Apologies if you're reading this twice but I follow this and arrythmia alliance pages.
Just a follow up for those who were interested in flecainide. I initially tried this as a PIP for ectopics that although not considered a significant 'burden', had an awful impact on my life. The PIP approach was very effective for me and so decided to go for the 'dailly' route. I had an ECG on day one and then a follow up on day 5. I was prescribed one tablet a day (50mg) and so took this in the morning alongside 1.25 mg bisoprolol.
I am pleased to say that the flecainide has made a big difference - ectopics not completely gone but certainly improved. They seem to rear their head again late evening and first thing in the morning - possibly when tablet has worn off - it does seem that most people seem to take 2 tablets a day.
In any event, so far so good. I would certainly urge anyone who found themselves in my position and had this offered to give it a go. However, I think I do have some side effects which I hope may disappear with time - tiredness, weakness in arms and legs.
I do have a couple of questions myself if anyone can help?
Is anyone in a similar position to myself and could share their experience?
Why do I see that flecainide is often referred to as a 'toxic' drug?
Is this effective in the long term for anyone?
Is it ok to have a glass of fizz with Christmas dinner?!
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DebbiB28
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50mgs morning and 50mgs evening of Flecainide would be considered a low dose of a strong drug, but also a relatively well tried & tested one. Generally safe I understand provided you are under 70, active and no co morbidities. Anyway 200mgs per day has worked fine for me for coming up for 9 yrs. All to be checked first with your medical team.
Alcohol can cause problems, particularly if you are already having problems so suggest make it a non-alcoholic fizz and even so limit it to one small glass!!
yes I have afib/tachycardia/bradycardia and I’ve been on flecainide 50 twice a day since 2018. Have had an ablation which helped a little bit in the tachycardia part but flare ups. Since flecainide snd 1.25 bisoprolol I have described as my little miracle pill
No side effects with flecainide but when my bisoprolol was raised once to 2.5 I had the walking through treacle tired all the time, but dropped down to 1.25 and ok
Good luck. I did ask once why flecainide was called a toxic drug/blue box drug but have never received any conclusive answers
By the way I am 78 but still on the same dose as when I was younger
I expect/hope you’re on an anticoagulant (I’m on apixaban tried rivaroxaban but kept getting UTIs on that)
As for alcohol well it is said no, but I do very occasionally and will at Christmas probably have a mulled wine, one Prosecco st lunchtime and a gin and tonic during the evening
I find I can tolerate a Prosecco or gin and tonic snd no after effects but everyone is different Really the rule is alcohol free I tried an no alc wine and horribly sweet I believe there are some nice ones around including sparkly now not the same of course but better than an attack of afib
Thank you for responding. I have the same issues with bisoprolol and am also on 1.25. Definitely can relate to the walking through treacle! When on 2.5 I felt as though my body couldn't keep up with itself if that makes sense. I didn't really feel that bisoprolol was doing anything but now with the flecainide there are improvements. I wanted to stop the bisoprolol but was told it works hand in hand with the flec. No blood thinners as such - daily aspirin. I'll just have one glass of champagne at Christmas and am looking forward to it! Enjoy yours and thanks again!
I think a Christmas drink is fine, but too much fizzy drink might, along with the Christmas meal, distend your tummy and push the diaphragm upwards against the heart and spark off ectopics.
I have read that anti-arrhythmic medications are generally more toxic than rate-controlling drugs such as the beta-blockers. This is, I gather, because they can be "pro" arrhythmic with a slight rise in dangerous ventricular arrhythmias. I would think that your doctor would have weighed up the pros and cons in your case, so you can feel confident all will be well.
It's definitely just one glass to savour! I'd be too nervous to have any more. I'm on a very low dose at the moment so hopefully more pro's in my case. I did get to the stage where I thought 'what have I got to lose by trying'. Thank you.
Alcohol and afib is a very individual thing, what affects one does not necessarily affect all. The same is true of all "triggers". Personally, alcohol does NOT trigger my afib at all (thank you Jesus!), and neither does caffeine. While true for me, not true for many others. Triggers are a trial and error situation, one size does not fit all.
I definitely had problems starting bisoprolol it took me about 3 months to feel the benefits of it, found over time the highest dose I could tolerate was 1.25 mg
zombie feeling could not mentally and physically operate normally,very hard to explain to anyone,but with time has improved and I now feel quite normal!
I take bisoprolol 1.25 twice a day + flecanide 50 Mgs twice a day, this dose has been reduced over time
I don’t feel I have had any side effects from flecanide apart from the odd flashing lights and flecanide definitely helped my palpitations
It has taken me over a year to feel better from diagnosis of AF and ablation , if my palpitations are more apparent I may take a extra flecanide which has been advised by my electrophysiologist, but can’t compare how I feel now to a year and a half ago
I do drink alcoholic drinks not lots but enjoy what I have think it’s a bit of trial and error and it’s a personal choice !!
I didn’t drink for over a year and decided to try and see what happened because I like a drink !!
i'm not great with the bisoprolol and hope I can come off it at some point. I seem to be the only one taking flecainide once a day but it is helping. As ectopics increase evening/morning (probably when effects have worn off) maybe they will suggest one tablet twice a day instead. Either way I'm grateful and hopeful that it's made a difference. However I always feel that it's 'waiting to get me' if I get too complacent! As for alcohol I've been virtually alcohol free for the past year and doesn't seem to have helped so will look forward to a glass - I also enjoyed a drink and must say I've missed it! Makes me sound like I drank a lot, but no all within good limits! Overall it would be wonderful to escape thinking daily about whether or not I can keep the events at bay! Freedom of mind! Best wishes!
I have literally just started my first dose of flecainide 100 mg twice a day I also take bisoprolol 3.75 and edoxaban my AF has just turned persistent and am now in my 5th week so hopefully the new medication with calm it down although I have felt fairly ok with it. Ad soon ad I went into AFib this time I stopped drinking any alcohol (not a big drinker normally just a couple of wines) and caffeine there are a couple of decent sparkling alcohol free wines out there one I think is McGuigans not too bad also elderflower cordial with tonic is a nice adult drink almost like a vodka or gin and tonic beats diet coke ! Now waiting to see what this flecainide does to me hopefully nothing nasty !
If it's any help to you the flecainide for me has certainly made a difference. I'm currently on a very low dose but have noticed a change so fingers crossed for you. Thanks for the drinks advice, elderflower mix sounds nice!! I'm still going for my champagne Christmas Day!! Let us know how the flecainide goes for you please.
My symptoms are mainly 'ectopics' but I do get racing and fluttering heart. I have also felt breathless on occasions/days but has never become significant. However, in my case certainty, anxiety makes it worse. Best wishes.
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