Positive report on a medium dose of Flecainide over 8 years

[secondtry]

It appears many are concerned about starting on Flecainide or staying on it even for the short term. So was I and still am!

I accept everyone is different and of course I don't know what will happen tomorrow (so I am certainly not gloating) but I thought it worthwhile a positive post anyway, in case it helps those who have a concern.

I have been on the same medium dose (200mgs) of this and no other drug for 8 years during which I have had 2 AF episodes under 1hr. I am not aware of any side effects. I have just had a private hi-tech urine test, comprehensive annual GP surgery blood tests (as 68yo) and an ECG, all are fine. I feel fine with normal energy levels.

PS I should add over the same period of time I have implemented many lifestyle changes including supplements, which requires patience & persistence!!

Enjoy today.

[BobD Volunteer]

I do love positive posts. The sad thing about many forums is that most posts will be negative as positive results are un news worthy. Considering that 200mg per day is 66.66% (2/3rd) of the max daily dose that should be re-assuring to many.

[Hylda2]

I’m with you. 200 a day plus 1.25 Nebivolol couple of minor episodes

[Hidden]

Of course it’s good to hear that this regime works for you but we should make folk aware that from what we hear, medics say that regular maintenance doses of Flecainide should be taken in conjunction with either a beta blocker or a calcium channel blocker otherwise it could cause other forms of Arrhythmia which can be more serious than AF. I’m not a medic, but this point was stressed again at this month’s Surrey ASG meeting by Dr Matthew Fay and endorsed by EP Dr Abhay Bajpai……

[secondtry in reply to Hidden]

Good point Flapjack. It may be that because I was an active 60yo with no co-morbidities or problems on a lower dose and intravenously in hospital that the clinical studies recommending a BB or CB allow some interpretation by cardiologists. I have since checked the position twice with my own cardiologist (I see him privately every year) as a result of reading posts here, but no change yet, maybe it will come post 70yo.🤞

[francesturpin in reply to Hidden]

is Bisoprolol considered a Beta blocker?

[CDreamer in reply to francesturpin]

It is - anything with the suffix -olol is a beta blocker.

[francesturpin in reply to CDreamer]

Thank you.

[Hidden in reply to francesturpin]

CD took the words right out of my mouth…..😉

[francesturpin]

Thank you for the positive feed back.I take flecainide since my last ablation for flutter which was successful but I do get afib so my cardiologist wants me to stay on flec it has been 7 months and all is good no episodes of afib. What tests do you take while on flecainide?

I will continue to take flecainide as it keeps the afib away.

All the best!

[secondtry in reply to francesturpin]

Annual Liver & kidney tests plus an ECG.

[Singwell]

I personally preferred Flecainide over bisoprolol because the latter made me sluggish. My legs ached whilst walking upstairs and at 63 I felt 'old'. I prefer Flecainide because I have more energy on it and can walk up hills and do a bit of interval walking too. Bisoprolol also slowed me mentally. I do have hypertension (or did) so am on Diltiazem as well. My lowest dose of Flecainide 50mg X2 didn't stop the AF altogether. I got the episodes about every two months. They'd go on for hours unless I took more Flecainide. So not a perfect world and that's why I went for ablation.

[wilsond]

Agree with you I'm much more stable on Flecanide and tiny dose of Bisoprolol. Took a bit of time getting the dosage right for me but then fine.

Sometimes wake up with mild AF but stupidly dehydrated myself to blame,and some longer episodes every now and then.

I also looked up the effect on liver and various medical sites state that adverse effects on the liver ,even with long term usage is 'mild and infrequent'

So that reassured me a lot

[secondtry in reply to wilsond]

Good to know thanks Wilson.

[irene75359 in reply to wilsond]

Snap! I woke up this morning in AF (first time in over nine weeks) and I was wracking my brains to remember what I did differently yesterday. I was out and didn't have nearly enough to drink. I should know better...

[Sambaqui]

As one of those concerned after being prescribed Flecainide, thank you so much for your positive post. It was heartening to read. If you'd care to share, I'd be pleased to know which supplements you have found useful? I take vit D3, magnesium and Q10 but find it difficult to judge if they are helping anything.

[secondtry in reply to Sambaqui]

My heart beat/circulation is quite sluggish so the CoQ10 (which boosts!) I take, 200mgs weekdays and 100mgs weekend, keeps my level 10% over the top end of the current range, which my Naturopath is happy with. He also prescribed a Mg supplement with Taurine, Potassium and more (Nutri Mag Muscleze) which I take daily (half the recommended dose) plus once or twice a week Mg spray on the body; however my Mg levels stay stubbornly at the bottom of the range but much trial and error suggests this is probably the best for me. Other regular supplements are krill oil, Vit D3 and VitC plus Prostex which has zinc in it.

Of course none of us know whether any of these contribute anything. All I can say is despite having a less than good sleep pattern my energy levels are usually very good, so I will stick to the stats quo for now. Hope that helps.

[Sambaqui in reply to secondtry]

Thanks for getting back. Sounds like something's working for you. I shall think about consulting a naturopath. Here's to the status quo - and maybe more.

[Kent2007]

Can I reinforce what FlapJack says. I was bumped up to a higher dose of felcainide (400mg per day, no beta blockers at that stage) to counteract the effects on my AF of catching Lyme disease. During this period, AF went haywire - even going for a pee was enough to trigger it. The high dosage worked but I probably stayed on it for too long. When I did have AF events, they were pretty severe. I'm now on 50x2mg flec and 1.25x2 bisoprolol per day. It's not 100% effective but the AF episodes I get are much milder. But, we're all different.

[secondtry in reply to Kent2007]

Wow Kent 400mg is scary, I thought 300mg was the limit. Interesting you mention Lyme Disease, I had an infected tic bite and antibiotics in the same year my AF started in earnest. Also, in case you have not discussed 100x2mg Flec with your cardiologist, initially 50x2 didn't stop mine and I think it is important it is stopped completely.

[ColbyLH]

Nice to hear no major problems..I have been on a 50x2 dose of Flecainide for 6 years now for frequent pvcs..(26,000 per day) and after 2 weeks on flecainide went to less than 100 per day! All good and no real changes to liver or kidneys at 7Oyo…however, I have noticed some numbness in hands and a bit of shaking and dizziness of late which is part of the side effects for a black box drug…my elelctophysiologist says I could try just stopping it and if pvcs returns, start again…I am afraid to do that so wondering if any of you have tried just stopping…I am worried it might trigger something else….thoughts?

[secondtry in reply to ColbyLH]

I think you are wise not to try stopping particularly going cold turkey, whilst our hospitals are under pressure!

[DKBX]

Flecainide and Metoprolol (both at 50mg, 2x per day) effective after 1 year. Rare and brief ectopics (seconds) is all. Touch wood.

[dedeottie]

That’s great. Flecanide did me proud until it started to widen the QT complex and then sotolol took over the job keeping me AF free till recently. X

[secondtry in reply to dedeottie]

Would be interested to know how long you were on Flec and then Sotolol? Hope things stabilise for you soon.

[dedeottie in reply to secondtry]

4 and a half years on flecanide. It was still keeping AF under control but an exercise stress test showed an elongation of the QT complex so I had to come off it. Sotalol kept it at bay for another 18 months and has now become much less effective as my AF has got worse. I have been waiting for an AV ablation and pacemaker but the decision has been taken to try another RF ablation. The tale behind that is very long and complicated and I’m steeling myself to write a diplomatic post about it so watch this space!

[KMRobbo]

Great 👍

[Paulbounce]

Got the tee shirt for Flec and Sotalol.

Flec was the winner for me and first past the post. My cardio didn't give me a small amount of beta blocker with it to stop flutter (doh - Homer Simpson moment) but Flec kept afib at bay for two years.

Paul (Flec fan)

[Finvola]

Like you, secondtry, I have been taking 2x100mg Flecainide for over 7 years but with 2.5mg Nebivolol and I've had no AF at all in that time. So, it's encouraging to hear positive news about the drug. I often think of another member of the forum who has been taking it for over 20 years.

Lifestyle changes and cutting down stress (or, more correctly, stress management!!!!!) are essential to get the best from the therapy.

[secondtry in reply to Finvola]

Good to know, thanks Finvola. A member recently posted he had been on Flec for 35 years 👏, I didn't even realise the drug was that old. Yes, I agree stress is no 1 cause and most of us just don't pay attention to controlling it (sorry, managing it) until there is no headroom left for the unexpected. That was my history anyway. 🤞we have another 28 years (35-7) without problems!

[dmac4646]

What time of day do you take your 100g ?