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Third Episode of Afib and flecinaid question

HopeinHim profile image
17 Replies

I had my third Afib episode and a cardioversion about 2 weeks ago. I have the type of afib that my heart goes super fast. I am in NSR again. I saw a new EP last week that just started in my city so I don't have to drive. He wants me to start twice-daily flecinaid. I am very nervous about this but also nervous about needing another cardioversion. I am also on Metropolol. He also said losing 10% of your body weight also helps. Any thoughts?

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HopeinHim
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17 Replies
BobD profile image
BobDVolunteer

Weight loss and aiming for a BMI of less than 25 is proven to help AF burden for sure. Flecainide helps a lot of people at 100mg twice daily but there is an absolute maximum 24 hours amount of 300mg,. Like most drugs it doessn't suit all people but worth a try.

jeanjeannie50 profile image
jeanjeannie50

You say you have only had three attacks of AF. In that case I think I would be reluctant to start taking Flecainide daily so soon. Could you perhaps suggest to your EP that you take it just when you have an attack as what we call a 'pill in the pocket' or PIP?

Of course there could be a very good reason why your EP wants to start you on such a strong medicine, after so few episodes. Do you know how fast your heart was beating? Were your attacks spaced out over a long time?

As Bob has said, losing weight is the better option if you are overweight. Also try to eat a healthy plant based diet and avoid anything that contains artificial additives.

Jean

pottypete1 profile image
pottypete1

I agree with both Jean & Bob.

For reassurance, should you do decide to follow your EPs advice I can tell you that I have been taking Flecainide twice a day for over 25 years. I have not been aware of any obvious side effects despite the list issued by the manufacturers going into two pages.

Pete

HopeinHim profile image
HopeinHim

Thanks for the replies. My heart rate got to 160 and fluctuated between 140 to 150. It just wouldn't go down. My dose would be 50mg 2 times daily and he thinks the dose would need to be increased. Last year they tried Multaq and my body didn't tolerate it well. I think because they opted my Beta Blocker at the same time. My lower body felt like it was going numb. They considered it a bad reaction. I have a lot of weight to lose. Already have lost 50# over the last year whih he said probably helped to stave off episodes. I was allowing myself more junk and salt and chocolate but nothing like I used to. I also have an enlarged aorta which is monitored. What amazes me is that my mom died rather unexpectedly in January and I got through all that without an episode! Thanks for the caring and encouragement! This is a wonderul place for sure. I am on Warfarin so I am good with that.

secondtry profile image
secondtry in reply to HopeinHim

AF appears to strike not during a traumatic episode (like your Mum passing) but afterwards sometimes weeks, months or even years. I'm with your EP, 50mg x2 per day didn't stop my AF but 100mg x2 did; it is a relatively old drug and so less risky but could be if you have some heart issues, not sure if an enlarged aorta is one, but check it out with your EP. My approach would be to get stabilised AF free first, which buys you time to make lifestyle changes including the weight and identifying possible triggers e.g. in my case triggers were cold fizzy drinks, alcohol, stressful social occasions, lying in bed on my left side, eating a late dinner (eat light at night and don't retire for 4+ hours), revisiting the place where I had a bad episode, working too hard then collapsing at night. Hope something there helps, Good Luck!

Newmanbac profile image
Newmanbac

Flecainide

MS444 profile image
MS444

Flecainide doesn’t work for everybody and I had to reduce the dose to 25mg twice daily. As said above, after only three episodes taking Flecainide only when you get an episode might work (pill in pocket)

I had only one episode of fast AF in July which left me feeling awful, with dizzy spells, frequent short burst of rapid heart rate and ectopics. (I believe I may have had briefer, undiagnosed episodes for up to a year before diagnosis). I saw a cardiologist privately to avoid NHS waiting list and was prescribed Flecainide 50mg and Apixaban 5mg both twice daily in August.

My symptoms reduced over about six weeks and, apart from occasional palpitations and a few ectopics, I have been fine since.

We are all different and this includes both our physical reaction to medication and our attitudes towards them. Personally I feel safer on my regular meds with the knowledge that I can also take extra Flecainide as PIP if AF breaks through.

I too have quite a bit of weight to shift in the coming year.

Best wishes for 2019

Pat

Summer60 profile image
Summer60

I had very fast AF and over the period of just a few months had to have two cardio versions to get back into rhythm. I now take Flecainide 50mg twice a day and touch wood, everything is going well

AIW58 profile image
AIW58

I'm 58 female had a CT angio before starting Flecainide 50mg twice a day. My cardiologist said Flec not advised for anyone with underlying heart disaese (ie poor coronary arteries). Haven't read that anyone else has had that. I started it in Sept and am really pleased. I used to get one or two episodes a year very fast (140-180) lasting 3-4 hours. This year I got more frequent episodes hence starting regular Flec. My doc said it was better to prevent the AF rather than wait for it to happen and treat with PIP. This helps prevent the remodelling associated with AF. I'm on waiting list for ablation. Being on Flec I'm so much more relaxed as I don't worry each day whether I'll get an episode. So for all I know it's placebo and being more relaxed is the real help! It is also important to look at life style and drink plenty plain fluid. I'm not on any other meds.

Anyway as had been said before, we're all different but it probably worth giving regularFlec a go.

Good luck.

KMRobbo profile image
KMRobbo

I was similar to yourself in that if I got afib it was fast 130 to 190 resting. I had approx 12 epsodes in 20 months , but towarss the end tbey were more difficukt to stop, and the last would not go away and was in that state for 8 days before finally being cardioverted by flecainide infusion. I was asymptomatic at high hr , but after 8 days I was shattered. I then had to go on on daily 2 x 50mg flecainide with 200mg diltiazem rate control. (I don't tolerate beta blockers ). I was put on daily flec rather than PIP as it was demonstrated it was easier to keep me in NSR than to get me back from 190 bpm when it kicked off. The diltiazem was necessary owing to the fact that flecainide has a possibility to cause fast heart rates even if they are in rhythm. As I demonstrated a tendency for the fast hr version of afib it was seen as necessary.

I got rid of the whole lot by having an ablation last January which stopped the afib and I have been drug free since may 15.

Anything else you need just ask

WendyWu20 profile image
WendyWu20

I too have fast AF. I was prescribed Flec x2 daily but didn't notice any difference in frequency of episodes. So I now only take 50-100mg when my heart starts throwing lots of 'wobbles' and I feel I may go into AF. Usually it settles down but it is hard to know for sure if it's actually preventing an episode.

I have lost 30kg in the last year, but to be honest I haven't had any less AF episodes. However, I now feel fantastic when I'm not in AF :o) I eat small portions and only eat/drink very healthily. Lots of salad and veggies and nuts, and I have so much energy! I have NEVER been any good at 'dieting'... but the thought of being able to prevent an episode by eating healthily has definitely done the trick and I'm a good girl now :o)

Good luck!

ILowe profile image
ILowe

Lots of good advice here from different angles: Stay on Flecainide for a long while, for various reasons.

1/ Until you get other things under control such as weight.

2/ There comes a point where it is easier to stay in NSR by daily flecainide than it is to risk the PIP failing, then the long waiting lists for electrocardioversion. This is the point where I am currently at so I sympathise. In some countries you could get an electrocardioversion 2-3 days later, which would greatly improve the chances of success, but I think this is rare in Britain. Everyone is different. I know someone who thrives on a very low dose of flecainide + PIP supplement when needed. This has always worked.

3/ Most reversions of the electrocardioversion occur early, hence the importance of keeping the lid on it for at least six months.

Where is the wiggle room? The dosage of flecainide + name and dosage of the small amount of betablocker that goes with it. That is another subject.

cuore profile image
cuore in reply to ILowe

There is a similar waiting time for cardioversion in British Columbia, Canada. I am going to be cardioverted tomorrow after a 66 day wait. So, with this long wait time, I do wonder how soon arrhythmia will occur.

ILowe profile image
ILowe in reply to cuore

Yes, you are right, the longer you leave it, the lower the success rate since the heart starts to adjust, remodel, when misbehaving. The usual first excuse for delay is to make sure you are anticoagulated. That does not apply once you are on them. Then the next excuse is that they require several results "in range". Now there may be cases where someone is so unstable this is a factor, but it is pretty easy for most people to boost the dose a little so you are above 3, then stay there for a few weeks. Metallic heart valve patients have an advantage here, we work to higher ranges routinely. Each time I had an electrical cardioversion my INR was >4, to our mutual satisfaction. When you think it only costs around 200 pounds sterling if you are in Tunisia if there are no complications!

HopeinHim profile image
HopeinHim in reply to ILowe

Thanks so much for the reply! It helps to know I am not alone and it does make sense. I need to trust the EP and get my behind in gear to make the necessary changes.

dmac4646 profile image
dmac4646

I have been on 2X50mg Fleca for 12 years the PIP didnt work for me but this relatively low does. It could stop working anytime and then would need to consider ablation.

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