Anybody out there on or been on 200mg of Flecainide/day for Lone PAF? How long before serious side effects?

Flecainide has worked well for 2 months but is it accumulating or changing an otherwise healthy heart and body generally.

[Rellim296]

I went for two years without any side effects that I noticed on 100mg x 2 of flecainide per day. It worked like magic for the first year. The only time I had AF was four days after dropping to 50mg x 2 and I went back up to 100mg. Then I had four or five occurrences of AF in the second year. After that my toes started feeling numb and an impaired sense of taste set in about the same time. AF increased slightly. Medication was increased to 150mg x 2 and the numbness spread to heels and then ankles and up the shins. I really only notice it at night. It's hard to say how bad the sense of taste is. I can taste things, but cinnamon and fresh coriander seem fairly tasteless and everything seems bland. It's not all bad - it makes drinking hot water seem almost as good as having a proper cup of tea. But generally I feel well. Skin tends to be dry, especially between fingers, round the ankle bones and at the back of the knees.

[hedley in reply to Rellim296]

I took Flecainide for nearly 10 years, uped in stages as AF returned to 300 mg no side effects, now on Disopiramide constantly have wind, dry mouth and throat. Had all medications Flecainide was the best.

[Hidden]

Thanks!!!

[dedeottie]

I started on 100 mg x2 and all was fine. Had to increase to 250mg a day and still all was fine. Then had to go to 300 a day and A.F. controlled but started to have weird visual disturbance. E.P. reduced back 200 a day going down in lots of 50. When I got back to 250 most visual problems gone but not all so will have to go back to 200 a day. Shame as in all other ways it suits me fine. X

[dedeottie in reply to dedeottie]

Oh by the way this has all happened in 6 months.

[Hidden]

Thanks so much, good luck!

[Hidden]

Flecainide gave me palpitations immediately, so it's not for me.

[Hidden in reply to Hidden]

Koll, I was given flec. 2-3 years ago and took myself off it as it was actually causing more arrhythmias . Since then it was tried IV immediately before DCCV by cadio. but did nothing . Interesting that we are now on same drug. Sandra

[wat54]

I have been taking 2x100mg of flecainide daily for seven months. It stopped the AF attacks immediately and so far I haven't noticed any side effects at all. Good luck!

[Loo53]

I ended up taking 300mgs a day and I had visual disturbances then my EP said that dose is far too high, who put you on that dose and who put you on Flecanide in the first place? He also said that Flecanide is having a bad effect on my heart as he showed me my ECG I had in the clinic my rhythm was all over the place but he said continue to take 200mgs a day now I confess to hating this stuff and hating any drug in my body I can feel it giving me the shakes and thats either my nervous system or my thyroid and so I'm back to taking it as and when I need it which is usually at night. But I am in no way suggesting anyone else do this please do what you've been advised.

[Hidden in reply to Loo53]

Flecainide is worsening your heart rhythm and the doc keeps you on it !!! Mine took me off and on to something else in an instant. Must have his/her reasons I suppose.

[Hidden in reply to Loo53]

Totally agree with your feelings about drugs, I need to find out more about using it irregularly 'like an aspirin for a headache' - sounds logical, if the onsets don't increase in frequency because its not kept down.

[Loo53]

Yes Koll I guess he must have his reasons but being the person I am I have chosen to try and take a little of it as I can unless I really need to take more. It is the best anti arrhythmic drug around. What were you put on Koll I'm curious?

[Hidden in reply to Loo53]

Hi Loo, Two drugs I know of work on me, Propafenone and Disopyramide. I'm on the latter at the moment. Flecainide works for many people I understand but we're all different. When I reacted to Flecainide (which has happened twice so it's not a one-off), my EP's secretary was surprised because I assume they prescribe it successfully all the time.

[Loo53]

Well I'm sure I will find out if I need it more regularly or not...ok I appreciate it seems like I'm being daft but I need to find out just how bad my AF actually is because all I did was take the stuff out of fear of being thrown back into AF but my heart appears much calmer without it...although that might change...and I was only discharged on pill in the pocket anyway...will keep the thread posted if I end up having to take more...

[Bagrat]

I have been on flecainide 100mg twice a day for three years. I asked for a check ecg last week whichI was told was fine

I have to believe my GP would know. Apart from feeling tired and occasional episodes of overwhelming fatigue, I seem to tolerate it well. My Gp's comment whenI was put on it "Well it's a dirty drug but it suits you that's ok".

[Hidden in reply to Bagrat]

Lone PAF first started 2008 (but 2009-13 nothing noticed but disturbed nights). Now on just Flec 100mg twice a day, all OK for 2 months, whereas 50mg twice a day caused 9 episodes in a month. My EP said yesterday definitely ablation asap, Flec in my case is just a 'duvet' covering which will slip off. Difficult decision but I think he's right.

As expected he had no time for internet research or trying Mg, CoQ10 or L-Taurine ('That's in Red Bull) supplements.

[iris1205]

You might to do a search by the word Flecainide and you will find multiple responses. Also, if you like any individual's responses in particular click on there Name and it will take you to all of there posts!

I have used and am grateful for Flecainide as it helped during my intense episodes of rapid AF, but I feel in the long term it has increased the reoccurance of AF - this is a personal perception to my situation and cannot be proved!

I do keep myself on the lowest dose possible. Why take more than we would need!?

[Loo53]

I do feel that this drug makes my palpitations worse and does nothing over night to stop me from waking up with my heart racing.And falling asleep and waking up with my heart racing it seems the act of dropping off triggers a fast heart rate and the Flec has done nothing for this either..

[Starboard13]

I have been on Flec for almost 7 years now with no major side effects. My breakthroughs went from an almost daily occurence to one every couple of months. I would rather not be on the stuff but it has been a game changer up to now and my PAF does not really impact on my life. The Beta blockers I have to take at the same time though are another matter. Taking a medication that helps reduce high blood pressure when you already have low/normal blood pressure and a pre medication resting pulse of 55-60 isnt fun and its turned me from a distance runner into a slug.

[looby1660]

Hi there, I have been on Flecainide successfully for the last 18 years! no side effects. When first diagnosed I was quite young and my doctors tried other things first which didn't suit me like Beta Blockers and Amioderone both which gave me horrendous side effects (the Amioderone issue with Iodine in the body occurred 2 years after I had finished taking it!!). I didn't feel healthy whilst taking the Amioderone and met somebody else who was being successfully treated on Flecainide, so at my next Hospital appointment asked to be taken off it and put on Flecainide. I have never looked back. The only side effects I have now are from the ulcer I have from the aspirin I have been taking to keep my blood thin!! unnecessarily it seems! (I wasn't prescribed enteric coated for many years by which time it was too late), so I have been taking another pill to control the ulcer. My advice would be not to worry about the possible side effects unless they start to emerge, then if you can't cope with them, talk to your doctor about another treatment like I did. Best of luck!

[looby1660 in reply to looby1660]

Hi there, I've just got a slight revision and rather than edit what I've put, I thought I'd add it because it may not be to do with the meds at all. However, I was just scrolling up the page now after posting and caught another response and lady mentions overwhelming fatigue, I did get that at times. about every 6 months or so for a few days and then it would pass, like I'd recharged my batteries. I haven't had it now for about 6 years at least. The reason I didn't mention it, is because when I told my consultant about it and I saw a few different ones as you do, and they all said 'oh no that's not a side effect of the meds or AF'. So presuming they know what they're talking about, I left it and just thought, well, I'll just cope with it then!

[Hidden]

I have been on Flecainade 6 months, and some days feel dreadful, but other days ok. I see Cons in 2 weeks so I will see what he says. I do not get any symptoms any more but side effects from all the dope I am on.

[Hidden]

I have been on flec for 6 months now, and at 2 x 100mg daily seem to be dogged by side-effects. Seeing Con next week to hopefully help. Take magnesium daily and now starting a nulti-mineral tab.