Flecinaide VS Ablation if I could do it again

[SteveCairns]

I’ve been on Flecinaide for over 2 years, first diagnosed with AF in 2013, twice daily 100mg. I’d been cardioverted twice and after the last cardioversion in 2016 I enquired about other options to keep AF at bay. My original Heart Specialist wouldn’t put me on Flecinaide as said too many side effects, so I switched Specialists. New specialist put me on them , about 2 months after last cardioversion while I was still in SR, and hadn’t had AF since. Beginning this year heart started to do weird things : slow shallow beats, then big beats, Eptopic beats regularly (but NOT AF),so , went to specialist with my concerns , he suggested (guesses)” maybe” my heart reacting to Flecinaide, halved the dose and recommended an Cryo Ablation . Had ablation in May 2019 by different specialists in Brisbane.

Within a few days recovering from the proceedure , lots of Eptopic beats for a week or so then things really started to settle down and I felt good ! Was recommended to wait a few months till AFTER ablation to stop the Flecinaide , which I did in September .

3 nights after last Flecinaide pill, things start to happen , felt hot, BP went up from 119/70 ( usual) to 160/95 , felt “off” , lots of Eptopic beats but no AF. Considered going to hospital , but then decided to take an AF pill to see what happens , as believed it was my heart reacting to coming off the Flecinaide . Within 30-45 mins BP wtarts slowly going down , next morning still higher reading than normal but better than night before and next day after re-starting Flecinaide back up things back to normal .

Feel once your body is on Flecinaide it becomes addicted , trying to come off it with my case , seems my heart either didn’t like the idea or maybe AF was trying to come back . Should mention AF didn’t come back , but other things certainly happening .

Since the episode after stopping Flecinaide , I noticed my vision wasn’t as good, so seems what ever happened to my heart that night it affected blood flow maybe and effected my vision . Still getting eptopics , had increased dosage 3 days ago but no improvement , so “maybe” either I’m not taking enough , or maybe my heart isn’t liking the increase , even though It almost seem it couldn’t live with out it .

And what’s my specialists take on this ? Not much !! ( probably cos he simply doesn’t know what’s going on) , suggests to “wait” till things settle properly and then try again to come off the Flecinaide more slowly ( which he didn’t recommend in the first place, just said to come of it cold turkey ). Two weeks now after that “episode” from coming off Flecinaide , still getting eptopics, vision not back to normal.

If I could do it all again , I probably would have optioned for the Ablation while I was still in AF, and kept away from the flecinaide . It may be medicine and help but it’s still all poison we’re putting into our body .

Note- Ablation was done while I was in SR, and I believe a basic ablation was done with a “let’s see what happens “ view - not happy about that , but it does line the surgeons pocket more if I have to come back for round two .

[CDreamer]

Hindsight is a wonderful thing.

Yes, Flecainide is a toxic drug and as with any drug it will affect people differently. Choosing a treatment which works for you is an art as much as a science.

Purely an observation based on posts from the forum - ectopics, SVT and other arrythmias seem to be much more common - after ablation.

These treatments are not without consequences and Flecainide is known to cause arrythmias as well as stop them. I am not sure you can become ‘addicted’ but it seems you personally must titrate down gradually. I just stopped and had no reaction. I took 300mg/daily before ablation and 200mg for 12 weeks following, then just stopped all meds apart from anticoagulation and just felt a lot better.

Keep positive, a positive mindset really does make a huge difference to how our hearts behave as stress is the No1 antagonist for inflammation = arrythmias.

[CDreamer]

As a follow up - the most commonly known study of Drugs v Ablation efficacy is the CABANA 10 year study - which showed no difference of efficacy.

I’ve just come across this study ncbi.nlm.nih.gov/pubmed/306...

CONCLUSION:

RFA is more advantageous in terms of recurrence rate of AF than drug therapy. In addition, the analysis suggests that this effect persists during long-term follow-up; however, these benefits appear to decrease with longer follow-up time. Finally, AAD performed better in terms of safety and had fewer adverse events.

RFA=Radio Frequency Ablation.

AAD = Anti-Arrythmias Drugs.

[BobD Volunteer]

Just to put you right on a few things.

Flecainide is not an addictive drug. There are no receptors in the body as there are with narcotics which can multiply and need more and more dug to satisfy. It is the heart getting worse which sometimes gives increased symptoms. AF begets AF so the more you have the more you will get.

Ectopics are not AF in fact one leading EP told me they are a good thing as it shows the heart is trying to go into AF and failing. They are frequently common after ablation especially in the first six months and often longer but usually fade away. If you look up breathing exercises the slow controlled breathing using diaphragm not shoulders usually helps teminate these.

Lastly being in NSR at the time of ablation is irrelevant. Doctors use either a special drug infusion or electrical stimulus to bring on AF during the ablation so that they can see from where it is coming. Here in UK doctors get paid whether they do ablations or not yet we do still often have to have more than one ablation. Hearts heal too well and do not produce the necessary scar tissue on occasions which is why you would have been told that a first ablation success rate was most definitely NOT 100%.

AF is a long journey I'm afraid and you are still travelling.

[bigking]

Steve: When my EP took me off Flecainide after my second ablation, I inquired if OK to stop the 200 mg or cut down. He said to just cut off. I didn't, I took it off gradually, 200/150/100/50/25 over the next month or so. No problems. Just my individual case, but worked for me.

[Rubymurray25]

After a few years of AF and a handful of cardio-versions I was told the best route would be an ablation. I was on Sotalol up until the ablation with flecainide as my PIP, after the ablation I was switched to flecainide 100mg x2 a day for three months and then told to go cold turkey. Quite frankly I was really nervous about coming straight off flec but did and it all went better than expected as I feel so much better all round, I am always very cautious not to push myself, don't drink alcohol and have a plant food diet wherever possible. Once again I think it highlights we are all so different, but somewhere along the line if we all share we will meet someone very close to ourselves!

[Thomas45]

I was on flecainide for about eleven years, starting on 50mg twice a day, but from the third year 150mg twice a day. I had no side effects. Then I was found to be in persistent AF. I saw the the local GP specialist, Dr Fay who confirmed that I was in persistent AF. He told me to stop talking Flecainide. He could see that I was a bit worried about that and said "Don't worry, nothing will happen" and nothing did. The only hiccough in my treatment was a well-meaning hospital doctor. While under general t for an unrelated condition my heart rate went over 190bpm. The hospital doctor put me on Bisoprolol. Once discharged the Bisoprolol kept my heart rate at around sixty bpm. Then after 7weekd the painful rashes started, intermittent, but each lasting 1-3 hours, sometimes following on from one another. Such rashes, urticaria, are a known very rare side effect of Bisoprolol. While I was being taken off Bisoprolol over 8 weeks, I had another (rare) side effect, a severe and sudden constriction of my breathing. I spent two nights in hospital.

I would much rather have GPs overseeing my atrial fibrillation than hospitals.

Bisoprolol was the trigger to urticaria, some element of it upset my body's workings. Although I came off Bisoprolol 18 months ago I still have urticaria, which is not controlled well with medication. Flecainide never caused any problems.