

[Hardjuice in reply to Hidden]

Ignore my last seen the drugs list

[Hardjuice in reply to Hidden]

Can I ask what drugs your Mam taking please

[sdalen in reply to Hidden]

THANK YOU!!!!

[jwsonoma in reply to Callingbird]

Hey Callingbird,

My Doc told me that every AFib event jams calcium ions into heart tissue which makes it more conductive and easier to have another event. Thus the saying A-Fib begets A-Fib. He also said they are continuing to make rapid advances in ablations so the longer you can postpone it the better. I read but don't know if it was just speculation that some who stay out of a-fib long enough can undo some of the conductivity. A final thing he said was loose all belly fat. Be as healthy as you can will reduce stress and A-Fib.

My advice is know your triggers.

I started with 1 the first year, 3 the second and now that I am on Flec none for the last couple of years.

[Callingbird in reply to jwsonoma]

Thank you for that. belly fat...oh eck! I have some work to do then! I did wonder if weight had a huge bearing on it. Thanks for the reply.

[sdalen in reply to Callingbird]

Belly fat indicate visceral fat around the heart which can and does cause electrical problems, including ectopics. Anything that presses against the atrium will do that, including a belly. Sleep apnea is also more common with belly fat and belly fat acts like a HUGE inflammatory organ. I am on a low carb, and mine is drifting away. I also walk everyday and take magnesium. My bp and heart rate are well controlled with candesarten. So yeah...good nutrition and losing excess fat improves anything, including Afibs and ectopics. Nothing like throwing in mindfulness meditation as well.

[Hidden in reply to sdalen]

My EP pretty much said the same to me 2 yr ago at onset. Told me if I made the lifestyle changes, a fib would be " less aggressive". So far I have found that to be true.

[Callingbird in reply to Hidden]

They cardiologist I saw told me that I was now at higher risk of stroke and to relax when I went into Afib and it would go. To 'try losing a bit of weight' but he didn't discuss the reasons why and the consequences of keeping the weight on (I did lose 3.5 stone). That was it! He more or less patted me on the head and sent me on my way. In fact, 6 years on, I have requested to go to see another cardiologist to discuss it all.

[Hidden in reply to Callingbird]

I saw a cardiologist who didnt even give me any advice other than take these pills. After 4 months of struggling with the meds, I asked for second opinion and saw an EP, who is an professor at the medical school. He immediately took me off the meds, gave me a long talk about lifestyle changes. I was impressed that the ablation doc was lecturing me about life and health, no mention of ablation until now, 2 yr later.

[Callingbird in reply to Hidden]

Amazes me how they can so dismissive! I came out terrified. As far as I was concerned, I would have a stroke that week and certainly would not live until the Christmas! I was very anxious. It was my GP who eventually put me on the drugs I am on now. I have dug and delved for information since and lots of it is conflicting, but then I found Sanjay Gupta. So much information and so positive too. Then you guys were waiting here. I have found out more about Afib in the last few months than the last 6 years. Thanks for answering.

[Chris147]

I take both every day as I spent three occasions in resus and could not stand the unpredictability of never knowing when it would kick off. Still get ectopics but some days I forget I have a heart if you know what I mean. I can't worry about the what ifs I don't like taking tablets but I can't stand the awful times when I feel so worried. It is a horrible complaint but it is being managed. Best wishes Chris x

[Snobes in reply to Chris147]

In your situation it is the best way to go.

Good luck

[AllyAF]

I have to say that I was under the impression that Flecanide should only be taken for up to one year because of the possible side effects. I was on 150mg a day but after my ablation reduced gradually down to zero over a period of 4/5 months on the advice of my cardiac nurse. I do keep some at home as a PIP - just in case but have been fine.

[dmac4646 in reply to AllyAF]

Have been on Flecanaide for 10plus years and have just had echo and stress test - cardio happy with that and no side effects better than worrying about af

[Snobes in reply to dmac4646]

Yes I was happy with it for all those years so I agree it is better than worrying about it.

Regards

[Beta44]

I was on 2x100 mg Flecainide for 20 years and stopped immediately on the day of my ablation. No problems at all, rather the reverse, as the Flecainide was beginning to have nasty side effects.

[Flaka]

I was diagnosed 3 years ago and put on Flecanide and metoprolol but side effects were worse than the supposed help. I now take only a beta blocker, Coreg, and anticoagulant, Pradaxa and just work thru the episodes and feel much better than when I was on Flecanide.