Hi everyone, just back from seeing specialist. Have been on flecanide since November. Had two mild bouts of Af this month. So felt quite well. But did want to try and get off medication a bit. Anyway found out this morning that flecanide can potentially damage your heart. Has anybody else had any problems? I didn’t know about this. Then it was decided for me to have another ablation which I agreed to but since coming back am having second thoughts after being reminded of all the things that could happen. So do I stay on flecanide or have an ablation. Should I Leave well alone? Been reading up about flecanide doesn’t sound that bad if it keeps A F at bay.
Flecanide or Ablation: Hi everyone, just back... - AF Association
Uuummhhh. If you are on Flcecainide you do need regular ECG monitoring - just to ensure you don’t develop more serious arrythmias. But then ablation does have side effects as well - some of them life threatening - very, very rare but milder longer term symptoms could mean that the scarring could cause further problems down the road as well so dammed if you do or don’t. I was on Flec for about 4-5 years - first as a PIP and then daily then I had 2 ablations which resulted in 3 years free of AF.
With that experience, knowing what I know now - which is very different to what I knew then - my choice would be:-
Lifestyle choices first - see if there is anything I can do to lessen the burden - look at nutrition, stress reduction, sleep and exercise.
Flecainide as a PIP if episodes are infrequent.
Ablation when episodes become more frequent and if only have Lone AF.
But everyone is different and it is a very personal choice. Do your homework and if you haven’t already - visit the AFA website and download all the information of treatments and side effects so you know what the story is and then whatever happens - you will know you did all that you could to inform yourself.
Unfortunately we are not blessed with hindsight, wish we were, so you can only go on possibilities and probabilities.
Ask your EP for an estimate of how effective they think an ablation would be for you?
Flecainide worked well for me without any noticeable side effects but it is a toxic drug and I would rather not take anything if I can help it - soooo....l nowadays I take nothing but I am waiting for Pace & Ablate.
Remember that all treatments are to relieve symptoms so it may also depend upon how you tolerate episodes and how symptomatic you are?
Many variables and only you can decide - it is a regular question and many people have been were you are now and all choose a different option - no right or wrong.
Best wishes - CD
Just to jump in here. Yes ablation creates scar tissue in the heart which is what is done to block off the rogue electrical signals. Lone AF merely means that it is not caused by valve problems or other cardiac issues. Over time and multiple procedures this can reduce the flexibility of the heart muscle resulting in some reduction of output/performance but after three myself I still feel better than with AF.
It MUST be understood than ANY and ALL treatment for AF is only ever about improving quality of life so there will always be compromises. Personally I went ablation which stopped my AF ten years ago but as I repeatedly say here, the only right choice is what is right for you. Decide and never look back and say what if.
Had GA for all my three. The risks are explained mainly so you can't sue the hospital in these litigious days. They seldom happen and the prospect of no AF was the goal so no contest. for me. I had a cardiac arrest having a simple procedure which nobody ever worries about a year or so back but survived as I was in hospital at the time. Its bad for their image if you don't survive and yes it was in the small print. When its your time you die. If not you don't .
Reminds me of a dreadful joke about the lady who had a near death experience and met God who told her to go back and enjoy life as it was years from her time. She cashed in her premium bonds and went and had face lift, boob job. the works and as she left hospital she was hit by a bus and ended up back in front of God. She berated him saying you told me it wasn't near my time. "Sorry " says God I didn't recognise you."
If all tests are clear and you have no other co-morbidities i.e. Lone AF plus your QOL is good, I would postpone the ablation and substitute real action on lifestyle and supplements prescribed by an experienced Alternative Practitioner.
PS I am on Flecainide (200mgs/day) it is a strong drug but I needed it 4 years ago to stop 2 AF episodes a week, it worked and no side effects to date but I look on it as just a way to buy time to sort out my physicality generally and then I will try weaning off it, hopefully next year.
Not an easy decision! I'm not taking up offers of either of them. 18 months ago my EP suggested daily flecainide and I said no, thank you and then he offered another ablation and I've opted for Plan C - carry on with fairly mild AF now and then and see how things go. I've seen him twice since then and was discharged at the last visit.
I do ask myself if this is my best option. My GP was supportive when it was discussed last year, but where is my heart going with this regime?
I took a lot of flecainide a while back and try not to use it at all now. AF nearly always self terminates.
I think all of us who have AF have to decide on this issue. My first visit to an EP at the start of my journey raised this - meds route or ablation. My EP was of the opinion that if you were going for ablation do it early as better success rates. As the idea of these powerful meds for life filled me with horror, I opted for ablation so never really took any meds (bisoprolol for a few months whilst on waiting list). I take apixaban. That was 2013 and after a rocky 5 months all went quiet. One day I realised a week had gone by with no episodes, then a month and now almost 5 years. I will do it again if necessary and be ever grateful that I was given the opportunity.
So good luck with the decision making as this is a difficult one 🍀