Flecainide or Propafenone?

[Cablecar]

Has anyone opted to change from Fleicanide to Propafenone because of side effect issues? If so, what has been your experience?

[mjames1]

I had no side effects from Flecainide but a low dose of Propafenone turned me into a zombie. YMMV.

Jim

[mjames1 in reply to mjames1]

Apologies, I was confusing the beta blocker Propranolol with Propafenone.I never took Propafenone.

Jim

[Cablecar in reply to mjames1]

Thanks, Jim. I was a little worried. I can't take Beta Blockers because I get zombified by all of them!

[BobD Volunteer]

I was switched by my EP from flec to propafanone and apart from a slighty metalic taste at very high dosage (900mg per day) had no problems.

[Cablecar in reply to BobD]

Thanks, BobD. Yours is the most encouraging reply. I'm hoping I get lucky Like you.

[pip_pip]

Beware. I was changed from flec to propafenone and found myself in hospital for a few days because of the unfortunate side effect of speeding my heart (155) into flutter. I had to have amioderone drip to kill it. Wish you well

Phil

[Cablecar in reply to pip_pip]

Thanks Phil, I have asked for the lowest possible dose, because I seem to attract side effects from most drugs.

[ArmyMom65]

I was on Flecainide for 3 months and went from having one aFib episode every couple months to having at least one a week. EP switched me to propafenone last week and a few hours after my first dose had one of the worst aFib episodes ever. Refused to take it again, so now I'm trying to figure out what to do next. I hate my EP, he talks down to me, dismisses my concerns and questions, tells me to "stop reading and talking to people and just listen to me." Uh, dude -- you just dismissed me when I said I think the Flec is increasing my aFib episodes" then he turns around and tells me to take a different med. WTF, over? Currently trying to get in to see a new EP recommended by my GP.

p.s. -- I'm new here. Hello!

[Cablecar in reply to ArmyMom65]

Hello ArmyMom, Thanks for your reply. I'm not looking forward to Propafenone. You might want to look into Dronedarone. This one is meant to have less side effects, but was more expensive. I haven't tried it yet.

[BajaBound in reply to ArmyMom65]

I had the same type of experience as you with four or five different drugs. Flecainide isn't available here, but the drugs they gave me either increased the incidence of flutter and full blown a-fib or turned me into a zombie with very little decrease in symptoms. I worked hard to find my triggers, take a lot of supplements, and am still researching ways to live with this condition. I haven't had a major episode in 3 years, but still get lots of times a day when my heart goes out of rhythm for a few seconds. This is different for everyone, and everyone has their own triggers and deficiencies to explore with trial and error. I am by no means saying don't take the drugs, but only to try other ways. I was getting about 6 episodes a year where I was in hospital as my heart was up to 160 and down to 110 for 3 or 4 days. Now I don't take any pharmaceuticals. Magnesium was a game changer and I encourage you to start there and keep researching!

[ArmyMom65 in reply to BajaBound]

Thanks, Baja! I keep hearing about magnesium and will definitely look into it. I'm also looking into meeting with this local doctor who is an acupuncture physician and naturopath who has very specific views on aFib and has had a lot of success with his aFib patients.

[BajaBound in reply to ArmyMom65]

Good for you! I wish you great success on your journey. I would love to hear what the naturopath says about a-fib. Where is he located?

[ArmyMom65 in reply to BajaBound]

He is in Altamonte Springs, Florida. I just scheduled an appointment for Friday, April 18th. I'll definitely come back and let you know what his views and treatment methods entail.

[BajaBound in reply to ArmyMom65]

Thanks! Thought you might be in Britain, like many here. I will be in London this summer and was thinking I could go and see him, but Florida isn't on the route!

[secondtry]

In the context of heart drugs I understand Flecainide is a tried and tested 'old timer'.

[AtomicPigeon]

My experience was that flecainide was more effective and had less side effects than propafenone.

[Jalopy]

I have PSVT and it was not controlled by Propafenone and I felt exhausted ( on top of having ME/Chronic Fatigue). The EP I saw changed me to Flecainide after having trialled it during an electrophysiology examination and my experience has been very positive. It felt as though my heart had been in for a service and was running like a well oiled machine. I appreciate that everyone will have their own personal needs and experiences.

[Cablecar in reply to Jalopy]

Thanks Jalopy. I'm glad you're doing better than me on Flecainide. PSVT doesn't sound like fun at all.

[Jalopy in reply to Cablecar]

I hope you get a good result whatever route you go down 🤞🏻

[BobD Volunteer]

The advanatge of propafanone over flecainide is that it has it's own betablocking ability so does not need additional bisoprolol or similar.

[Cablecar in reply to BobD]

That might just scupper it for me. I can't tolerate beta blockers.

[BobD Volunteer in reply to Cablecar]

It is not a beta blocker it is an antiarrhythhmic drug but does similarto BB is what I mean.

[ArmyMom65 in reply to BobD]

That's interesting. I wonder why my EP did not tell me to stop taking Metoprolol when he switched me to Propafenone? Maybe that's why I had such a bad reaction -- I took both together.

[Cookie24]

Flecainide did not suit me from the start. It made my palpitations worse. Propafenone works fine, although it interacts with many , many other drugs. You can find a list of these drugs on the Mayo Clinic website.

[Visigoth]

Years ago I was put on flecainide but had to stop taking it after a short time because it made my palpitations much worse. I was then put on propafenone and took it for years with no problems and no side effects. It didn’t stop the palpitations completely but seemed pretty good. More recently when I was diagnosed with AF my cardiologist said “we don’t give people propafenone any more”! Obviously not true. I am now on amiodarone and fine on it so far, touch wood.

[Pommerania78 in reply to Visigoth]

How long have you been taking amiodarone? Thanks.

[Visigoth in reply to Pommerania78]

Four years now

[Pommerania78 in reply to Visigoth]

What do you think of amiodarone and its effects, both good and bad? Thanks.

[Visigoth in reply to Pommerania78]

It’s like a wonder drug for me - it completely stopped my AF and ectopics, and I just hope nothing changes! I know I’m lucky because of course some people do have bad side effects, affecting thyroid or liver or lungs, but research seems to show that these are not common on low doses. I’m on the lowest maintenance dose of 100 mg per day. I have six-monthly blood tests to check thyroid, liver etc, so they would pick up any untoward effects. The only effects I’ve had are insomnia some of the time ( though not entirely sure if this is related) and sensitivity to the sun. You really do have to wear a hat and cover yourself in factor 50 but if you do that it’s fine. I also have corneal deposits but they are of no consequence. I’ve heard of some opticians who get worried about them but my consultant ophthalmologist has assured me that they don’t matter at all! So for me the good effects vastly outweigh the bad - in fact they are not so bad, just inconvenient sometimes.

[Pommerania78 in reply to Visigoth]

You believe the medicine is causing the corneal deposits? Thanks.

[Visigoth in reply to Pommerania78]

Yes, it’s a well known effect of amiodarone

[Pommerania78 in reply to Visigoth]

I have a neighbor who has started amiodarone, maybe two weeks ago. He has a number of heart problems. He has congestive heart failure and has stents. He takes 200 mg of amiodarone, twice a day. Do you think that is on the high end of mg? I'm careful not to say anything to him that might scare him, but since I'm on this site I try to learn things that I might use at some point to help him. Anyway, what do you think about someone taking it long term? Thanks.

[Visigoth in reply to Pommerania78]

I imagine that as he started on amiodarone only two weeks ago, he is still on the loading dose - 600mg the first week, 400mg the second week, then 200mg going forward. So that isn’t too high a dose in the circumstances. 200mg is the normal maintenance dose and not considered to be particularly risky, but in my case and that of some others I have read about on this forum, the maintenance dose was reduced to 100mg after (in my case) a year. Amiodarone does lower your heart rate as well as being a very effective anti-arrhythmic, and I was keen to try the lower dose. It is only in recent years, I think, that cardiologists and EPs have fully realised that it can be just as effective at the lower dose: my EP originally told me that I would have some breakthrough episodes of AF but I haven’t. Nevertheless, 200mg daily is considered a low dose - it’s just that some people are on an even lower dose! My own experience leads me to think that it is fine to take long term provided you have the regular blood tests etc. and my cardiologist agrees with this. There are many I have heard about on this forum who have taken it successfully long term, but of course there are also many who have had to come off it because of the side effects.

[Pommerania78 in reply to Visigoth]

What can you do about the corneal deposits? Thanks.

[Visigoth in reply to Pommerania78]

Nothing. There is no need to do anything about them as they don’t interfere with your vision in any way. Apparently they disappear gradually if you come off amiodarone but my ophthalmologist says their presence is only of academic interest.

[Pommerania78 in reply to Visigoth]

Why do you think the medicine has not harmed you but causes harm in others? Besides medicine, what have you done to improve your situation? Thanks.

[Visigoth in reply to Pommerania78]

I think mainly it’s probably being on the lowest dose, partly luck as well, and partly I’m not someone who usually experiences bad side effects from any medication. Often amiodarone is started in hospital on a much higher dose than I ever had, before lowering to a maintenance dose, and I think that may be why some people suffer bad effects. Other things I’ve done to help my situation are to lose weight (I was a bit overweight), to try to eat reasonably healthily, and to take a reasonable amount of exercise every day.

[Pommerania78 in reply to Visigoth]

What recommendations do you have for someone who has started on the Amiodarone, or anyone who experiences Afib? Thanks.