My September ablation (effectively a top-up to my successful 2002 ablation) was reasonably successful in terms of stopping atrial fast rhythms, but they can't get at my PVCs as I have a mechanical aortic valve. So I was discharged on 60 mg Diltiazem and 2 x 50 mg Flecainide. This didn't do much, but increasing to 100 mg x 2 Flecainide was really effective, both at having no fast rhythms but also reducing ectopics.
However, I've still had breakthrough fast rhythms and particularly nighttime PVCs, very sleep-disturbing. So last week we agreed to try me on 300 mg a day of Flecainide (3 x 100). This is the 4th day and so far very effective. ECG on Monday to check my QRS etc.
I am still getting threats of breakthrough but nothing that I haven't been able to slow-breath away. I'd be interested in anyone else's experiences of 300 mg /day Flec.
TIA
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Cliff_G
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I'm guessing (hoping!) no prior heart disease or heart attack?
My EP at Bordeaux for the last 7 years always tells me he doesn't want me on any more than 200mg Flecainide/day, but my EP at Royal Papworth (last 2 years as my go-to UK EP who I have 15 mins with 2 or 3 times per year - largely if I'm honest just to make myself feel better!) thinks it'd be fine to go to 300/day if I ever need/want to. She said if I'm concerned about MI risk as I get a bit older (say sometime 65-70 - currently coming up 64) to get a CT Calcium score done to check for any coronary arterial narrowing/calcium deposits. But this is something I plan to do in the next couple of years anyway just as a precaution and to tell me DEFINITIVELY if I need to be on a statin or not.
I've heard of some folks been on as much as 400/day for more serious ventricular arrhythmias with no issues. But as ever, we're all unique experiments of one and there's no size fits all. I've taken 150-200/day since 2008 with zero issues (maybe I coulda/shoulda given it up after second ablation in Jan 23 but as yet I haven't dared take the risk.....). As such, I don't think I'd have a problem with 300/day if needed. I've seen folks on here who've taken 200/day for 30-40 years with no issues whatsoever. If you've had no side effects/issues with 200/day for a number of years (which it looks like you have) then it'smore likely than not that you'd be fine with 300/day too. But that said, once 200 becomes ineffective then maybe upping it to 300 could similarly lose its effectiveness a year or three down the road. But as we get older, a year or three down the road sounds more and more meaningful !
But that obviously the above comments firmly on the basis that I'm not an EP !
Interesting about Bordeaux, that's where I had my 2002 ablation + top-up, when I had just turned continuous, age 48. They did a good job, original lesions still good at my ablation last Sept.
My new EP put me on Flec after the recent ablation, knowing my history of an apparent MI which was actually coronary artery blockage by my dissection, though I did have a stent and CABG during the surgery, 30% occlusion. He said that they are much more relaxed about the CAST trial these days, which according to my reading did not stratify patients according to risk, and has since been re-assessed and criticised. Some patients are benefited by Flec even after MI, others are at risk. They had a good look on echo before my ablation and said the pumping function is still very good, so presumably part of the decision.
My QRS is 135 msec on 200 mg Flec, but 122 post-ablation on zero a/as, so +11%. Over the 120 msec figure but well below the max +20-25% criterion.
Anyway, ECG yesterday for QRS widening, PR, QT etc., now awaiting results. Hope they allow it, as it seems to be doing the trick, PVCs down from 6000 mostly at night to 800 per day. TBH, I'm happy with the risk, versus the certainty that the rest of my life will be with a diabolical QoL. My fib has always been very symptomatic.
I am 71 and have been on 200mgs Flecainide for 12 yrs and last year AF has broken through (7% of the time) but my cardiologist hasn't offered 300mgs but instead says it is last chance saloon for an ablation before permanent AF sets in and ablation success rates sink from 85% to 30 % or less.
However the same cardiologist recommended an ablation when I was on 100mgs Flec in 2013 and it was me who asked for 200mgs instead and very glad I did.
What I think I am saying is that it's probably worth persevering with 300mgs whilst considering other options but I would always take a second medic's opinion first.
I started in 50mg x 2 a day, and over a period of 2 years rose to 150mg x 2 a day. That dose reduced episodes to 0 to 2, very short, 10minute maximum episodes a year, always when I was going to bed later than normal. I had no side effects, After ten years of 300mg a day, I was found to have persistent though asymptomatic AF, which I feel to be permanent as 7-8 years later I am still in asymptomatic permanent AF, for which I now only take an anticoagulant, Warfarin being my choice. During the 21 years during which I've been treated for AF, it was found that I could not tolerate beta blockers, causing both urticaria, plus exacerbation of asthma. When I was seen to have persistent AF I was offered Diltiazem, but as my heart rate was in the normal range, I could not see the need for it.
Thanks. Yes, my EP, having mapped my heart in 2024 and found the original 2002 lesions still intact but very extensive (I was in continuous AF when done, so actually a remarkable result), said he was surprised I wasn't in permanent AF, and is candid that he thinks it could return with ongoing fibrosis.
Let's hope I can stay on 300. I had a little taste of permanent AF after my dissection surgery, and had an answer to my question of "how on earth do people put up with this or or even not notice it?". The answer being that as time goes on your body seems to adapt and the symptoms reduce. In fact I was sleeping better back then in gentle AF than recently with sinus + nighttime PVCs!
At some point (I'm 70) I may need to stop the fight to stay in rhythm and go to rate control, which for me has not been difficult.
I've been on daily flecainide since November 2023. 50mg 2x/day did nothing for persistent AF for six months. 100mg 2x/day put me into sinus rhythm after about a month, but didn't maintain it; I kept bouncing in and out.
Since ablation, six months ago today, I am in NSR more often but still have episodes of AF lasting up to a week. As of today I've been in NSR for a week (with some overnight episodes that resolved themselves; I assume they were AF, but I don't start fiddling with the Kardia at 3am), which is encouraging. I am back on the list for another ablation, which will probably mean a wait of up to nine months. I'll see if things improve further in the meantime.
On advice from cardiology I have taken 100mg + 100mg two hours later to try to stop AF, then a final 100mg at the end of the day. It still takes three to five days to work.
Again under advice, the only time I took 150mg in a single dose (then cut back to normal 100mg dose), I felt very odd -- borderline 'should I go to A&E?' (I avoid A&E because they are overrun and all they do is observe me. I can observe myself more comfortably at home.) And it still took four days to cardiovert me. I don't think I will do that again.
I struggle with a lot of side effects (lethargy, brain fog, weight gain) but I think they are mostly from metoprolol. Oh, I now have mild peripheral neuropathy which I didn't have before. I think that's the flecainide. I can't be bothered to look it up.
Thanks. Yes, I have asked if I can't stay on 300 if my EP would suggest a 200 mg regime that might help, such as PIP or whatever. Maybe 250? 100 a.m., 150 evening against the nighttime ectos.
Reading back, I see I didn't answer your question. Sorry. Brain not as sharp as it should be.
I'm wondering if 100mg 3x/day is my way forward when I'm in AF (just had 36hrs of fast AF for the six-month anniversary of my first ablation), rather than 150mg x 2, which laid me out flat.
Good luck with yours. I hope my next ablation is successful as your first one.
300 Flec plus Diltiazem 60 mg was slowing conduction too much, widening the PR and QRS. So I have to stop the Diltiazem and cut the Flec to 250, 100 a.m. and 150 p.m., as my worst ectopics are at night.
I have to say, though, whilst 300 (3x100) was stopping the fast rhythms and cutting the PVC numbers (and their height on my Wellue) impressively, it felt a very unnatural rhythm, and I've already lost that feeling. Fingers crossed as this morning is the first Diltiazem I've stopped. Maybe my foot swelling will benefit.
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