So appealing to any long term Flecainide users and those that have weaned off or tried to reduce it.
Can you please 🙏 give me your experience, so that I can prepare somer questions for my appointment.
I am into my 10th year of 200mgs Flec only and in my 70th year on the planet Although I have been virtually AF free with Flecainide, I am never complacent and feel the day of reckoning is coming be it AF, heart remodelling, kidney function, neuro issue or something else.
Should I push the cardiologist hard to come off the Flecainide, he will no doubt say don't rock the boat 🤔??
Any comments much appreciated.
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One year on flecainide. Started at 50mg bid (twice a day). Increased to 100mg bid after several break through afib events. Ep did not like my ekg at 100mg bid so reduced back to 50bid. Later I was further able to reduce to 25bid and was afib and aflutter free for 8 months. Finally, I tried 25mg once a day, with my goal to get off flecainide completely. After a month on 25mg, once a day, I had a couple of short events that looked like afib but could have been aflutter. My plan now is to have an ablation.
My history shows that at least in my case, a lower dose of flecainide than usually prescribed can be effective, however at some point it stops being protective.
You seem to be tolerating flecainide well, and I assume you have had periodic 12 lead ekg's and echo's to make sure your heart is both structurally sound as well as that flecainide is not effecting your rhythm in a negative way such as a too wide QRS, etc.
Certainly worth a try at lower dose, or even off flecainide completely, but going off completely is a roll of the device, because afib tends not to disappear without intervention or if it does, it doesn't disappear for long.
Flec was effective for me at low/moderate doses 25-50 bid, however I have to take it with diltiazem, a calcium channel blocker, for nodal protection. I don't like the side effects and the idea that I will be on them for life and with no guarantee they will keep working. I'm in my 70's so the thought is that if I'm going to ablate, better to do it now then when I'm really old lol. That said, newer techniques like pulse field ablation PFA are coming around which present some argument to wait a little if it make sense. For me, it didn't.
Thanks Jim that's a very helpful history. I have had regular 12 lead ECG but not the echo, so will discuss the latter with my cardio. All the best with the ablation.
What side effects do you have? I have been taking for a month 50mg Flec and 50mg diltiazem twice daily and I don't seem to have any side effects other than the one day entertaining about 30 people for Australia Day, on my feet all day and had swollen feet at the end of the day.
Did you have swollen feet before diltiazem? Edema is one side effect, I get it also on diltiazem. Side effects aren't terrible esp at my baby doses (25-50mg once or twice a day) but do feel a little more energetic off the meds, it depresses my heart rate some and I think the meds contribute a bit to my GERD which has been a problem for some time. The main concern is down the road where I may need more, or it may stop working entirely. When I was at 100mg twice a day, I didn't feel well at all and my ekg showed a widening QRS so my ep said reduce the dose. Hopefully, the ablation approach will take care of all this, but I'm realistic that it may not.
I have only just started on daily Flec this last month and was wondering what AF does while it is controlled by Flec. See my latest post at healthunlocked.com/afassoci...
I've been on daily flecainide 2x50mgs for over 15yrs since my first and only AF episode. I recently saw a cardiologist to review the dosage and he advised not coming off as it was earning well for me. I don't take any other medication apart from a low dose statin and now 72yrs so like Pottypete, I'm of the opinion not to rock the boat.
I was prescribed 50mg twice daily in jan’22 after first episode of AF. It was stopped after few months as it caused runs of ectopics. I’ve only had one other episode, dec ‘22 and successfully used it as PIP. Edoxaban 60mg daily but no other meds other than analgesia for OA. Only short term use of flec but no ill effects just stopping it. Take care 🦊
I was prescribed 100mg flecainide daily and didn't suffer from side effects at all, but I spoke to my very helpful GP who agreed that I could try it as a PiP as my episodes were only three or four a year. and I wanted to reduce the amount of drugs I was taking. I did this some years ago and it has worked admirably since then. In fact my last episodes were almost a year apart. When I do have an episode I take 200mg immediately and it works within half-an-hour.
Perhaps you could try a modest reduction down to 150mg and see how you feel? If you are getting no side effects from what you are taking I can see that it is a difficult decision.
Thanks, my main concern I suppose over reducing just down to 150mg is not an episode per se (assuming it was under 24hrs) but that as a result of 'breaking out of Flecainide' I get a rapid HR episode, which I have not really had before just the odd blip up to 150 but mainly around 80/90. Normal HR being 60. Best wishes.
I'll share my experience. I was on Flecainide 50mg X 2 between April 2020 and June 2021. I preferred it to Bisoprolol but that dose didn't stop AF completely- my pattern was once every 2 months. I chose not to take a regular higher does but to use extra PiP as needed. I'm also on Diltiazem, which assists with BP as well as helping prevent the Flecainide from potential to trigger atrial.flutter. From June 2021 onwards I managed just as well on 75mg a day following my first ablation. 8 months after 2nd ablation I reduced to 25mg a day and am now off the Flecainide altogether. Slight increase in average HR but otherwise no ill effects. No breathlessness and only occasional palpitations, which I was getting anyway if stressed. You can only find out by trying. Nothing to stop you going back on if you hit problems.
I’m 76, was on Flecainide for four days, after an cardioversion to deal with atrial flutter, and had to stop Flecainide because it caused tightness in chest and wheezing like beginning of asthma.
Those symptoms disappeared after I stopped it.
I went back into atrial fibrillation and then had an ablation for that. Then went into atrial flutter and that was remedied with sotalol but had chest pains & trip to emergency department with sotalol.
Next, I went into atrial flutter again and had an ablation for that. Am currently only taking anti coagulant (Eliquis) and metoprolol tartrate, each twice daily (every 12 hours).
Anti-arrhythmics don’t seem to agree with me… but everyone is different.
Hi there I've just read your post so sorry for the late reply...I am too about to see electrophysioligist this Sunday with some similar questions as yours...my main one is the heart remodelling that we are often told by the experts happens ...what I don't understand is if the patient is keeping nsr very well with next to no af breakthroughs for a long period of time like yourself then why is the heart still remodelling itself.. as I understand afib begets afib as does nsr begets nsr...weather its abalation or meds that's stops the af surely the end result involving remodelling should be the same...yet I keep hereing abalation will stop the remodelling but nothing about the meds stopping it...what are your thoughts on that one ?
Sorry for late reply yes that was my take on it as well..although I read an abalation stops the af traveling through the scar tissue so stops the remodelling that way...and meds only suppresses the af so it is still remodelling you just don't feel the symptoms...but I'm not sure I agree with that..if the meds stop the af then how can it remodel ,, its all confusing isn't it...
Flecainide is used to prevent or treat irregular heartbeats (arrhythmias) such as paroxysmal supraventricular tachycardia (PSVT) and paroxysmal atrial fibrillation/flutter (PAF). Flecainide is also used to prevent life-threatening sustained ventricular tachycardia (sustained VT).
Flecainide belongs to the group of medicines known as antiarrhythmics. It works directly on the heart tissue and will slow the nerve impulses in the heart. This helps keep the heart rhythm normal.
There is a chance that flecainide may cause new or make worse existing heart rhythm problems when it is used. Since it has been shown to cause severe problems in some patients, it is only used to treat serious heart rhythm problems. Discuss this possible effect with your doctor.
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3 month check up after Cryoablation
Three month check up following Cryoablation 
Premature atrial contractions - flecainide?
first *hopefully only* ablation this week!
Not in AF but so Breathless
