Flecanide

[Gillybean123]

Hi everyone, found out from specialist that flecanide is potentially harmful to the heart. Has anyone else had any problems with it. Just read that a lady had been on it for 20years so would you advise not to worry about it.

[pattiannj]

Flecainide has been a life saver for me & as I understand it the drug is safe if you don’t have any other underlying heart problems.

[pottypete1]

I have been taking it for 25 years and have no intention of stopping right now.

Yes it has side effects, read the notes with the tablets it runs into two pages but so it does for everything we have to take to control our ailments.

Having said that many have been able to wean themselves off it and if you can stay AF free it is a good idea as we would all be better not rattling around with all these tablets in us.

Pete

[Gillybean123 in reply to pottypete1]

Hi there hope you don’t mind me asking how old you are?

[pottypete1 in reply to Gillybean123]

71

[Gillybean123 in reply to pottypete1]

Relatively young man then, I am 68 started AF 2012. Was gonna no to have my second ablation but feel really well at the moment. So thinking about leaving well alone.

[pottypete1 in reply to Gillybean123]

As long as you maintain NSR then there would be little point in ablation but if it is Paroxysmal Atrial Fibrillation (PAF) coming and going then you should seriously consider taking the opportunity ir it is offered as for a very high proportion of AF sufferers it is a successful option leading often to the chance of being drug free too.

Pete

[Gillybean123 in reply to pottypete1]

Hi me again, my gp and specialist both say have it done but then they tell you all the things that could happen while having it done and it scares me.

[Gillybean123 in reply to Gillybean123]

Mind you major thunderstorm now and that scares me ha ha.

[pottypete1 in reply to Gillybean123]

Oh yes and I have also been struck by lightning.

Maybe I am just lucky.

Pete

[pottypete1 in reply to Gillybean123]

1732 killed on UK roads in 2015.

I think you will find that ablation complications in the UK are somewhat less.

I have had 20 cardioversions and 7 ablations, the exception to the rule, now free if AF and here to tell the tale.

Pete

[hock217 in reply to Gillybean123]

Mine was fine. Went home 10 hrs after ablation. I like quick fixes.

[Alpaca555]

Hello Gilly... I would recommend that you watch Dr Sanjay Gupta’s YouTube video on pills pills pills.. it’s very appropriate to this conversation... I am on flecainide 100mg x twice a day and also Apixaban 5mg x2 ... I struggle with flecainide dizzy, pains in joints legs, foggy brain etc etc and I would love to drop the dose or come off it...

🌻

[BobD Volunteer]

The truth is that flecainide can be dangerous if there are potentially problems with the cardiac arteries as dangerous other rhythm problems can ensue. This is why is is normally started in a controlled hospital environment for a couple of days or after suitable checks have been done. It should not normally be prescribed initially by mere GP level but by a consultant .

Provided that these protocols are followed it is no more dangerous that any other drug.

[Gillybean123]

Thank you.

[Finvola]

Gilly - I have been taking 2 x 100mg Flecainide for 4 years and the only side effect I have noticed is an occasional short run of tachycardia. My EP said that it is caused by Flecainide organising my rogue signals. This is why it is normally recommended that a beta blocker is taken with Flec to slow the heart rate.

In those 4 years I have been AF free - so it has been a real friend for me. Any drug will have the potential to cause effects beyond its original purpose in some people.

We each have to weigh up the benefits to us, whilst being aware of potential risks of any treatment for the symptoms of AF. I hope you get the relief and quality of life from Flecainide that I have had since 2014. Best wishes.

[Gillybean123 in reply to Finvola]

Thankyou. X

[Angie06]

Hi Gilly, I've been taking flecainide 2x50mg for 10yrs now since first diagnosed and have never had another AF attack although plenty of ectopics since then. I haven't had any noticeable side effects although can't drink more than the occasional glass of wine now as it affects me and any other aches and pains I've put down to old age! I'm 68yrs and don't want to rock the boat by stopping my flecainide.

[Kevinder23 in reply to Angie06]

How does it effect you when you have a glass of wine? X

[Angie06 in reply to Kevinder23]

I'm not too bad if I have a glass with food but any more than that just makes me feel dehydrated later in the evening and hungover the next day. 😀🥂

[Kevinder23 in reply to Angie06]

Thankyoux

[Gillybean123 in reply to Kevinder23]

Hi there, I stopped drinking totally last November, I decided enough was enough alcohol and AF aren’t a good match. I do miss having a drink especially at night. But I don’t like ending up in hospital. They ask you about drinking and I always fibbed about how much I drank. My hubby and I always liked a drink it was part of our lives as if we deserved it after a hard days work. Now he has gone and I have AF I stopped totally. Feel lots better haven’t been in hospital with AF since. Had a couple of bouts which calmed down at home so the demon has been chucked out. I am too scared to even touch the stuff any more. Xx

[Kaz747 in reply to Gillybean123]

I haven’t been drinking either and I was a bit nervous when a friend served up drunken strawberries with cream for dessert on the weekend. They were marinated in Cointreau and were delicious and I was fine 😃

[Bagrat]

I have been on flecainide since 2011. Only one episode of AF since ( viral infection 2013). A couple of years ago I was able to reduce dose to 50mg twice a day. Yes the potential side effects in leaflet are a bit scary ( those on websites even worse) but it suits me.

[Morzine]

Hi gilly , I see flecainade as my savior.....I’m a new afib person, and felt my life was over....cardio tried different drugs but now he’s upped my flecainade to 150 a day I’ve fekt normal...just two brief ten min afib...,.i see it as my hero....had a few side effects the first few weeks but they’ve drifted away..thankfully....one was weird but it could have been bisoprolol which I take also...my vision went blurred fir a few weeks...and headaches.....it’s all calm now and I can’t inagine stopping dear ol flecainade!....as I’m a newbie I was surprised my cardiologist, seems keen on the ablation...I’m paroxysmal afib,,...it’s quite hard fir me as in in France and the whole time we speak French....so I’m nit sure if I get things slightly wrong.....but I may have one next year if he’s keen, but right now I’m happy with my wonderful tablsts that keep me normal....

[Gillybean123 in reply to Morzine]

Hi Morzine, I take bisoprol as well and 200 mg flecanide and 50mg if needed because I have had two silly bouts which calmed down at home. My pulse in a bad bout has gone up to 250 a few times but these light bouts it only went up,to 90 but if your pulse is only normally 50ish then it makes you a bit unnervey. Anyway still in a quandary about having second ablation done waiting for them to get back to me. What a lovely very place to live is that choice or work?

[Morzine in reply to Gillybean123]

My whole family live here so we moved here, it is lovely. My cardio said take an extra bisoprolol if I get another attack....it’s odd how different chaps says different things.....the cardio here seems keen on the ablation...it’s early days with me, but will do it eventually if he thinks so....but I’m so happy to feel normal at the mo I want no interference.......yes my pulse now is around the 50s I guess that’s the bisoprolol....I panic if it rises too much.....

[Jacqlihe]

Hello,

Yes I had a major problem used it as PIP as recommendedby my cardiologist, for several years, the after my first ablation as part of my mediication

Then , on instruction increased the dose when I had a bout of AF then had a very long bout and ended up in A and E who cardioverted me but said my heart had stopped on its own !!! So they didnt have to do it as part of my cardioversion

Not corroborated so??? But the general opinion is Flecainde did something so its a NO on my notes

The main thing too remember here is that s me , notoriously bad with every drug anyone has come up with and the bottom line for me is dismal side effects possible build up and they do -nothing - to help anything with the condition and advwersely affect my quality of life ( which is pretty boring!!) and you, and anyone else could be fine with it and probably are

But in answer to your question yes but sorry about the length of the reply, I did have to give both sides!!

[secondtry]

I think the consensus amongst us here and medics is that Flecainide up to 200mgs/day is as safe as it gets for most if you have Lone PAF and no other co-morbidities; I have taken this 'medium' level for 4+ years without any known issues.

A key point I believe re Flecainide and ablations is you have to get stabilised to nil episodes as a priority because the longer you have episodes (using PIP perhaps) the more the condition will develop and the less effective Flecainide & ablations will be.

Re ablation itself, to cut a long story short, unless you think your physicality is A1 I would postpone, this assumes your QOL is good, which sounds the case. If you did decide to postpone though, I am afraid I don't think you can be complacent with fingers crossed but that you still have to look at your whole lifestyle & related issues and make changes accordingly.

I have done a huge amount over 4 years which has been the toughest thing I have done in my life and it needs loads of perseverance and I would say an interest in health matters generally - is it worth it? Well, when I sit here feeling fine and knowing I have made huge improvements all round, a definite YES! Good luck whatever you choose.

[TerriMo]

I was on flecainide for 8 years and weaned off 2-3 months ago....I'm losing track of time! For me it has been good to stop taking it. I had a lot of side effects with it while on the lowest dosage, but some people do well on it. Overall, I believe it is a strong med and my DR said he doesn't typically recommend it. The dizziness and off balance feeling I had on a daily basis is gone! I am hardly ever dizzy and the weird feeling of being off balance is gone completely. My symptoms though, are not better or worse.

[lilyj54]

I reacted very badly to Flecainide.

For some people it is not at all helpful ...I am one....

I guess we are all different in our sensibilities and side effects.

Amioderone short term was a life saver to me, though I know many people can’t tolerate it.

Bisoperlol leaves me exhausted but at times that has been the better option.

Right now I am fairly symptom free....🙂