I was on Flecainide for 2 years, only 50 mg morning and night.
It is now 7 days since my last tablet post-ablation, and I have really noticed that my energy level has increased. My EP told me that the flec would be in my system for at least 5 days after cessation.
Has anyone else noticed this coming off Flecainide?
It would not be difficult to put the fatigue down to ageing.
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OzRob
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Yes, my energy levels rose too when I stopped taking Flecainide. Looking at my ECG a new cardiologist said it was doing more harm than good. I used to have to mow my back lawn in 4-5 sections and rest between each one. Now I can do it all in one session.
I have trouble with side effects from many meds, Flecanide included. I only took it for awhile because of fatigue and increased heart rate. Felt so much better without it.
What is interesting is I didn't notice it when introduced to Flecianide. The fatigue was gradual. If you had asked me a month ago if the medications had any side effects, I would have said no.
Glad I had an ablation to discover this; another valid reason I will add for having my ablation.
I've recently come off BB Bisoprolol and feel FREE. What does that mean not having to sleep after a day out of part there of. Some ease on the hill to my place etc.
Now totally on Diltiazem for rapid H.R and slightly high BP.
Here's to cutting down on the meds when signs that I was taking too much and a BB was no longer needed.
Well the control of H/R and BP might be there but although controlled I am in AF persistent.
Not sure at night when over 3 x 24hr Heart Monitors reporting a Night H/R of 47avg
bpm , if I revert to sinus mode. It was 186bpm with Metoprolol and pauses at night. 156bpm with Bisoprolol up to 10mgs no control! and no breathlessness or pauses.
I have only the CCB Dilazem to rely on. Although CD it doesn't cover 24 hours and it doesn't need to with a H/R night of 47bpm.
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the medical profession said the tiredness was caused by the AF not the medication but once I stop taking FELECANID stopped still but so glad I’m off the
I was kept on Flecanide for the blanking period post ablation so it was three months before I came off it. Definitely it had caused fatigue as only then did the energy start to return. Also my three monthly blood checks shows a significant improvement in kidney and liver functions and my cardio fitness has shot up from 21.4 to 35.9 which is at the top end of above average for my age bracket which coincided with coming off Flec rather than the ablation. So in my mind coming off Flec was a big win for feeling on top of things.
For it’s a matter of living with it and it not impacting my quality of life. I found taking the medication was I took it if I moving I’d fall asleep 24 hours a day. be fighting off. Sleep horrible way to live
I found when I was on higher dose of both Metopropol and Flecanide I was lethargic. I stopped Flec and felt better so the combo of both is what really hits us. I’m now on very low dose of approx 20mg twice a day Flec and approx 10.5mg metoprolol and find I have a lot of energy during the day though at night sometimes I can doze off at 8pm in from of the telly. I’m hoping to remain in sinus until the newer methods of MRI guided catheters are adopted which should offer better accuracy. Could be a couple of years away!
That's amazing!! Thanks for sharing. I am encouraged by this as I may be put on flec sometime in the future. For now diltiazem is working to lower my too fast sinus and sinus tach the doc said.
Lucky you. It made me a zombie -- I literally could not get out of bed. I had been given it as a preventative by a hospital doctor, not my regular cardiologist, after an A&E episode, but after six weeks of lethargy I stopped taking it. When I saw my cardiologist he agreed that it did not suit me. Metoprolol also slows me down but not as badly as bisoprolol.
Well you are lucky. On 5mg I felt like a zombie , no energy , no motivation , worse asthma and a headache that appeared like clockwork two hours after taking it.
Because I was taking too much of it, sometimes up to 400 mg/day. Approved by my cardiologist at the time. So I took matters in my own hands and stopped taking it altogether. Now only as PIP.
Been meaning to post a similar observation. I have been a regular distance runner throughout my AF journey and have experienced the impact of medication on my ability to run. Initially I was on both Flecainide and Bisoprolol (Beta blocker). The BB significantly suppressed my HR (maxed out at 110 cf 160 previously) making running very difficult and so with the agreement of my consultant, we dropped the BB. I then had several years of running on a daily dose of 2 x 50mg (BID) Flec. Running was a trigger for AF, if my HR went over 140 - boom - rate shot up to 215 and I would be joined by an old friend AF.
I was on just Flec for 2 years and had read research that concluded that although it had no effect on resting heart rate, it had an increasing effect as HR rose, suppressing HR by average of 12% at max HR. I run with a HR monitor and could see the impact on HR from the trace. For 2 years I found running harder than I remembered, especially on the longer runs and despite running 3 to 4 times per week, I was getting gradually slower and finding it harder work and less enjoyable. I had a 1/2 marathon in May ‘23 of which I can only describe the experience of the 2nd half as miserable. May ‘24 I had a PV ablation and 12 weeks later came off Flec. The transformation in how I felt running came not after the ablation but after coming off the Flec. Maybe because it built up over time, I hadn’t realised the big impact Flec was having on my ability to exercise. Not as bad as the BB, but still significant. Whilst on Flec, my legs would feel heavy and tired from the off - they “felt like lead”. My ablation has not been totally successful and I have needed to change my routine. I will get AF about once a week now, but it’s not generally triggered by my HR. It seems far more spontaneous and random, though a recent Christmas party set it off and also during a hard tennis match. I now take Flec solely as a PIP, waiting 2 hrs to see if resolves on its own (never), then 150mg with a further 150mg 2 hrs later if required (usually the case). So far it has worked each time. Interestingly, though the concentration in my blood 12hrs later is theoretically higher than when I was taking 50mg BID, yet I can go out running and NOT experience lead legs, and it does NOT suppressing my max HR, suggesting the harmful impact is from the long term use rather than short term high level short sharp shock. (300mg is max recommended dose in any 24 hrs. Half life I believe is generally around 12 hrs).
I now better realise what impact Flecainide had on my body and I now consider it / refer to it as my prescribed poison, be it with a benefit when careful used.
Would be interested to read anyone else’s experience of exercise on Flecainide
As stated above... Ive been on Flec for 5 years now, and when first started taking it seemed to cause a bit of fatigue, but now do not really notice. I go to the gym 4-5 times per week, work out with weights pretty hard, and again, do not notice any fatigue other than what I might normally expect. Perhaps doing anaerobic exercise is different and harder to notice any effects from the Flec as compared to aerobic?
I didn't take flecainide fir long as it caused pro arrythmias but I would like to know if your EP recommended you to come off it post ablation (I am assuming he did). I had my ablation in March this year and remain on Sotalol. My EP has allowed me to reduce by 40mg but says he likes belt and braces and would like me on a low dose continuously. He also told me I would be on apixaban for life
Rob, did you just stop the Flec, as I have been told to do the other week, but read conflicting stories on here as whether or not to taper it off? Worried the AF will appear as i have lots of stress at the moment but am going to stop it after Christmas as I dont want to end up in A&E over this period.
When I was put on it 100mg twice daily I felt really ill for a month - cant really describe what it felt like. Much better when reduced to 50mg twice daily. I have fatigue but still on Bisoprolol so could be that
In my experience, Bisoprolol had a v severe effect on exercise (though on at same time as Flec) whereas Flecainide had a marked effect. I just stopped the Flecainide. I was on a low dose (50mg BID) and half life is only 12 hrs so little point taking once daily and I believe 50mg smallest tab size though could possibly split though no line on my brand.
As I acquired chronic fatigue around the same time as the paroxysmal AF, I can’t put the fatigue down to the Flecainide alone but I have reached 80 ( 81 next month) and fortunately, my husband does the stuff I can no longer manage and my brain still works - losing that would be far worse!
I noticed that too, an increase in energy when I quit Flecainide. I also hadn't realized that it caused slight hair thinning, as my hair grew back fuller after I quit.
I’ve been on 50mg twice a day for 5 years now, I remember first going on it and I thought I had a little less energy, but now I think I’m fine, but maybe I’ve just adjusted? So I’m interested in your question and the answers!
I felt fine also; it was not until I stopped that I really noticed the increase in energy. It is a bit like looking in the mirror each day as you age; you don't notice the daily difference and just accept ageing. We just accept lower energy as it is gradual when starting Flec.
My experience pretty much echoes others in this thread. I experienced my first episode of lone paroxysmal atrial fibrillation (LPAF) about four years ago. It was while doing a one-hour steady state piece on a rowing machine - my heartrate shot from 140 to 240 bpm. I am a life-long sculler and habitually wear a Polar chest-band heartrate monitor which connects to my iPhone and rowing machine. I was subsequently sent to a cardiologist, diagnosed with LPAF, and prescribed flecainide, bisoprolol and apixaban. The meds made the afib go away, but also made me lethargic and very depressed. Eventually, under supervision of my cardiologist, the biso was dropped. I regained joy, was able to train moderately hard on a regular basis, and was free of afib. Right from the beginning, one noticeable side effect of taking flec (100 mg twice daily) was that my age-adjusted heartrate dropped about 12%. No matter how hard I pushed, it would not go above 130 bpm. I also notice that I have to consciously take deep breaths going up stairs (curiously don't feel this on my rowing machine or in my single scull on the water). And my legs also tend to feel a bit leaden throughout the day. I have come to terms with this. Fast forwardi to six weeks ago, when I underwent a pulsed field ablation. So far as I can tell, the procedure has been a huge success. I am feeling well, and for the past month have been slowly ramping up the length of workouts on my rowing machine. Of course, my max heart rate still maxes at 130 bpm. But I am feeling great and looking forward to coming off flecainide in another six weeks, after the customary three-month blanking period after the ablation. With luck, my max heartrate will readjust to my age-adjusted norm of about 150 bpm. And perhaps I will able to make my boat go a little bit faster in the spring!
Will be very interested to hear how you feel once you’re off the Flecainide. Please post an update.
Interesting that on top of all the symptoms you mentioned that were in line with my post above, you also mentioned your breathing. I too, whilst taking Flecainide experienced this but I am still experiencing it now, 3minths + after stopping the Flecainide. My thought was it had more to do with the underlying condition or possibly meds I’m taking for hypertension.
Hi Rob, I didn't especially notice that as I titrated down from my Flecainide. Overall though - now 18 months off it except for occasional PiP I do feel well. I'd think the change in your energy levels is more to do with have had - presumably- a successful ablation.
I had not had an AF episode or any ectopics for the two years when on Flec. I am not sure AF has other affects on the heart or general well-being when being medicated. It is an interesting question that others may have a view on.
For me, there was a definite change when I came off the Flecainide as opposed to the results of the ablation. I had the ablation in May ‘24, and only when I came off the Flec 13 weeks later did I feel an almost immediate improvement, no “lead legs”, increase in both max HR and in exercise HR and most importantly, I started to enjoy running again and felt that improvement was once again possible. I hadn’t appreciated the impact when I originally started taking it, though I suspect I was much fitter, having then lost the fitness due to the restriction on exercising that being on Flec had caused.
I often wonder what would happen if I tapered off all my drugs. I used to feel energetic and I’m always told it’s my condition and not the drugs that leave me fatigued, breathless and not quite depressed but sluggish mentally, and quiet. I wouldn’t do it but I do enjoy thinking about it - especially after reading threads like this.
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