Flecainide, not curing PAF

[Exfat]

I had PAF for five years flick and I stopped it every time. No it doesn’t after being in AF for three weeks they changed the dosage. I’m taking a low dose of flecainide every day and Apixaban. I’m hoping it will bring the sinus rhythm back but what happens if it doesn’t is an ablation something to think about or do they not work as well as advertised or am I being pessimistic and thinking, but I will automatically fall into the 20% who it doesn’t work on

[BobD Volunteer]

It is important to undersatand that AF is almost always a progressive condition. Flecainide does not stop working in the way that some drugs like narctoics do. There are no receptors in our bodies for it so not a matter of needing more and more. The internals of the heart develop or "re-model" the longer you have AF which is why early intervention by ablation is desireable.

OK ablation is not a magic bullet and must be considered part of ongoing treatment. At the same time one must also accept that any and all treatment for AF is about symptom control or to put it another way quality of life (QOL) .

Provided that rate is well controlled and the patient anticoagulated for stroke prevention there is little difference in end results and for many long term sufferers rate control and anticoagaulation are the fall back.

That said I had three ablations for AF up till 2008 and AF free since though had a fourth ablation for atrial tachycardia in 2019. Seems some of us are prone to arrhythmias.

[Exfat in reply to BobD]

it’s more the lack of control I have over the condition that’s freaking me out than the choices of treatment. I’m quite new to this I thought it would be stable but it looks like it’s now got a mind of its own.

[jeanjeannie50]

Welcome to the forum.

If you're taking a low dose of flecainide, perhaps that will be increased before you are offered an ablation. A lot of members here take 100mg every morning and night. I think that's quite a standard amount.

There are other drugs you can try too Diltiazem being one of them.

Jean

[Exfat in reply to jeanjeannie50]

thanks for the reply. There seems to be a lot more choices than I first thought, although I’d rather it sort it self out without having to go through the range of treatments

[BobD Volunteer in reply to Exfat]

Wouldn't we all but best face up to the fact that AF is a long journey. You will get used to all this eventually and learn to live a normal life.

[Buffafly]

You would probably be offered a cardioversion to bring your heart back to sinus. If that doesn’t work you might be given a drug first for a while to help the cardioversion work. And if that works it shows an ablation is likely to be successful and you may be offered one. Best wishes

[Exfat in reply to Buffafly]

At the moment, I’m on a daily dose of flecainide and Apixaban. It seems to have brought me back into sinus rhythm. It’s just not knowing if it’s going to stay this way from various comments it probably won’t. It’s the lack of control over the condition it’s freaking me out

[Buffafly in reply to Exfat]

Yes, that’s what freaks most people out 😩 It’s one of the hardest things to cope with but it has to be achieved as much as possible because at the moment there is no ‘cure’ for AF, only treatments with varying degrees of success. Even ‘Pace and Ablate’ where the link between the atria and ventricles is destroyed still leaves you with half your heart in AF and has a few downsides as well. You might find it helpful to have some type of treatment for your anxiety - a further post will be sure to draw some suggestions as to the most effective one ❤️‍🩹

[Lenlec]

I would definitely look into the ablation route. Good luck in your af journey

[secondtry]

I was started on Flecainide 50mgs (usual entry level) x2 daily. Still got 2 episodes a week, varying lengths. Dose stepped up to 100mgs (a medium dose) x2 daily, episodes stopped. I don't take any other drugs but do take Mg & CoQ10 supplements. My cardiologist did not favour high PIP doses, daily moderate dose instead.

[Swimsyroke]

Flecanaide stopped working for me 2 years ago. I was eventually prescribed Edoxaban and 5mg bisopropol by a cardiac nurse and have only recently seen a consultant. I am now in permanent afib have tweaked the bisopropol to 1.25 which doesn't do my head in and generally feel great. No more worries about what I eat, if I sneeze, have a cold etc. I am no longer fixated on my heart but just LIVE. Okay my heart rate increases when I exercise (I play golf, swim, do yoga, occasional cycling) but I monitor it with my Kardia to make sure it comes back down to an acceptable level. Normally I am not aware of what my heart is doing as i just get on with living.

[Sixtyslidogirl]

I have PAF starting in 2020, with episodes increasing in frequency. So 4 this year which isn’t much by some people’s standards. I am not on any long term medication apart from PIP (flecanide, bisoprolol and apixaban) However, my cardiologist is suggesting an ablation and I think I’m going to go for it. As Bob says, AF is usually progressive and I seem to have progressed so ablation seems attractive.

[Karendeena in reply to Sixtyslidogirl]

I am in the same situation and diagnosed about the same time as you. My episodes were every 4 months but now coming about every 2 months. I am very symptomatic with heart rates about 100bom and they last for up to 48 hours. I am waiting on an ablation and have been on the list for 12 months. Was scheduled for this Friday but now I have a virus and a nasty cough so that's not going to happen. Looks like it will be Spring next year now.Went into afib early hours of Sunday morning and still in it so my episodes are changing and the condition progressing as my consultant said it would 😞

[Exfat in reply to Karendeena]

from everyone’s responses. It seems that there is no rhyme or reason to AF, even though I don’t like what I’m going through. It’s reassuring to know that I’m not alone. I hope things go well for you and everyone else I’m actually having more issues with using this forum that the AI for the moment I’m not a technophobe but it’s been a look at just as big a learning process to use this has to deal with the AF

[Sixtyslidogirl]

Sorry to hear such a long wait. I am wondering how long I will have to wait. I may know more after Wednesday.