Long term use of Flecainide at high dose - Atrial Fibrillati...

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Long term use of Flecainide at high dose

Sunnyday2022 profile image
54 Replies

I have had paroxysmal AF episodes since 2020 which gradually became more frequent and longer - up to 25hours sometimes.

In March 2024 my cardiologist increased my Flecainide dose to 100mg twice a day with a view to having an ablation later in the year. However the Flecainide at this dose has stopped my AF episodes completely (for now anyway) though I do have some stomach issues which I think may be due to the Flecainide.

My question is: shall I just keep taking the high dose Flecainide and push the ablation into the long grass, or shall I just bite the bullet and go ahead with the ablation sooner rather than later?

As usual the consultant has left the decision up to me as of course he does not want to push me into a procedure which does carry some risk.

Any views?

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Sunnyday2022
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54 Replies
Cliff_G profile image
Cliff_G

200 mg /day Flecainide is not really a high dose, many of us are on that. 300 mg is a general maximum, but the maximum for an individual is judged by acceptable/unacceptable widening/lengthening of a couple of aspects of the ECG.

As far as ablation is concerned, my AF got so bad I was desperate and had an ablation in 2002. The issue of risk was by then irrelevant, I would take any chance of getting rid of it. Then another ablation last September after major open heart surgery brought my AF back. If I had my time again, I'd try to do them earlier - why suffer? But in 2002 ablation was still a new thing, so going earlier wasn't really on.

Also, the earlier an ablation is done, the more successful they usually are.

Hope that is of some use!

BobD profile image
BobDVolunteer

I think everybody here knows I am a fan of ablations having had three for AF till 2008 when my AF finally stopped. Better to at least try than wonder surely?

wilsond profile image
wilsond

I thought the same,flecanide worked so well for quite a while then AF and Flutter simply got the upper hand out of the blue. 2 x 6 and 5 weeks continously highly symptomatic AF and Flutter was awful

I had actually put the ablation onto the back burner. Might not happen to you but you never know!

So I'd say go for it.

CDreamer profile image
CDreamer

Both options carry risks, for me the Flecainide proved to be a higher risk long term than ablation so I’d also say Ablation sooner rather than later.

Cliff_G profile image
Cliff_G in reply toCDreamer

Interesting. What was your Flecainide risk?

Sunnyday2022 profile image
Sunnyday2022 in reply toCDreamer

I would be interested to know what long term risks are associated with Flecainide. That is probably what will persuade me to have the ablation sooner. Also why is ablation more likely to work if you have it earlier? Since I am having no AF episodes at the moment my heart won’t be being affected/damaged - will it??

CDreamer profile image
CDreamer in reply toSunnyday2022

As already mentioned, acquired Long QT syndrome which I started to show signs of and which is an early warning sign that Flecainide could cause other more dangerous arrhythmias such as ventricular tachycardia.

Most experienced EP’s would agree that if you are a suitable candidate and there may be some discussion as to your suitability - age, fitness, co-morbidities, lifestyle etc which will affect your likelihood of successful outcome of long lasting NSR following ablation.

I wish I had been offered an ablation at the earlier stages of AF - but I wasn’t even told it existed back in 2007, it was only through finding the AFA and this forum I learned the questions to ask and the various treatment options, benefits and risks.

Hope that helps.

I am in week 6 post ablation after what many would consider relatively few episodes (4 last year). But I was persuaded by the evidence that early ablations have better outcomes than medication. I personally wouldn’t want to wait until the flecanide stops working as then it might be too late. I am feeling good.

VRR46 profile image
VRR46

I’m on the same flecanide dosage.(circa2years) The medication had proven to be effective for me, but less now.

Have been offered ablation that I will have end of the month. It’s an opportunity to hopefully be AF free and without meds.

As although medication works for most, not sure or comfortable with the long term risk to my general health etc.

Abbyroza profile image
Abbyroza

Sadly enough, I am the living proof that even very high doses of Flecainide (400 mg/day) do not really help in getting rid of AF permanently. It did not.

On the contrary, it increased the number of episodes until they came every two or three days. And those high doses also increased my QTc to above 500, which in turn increases the risk for torsades de pointe, a dangerous arrhythmia.

So, how did I get out of that vicious cycle?

I stopped taking Flecainide altogether. And started taking D-Ribose, L-Carnitine and Q10.

The AF episodes immediately decreased in frequency and stopped after a while. I do still take a betablocker (because I had a heart attack 7 years ago) and anti- coagulation, but no more anti-arrhythmic medication.

I am now in sinus rhythm most of the time, with months in a row without AF. If AF occurs, I take 250 mg of Flecainide as PIP (pill in pocket) which will stop the episode in 2 to 4 hours.

That represents the perfect solution, for me at least.

I would never consider an ablation as I think it is too invasive, too risky, mostly inefficient and involving a too high dose of potentially harmful radiation. My friend, a cardiologist with AF himself, agrees wholeheartedly with this stance about ablation. We both would never consider causing irreparable damage to our hearts unless our AF would become so symptomatic and/or out of control that it would make our life miserable.

My conclusion is: there are so many ways to stop AF, or to moderate and live with it (provided HR is under control) that ablation is about the last thing I would consider.

All the best and eternal sinus!

Karendeena profile image
Karendeena in reply toAbbyroza

I understand it's your opinion and I bear no malice but I think it's unfair and probably Inaccurate to state these things about ablation, especially quoting a cardiologist. There are risks, yes I agree, but serious ones are rare and it's quoted by BHF that it's now a 'minimally invasive' procedure and with new technology is becoming one of the first line treatments for AF. I was struggling and didn't want the QOL that I had with AF and flutter. My ablation was in March last year and seems to have 'knocked it on the head', for now anyway.

Abbyroza profile image
Abbyroza in reply toKarendeena

Two of my best friends -one cardiologist and one MD- call ablations ‘the cash cow of the cathlabs’. That’s enough for me. But of course, if I would have a resting HR of over 100 all of the time while in persistent or permanent AF, I would contribute to the wholy cow and get on with an ablation.

But only then.

Libby22 profile image
Libby22 in reply toAbbyroza

That's nonsense. Here in the UK we have the NHS, so ablations cost the country money! No one is making money from them, unless you opt to pay for a private operation, which no one does because it's so expensive. And in fact, I was reading new NHS guidelines that limit the use of ablation to those who will benefit the most, simply to stop NHS funds being wasted.

Abbyroza profile image
Abbyroza in reply toLibby22

Are electrophysiologists and anesthesiologists working for free then, in the UK? That would be very surprising! If the country pays them via the NHS… who pays the country? You, with your taxes, of course. And why do you think that the pharmaceutical company’s who develop the ablation catheters invite these specialists to international congresses, where they wine and dine them? Cathlabs are very expensive departments of any hospital, who do you think pays for them in the end?

Libby22 profile image
Libby22 in reply toAbbyroza

You could make the same argument for any medical intervention. Or would you support withdrawing all health care as a cost cutting exercise?

Incidentally, for anyone who's interested in the guidelines I was referring to, which weigh up the pros of cons of ablation including cost to the NHS, I won't add the link, but Google 'who will get an ablation in 2024'. It should take you to a page at Barts Hospital. I know a few people here have had multiple ablation, but it seems that in future the limit will be two except in exceptional circumstances.

Abbyroza profile image
Abbyroza in reply toLibby22

‘Multiple ablations’ as in ‘not efficient the first times’.

TracyAdmin profile image
TracyAdminPartner in reply toAbbyroza

Hello Abbyroza,

Thank you for your comments. it is well known that procedures and health authorities are differentiated around the world. Everyone is entitled to their own opinions, so please ensure all replies are courteous.

Thank you for your understanding

TracyAdmin

Abbyroza profile image
Abbyroza in reply toTracyAdmin

I would not dare being uncorteous or rude. Unless criticism is confused with rudeness.

Karendeena profile image
Karendeena in reply toAbbyroza

Sometimes people need a 'top up', I had this thoroughly explained to me. It increases success rates from around 80 to 85% to 90 95%

Abbyroza profile image
Abbyroza in reply toKarendeena

Average success rate of the first ablation is rather around 60%.

Karendeena profile image
Karendeena in reply toAbbyroza

Totally disagree, my EP who is a top Professor in his field quoted (and showed me) statistics of 80 to 85%

Abbyroza profile image
Abbyroza in reply toKarendeena

PubMed, 2023 study:

“Sinus rhythm at 2 years was considered success. The overall success rate of maintaining sinus rhythm at 2 years was 56%. Success rate correlated significantly with age and standard risk factors. Those patients in whom the index procedure was the first ablation, success rate was 78%. Sixty-one patients underwent a second ablation with success rate of 64%, 32 underwent a 3rd/4th procedure with success rate of 56%. The probability to be in sinus rhythm after 2 years regardless of the number of ablations was 78%. Thirty-five percent of the patients were still on anti-arrhythmic therapy at 2 years post procedure. Complication rate was 6.6% (2.5% serious), among them 2 deaths, 1 procedure related. PVI in a real-world large unselected population is a valid therapeutic option for AF with an overall 2-year success rate of 56%. In our group higher complication rate was observed compared to the reported rate in the literature. The use of cryo-ablation for PVI and further improvements in both technique and experience may improve both efficacy and safety profile.”

Karendeena profile image
Karendeena in reply toAbbyroza

Out of date statistics 2023

Abbyroza profile image
Abbyroza in reply toKarendeena

These are the most recent data available, upon which the ‘80%’ that your EP mentions, is based.

Sunnyday2022 profile image
Sunnyday2022 in reply toAbbyroza

But the pharmaceutical companies will be making a fair bit on long term Flecainide use by many thousands of people so surely that is a ‘cash cow’ as well?

Abbyroza profile image
Abbyroza in reply toSunnyday2022

Not for the cardiologists, electrophysiologists and hospitals. They’re not interested in medication, they thrive on procedures.

CDreamer profile image
CDreamer in reply toAbbyroza

All cardiologists & EPs are salaried via NHS. UK & other Healthcare systems around the world have much lower prices than US

Karendeena profile image
Karendeena in reply toAbbyroza

This I totally disagree with. My EP tried everything along the medication route but couldn't increase the anti arrthmics any more as my BP was too low. He explained the pros and cons and left the decision with me

Abbyroza profile image
Abbyroza in reply toKarendeena

Bravo for your EP. He’s a rare exception and a credit to the profession.

Karendeena profile image
Karendeena in reply toAbbyroza

He is the President of the British Cardiovascular Society. Extremely experienced and held in very high regard. Don't normally quote him but don't think you can get much better consultant than that.

Abbyroza profile image
Abbyroza in reply toKarendeena

By the way: anti- arrhythmia normally have no influence on blood pressure. Rate control medication such as betablockers do.

Karendeena profile image
Karendeena in reply toAbbyroza

Sorry but I don't know where you are getting your information from but Sotalol (anti arrythmic) DOES reduce BP. Again my EP explained this to me and it actually states this in the information leaflet. It is a beta blocker and anti arrythmic combined. Anyone on this drug will tell you the same

Abbyroza profile image
Abbyroza in reply toKarendeena

I have taken Sotalol for over 4 years. It’s a combination of anti-arrhythmic and betablocker. The betablocker part of that combination has the BP lowering effect, like almost all betablocker.

Karendeena profile image
Karendeena in reply toAbbyroza

That's what I said. It's different to flecainide

Abbyroza profile image
Abbyroza in reply toKarendeena

No, with all due respect, you wrote that ‘Sotalol (anti-arrhythmic) DOES reduce BP’. That is simply not correct, the anti-arrhythmic properties of Sotalol have NO influence on BP. Its betablocking action has, like all betablockers. I like to share the correct information here, because I do not want any member here, who is taking an anti-arrhythmic, worrying about BP- influencing effects that it does not have. Or worse: counting on it.

Karendeena profile image
Karendeena in reply toAbbyroza

So Sotalol does reduce BP in its entity, you are just separating the two elements

Abbyroza profile image
Abbyroza in reply toKarendeena

Only Sotalol’s beta-blocking properties are influential in affecting blood pressure, as they reduce heart rate and decrease the force of contraction, leading to lower cardiac output and blood pressure.

Its anti-arrhythmic properties (class III potassium channel blockade) are in action when sotalol is prescribed for arrhythmias. These properties help maintain normal heart rhythm by prolonging the action potential and refractory period, reducing the risk of arrhythmias.

Karendeena profile image
Karendeena in reply toAbbyroza

Yes, but on the whole the medication Sotalol does reduce BP that's all I am saying. Don't think the details matters in this discussion

Karendeena profile image
Karendeena in reply toAbbyroza

Cath labs are there for those who need procedures that involve catheters of course and that goes for ablations too!

Karendeena profile image
Karendeena in reply toLibby22

Agree 💯👍

Karendeena profile image
Karendeena in reply toAbbyroza

Nice one! Yes, sometimes there isn't an alternative ☺️I go with my EP, I don't normally quote him but he is recognised both in this Country and internationally. He heads up a lot of research and I know he favours ablation early on as there is more chance of success. He said that the scarring is minimal.

MikeThePike profile image
MikeThePike in reply toAbbyroza

Anyone who regularly takes flecainide should have the their hearts regularly monitored because this drug can cause dangerous arrhythmias without warning. What others have found is that when it stops being effective it starts being dangerous. I would sooner take the ablation then the Flecainide. Remember Flecainide does not cure anything.

Abbyroza profile image
Abbyroza in reply toMikeThePike

Absolutely correct as far as the ‘getting dangerous when it stops working’ part is concerned. Although it can be predicted by checking the QTc-level. Above 500 (Bazett) it’s becoming worrisome.

Bee-Honest profile image
Bee-Honest in reply toAbbyroza

Interesting ....I am on 300mg of Flecainide daily along with Bisoprolol, Losartan and Apixaban.

I moved from PAF to Persistant 18 months ago and found this restricting my life and not pleasant. Cardiologists (2 opinions) wanted me to have an ablation, unlike the Cardiologist I saw privately about 8 years ago who said the risks outweighed the benefits for me, and I've known two people whose quality of life has been poor after 2 ablations! I refused and stayed on Flecainide (been on it for years). Eventually about 3 months continuous AF recently I decided to take Magnesium Glycinate 600mg, after a month my heart went back to Normal rhythm and still is. Might be coincidence, but was worth a try.

Thomas45 profile image
Thomas45

I was on Flecainide for 12 years, the last 10 being at 300mg a day. An ablation was never offered during those years as Flecainide reduced AF episodes to 0-2 ten minute episodes a year.After 12 years I was found to be in Persistent AF. That was about 7-8 years ago. I have acknowledged that the persistent is Permanent as I have not knowingly been in Normal Sinus Rhythm in those years. Fortunately my permanent AF is asymptomatic.

Having lived alone, apart from feline complications, for most of my adult life, some options have not been available to me. I could not have sedation when I had colonoscopies, as you had to be with another person for 24 hours after the procedure.

When I had a major asthma attack in 1983, I spent 12 days in hospital. A near neighbour and his wife insisted I stayed at their house for a week after I was discharged. That neighbour and family moved a few years later.

Had I been offered an ablation would it have been possible to have without post procedure support from another adult,?

TracyAdmin profile image
TracyAdminPartner

Hello

Flecainide is a very popular medication prescribed in the treatment for AF. All medications will be prescribed at a dosage to suit you by your doctor. Many often find the dosage changes and altered until the correct dosage to help on an individual basis is found. You may be interested in downloading the 'Flecainide' information sheet available on AF Association website: api.heartrhythmalliance.org...

If you have any concerns regarding your medication, please speak to your doctor. Many of the members have offered their advice, but this does not substitute a conversation with your own doctor, alternatively, please contact a member of our Patient Services Team: heartrhythmalliance.org/afa...

Kind regards

TracyAdmin

information sheet
secondtry profile image
secondtry

Assuming you have no other comorbidities, no other heart issues, average or below stress levels and your stomach issues are not too serious and can be resolved (with a Nutrionist) in the short to medium term....I would go for the Flecainide medium dose at 200mgs/day with a view to taking it for 5+ years. Ablation procedures are improving all the time.

I was similar with 200mgs Flecainide (at 60yo) stopping my AF for 10 yrs with various lifestyle changes included. Last year it kicked off again and I am now scheduled for an ablation.

Incidentally I was also prescribed no accompanying BB or CB and turned down anticoagulants for 10 years , only starting the latter last year, which have already raised a minor issue or two.

Sounds like you have a good consultant and back your gut feel!

Ask the consultant what he would do if he was in your position and why. He knows your circumstances better than we do. Everyone else will have their views. However they will be influenced by their own experiences and circumstances..... and we're all different. So you might fail where they succeeded or succeed where they failed.

My experience:

As I've stated in past replies to other similar posts, I am medicated and consider my paroxysmal AF to be low burden. My quality of life is hardly impacted by my AF at this stage..... but I know it is highly likely to change for the worse at some stage. However, unless/until ablation offers an improvement in my quality of life that in my mind justifies an ablation then I will stay medicated. That equation will change if my AF burden increases enough or if ablation procedure becomes more attractive to me e.g. safer, greater likelihood of enduring success and minimal negative effects of procedure. I know I'm asking alot....but my life is almost normal on medication. Why go through a procedure that will permanently impact my heart, with risk of complications and an unattractive recovery period to achieve what I already have (albeit using some pretty serious medications)?

YMMV...... and I expect it will, because we're all different :)

Abbyroza profile image
Abbyroza in reply tobean_counter27

Very good points.

Sunnyday2022 profile image
Sunnyday2022 in reply tobean_counter27

Yes that’s where I am at the moment. Why risk upsetting the apple cart when my quality of life is not being affected by AF - apart from the medications of course. I will take into account all the opinions expressed here and then take a view 🤔

CDreamer profile image
CDreamer in reply toSunnyday2022

Well you have heard both sides of the argument, risks and benefits. Good luck and let us know what you decided and why as it may very well help others.

Breezera profile image
Breezera

@Sunnyday2022 - I was diagnosed with PAF about 17 years ago (at age 51) and was initially put on a betablocker (metoprolol) together with propafenone, which helped keep the AF episodes away. That medication combo worked well for me for 5 years or so, at which point I began having occasional AF episodes once again. My cardiologist then replaced propafenone with flecainide. Flecainide worked well for me for another 5 years or so until it didn't any longer. I was then put on disopyramide which didn't work well at all to stave off AF and actually made me feel pretty awful. At that point I was having AF episodes quite regularly (3-4 times per month) and I was desperate to have the "AF demon" eradicated once and for all - so I was suddenly "all-in" for an ablation. I was put on an ablation waitlist at the end of 2017 and finally had my PVI cryo-ablation carried out in August 2018. The procedure was a total success and I've happily been completely AF-free since that time (i.e. almost 6-1/2 years now). :) My QoL was restored. I wouldn't hesitate to have another ablation should the need arise. Like BobD, I'm a big fan of ablations and I strongly recommend you consider having one.

Best wishes,

Richard in Canada

Auriculaire profile image
Auriculaire

My afib has increased in frequency gradually over the last five years. But it has also become less symptomatic. I can't say it's really damaging my QOL. At the moment I don't want an ablation but would consider one in the future if the episodes became a lot more frequent.

Vonnegut profile image
Vonnegut

If you mean wind as the “rare” side effect mentioned in the info sheet, as well as other digestive problems, I have the same. I’ve reduced the first dose of the day with no ill effects in the way of AF but still have the digestive problems I never had before, though they might also be the result of the chronic fatigue I developed around the same time as the PAF, after a virus. At least my brain still works at not far off 81. Losing that would be far worse.

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