Hi,
The Cardiologist has put me on the list for an ablation and has increased my Flecainide from 100mg twice a day to 150mg each time.
The waiting list for ablation is approx one year.
Has anyone had experience of being on this dose for a prolonged period of time?
Thanks
Mike
What was the reason for the increase?
My HR raised from 60bpm to 84bpm average and is not falling back to the lesser figure...
Interesting. Can you get an ablation somewhere else? Not sure if that is possible with your insurance.
Are you in AFib at 84bpm?I am not medically trained but 84 BPM is not high.
Flecainide is a rhythm control drug , ie keeping you in sinus rhythmn and out of AFib.
If the rate was too high I would have expected you to be on rate control meds such as beta blockers or calcium channel blockers.
(Based on what happened with me)
Hi, while a high HR (over 100) is common with AF it is not always the case. I was in persistent AF for about 6 months before my ablation with an HR of 80-90 bpm.
The symptoms were just as bad, mainly extreme tiredness and breathlessness. I was on a high dose of Flecainide (150mg twice a day) which was stopped as it wasn't working.
Yes I was on that dose for about 8 months, unfortunately the AF broke through anyways after 8 months and I had lasting damage from the Flec.
Having said that, many take it without problems as we all react very differently. I think it’s important for your EP to regularly monitor you with ECG. I used the Kardia and emailed a trace through every couple of months or if I saw something I wanted advice on. Not sure where you are in the world but guessing UK? I would try get ablation sooner or ask to go on a cancellation list - that is often worth it if you are able to respond to an offer at short notice.
what lasting effects did you have from flecainide?I took 300 mg for 13 months, but ended up actually making my rhythm worse on the higher dose.
I started to have acquired long QT which my EP was just keeping an eye on, then I was diagnosed with a muscular neurological condition which was very incapacitating, rate an rhythm drugs were known to worsen the condition, as was GA and sedation - I had 2 ablations within the previous 6 months. Luckily I was AF free after the treatments for the next 3 years. When it returned and gradually became symptomatic again, went straight to Pacemaker.
hi dreamer what lasting damage did you get from flecainide please?
Ive been on it since 2018 and I thought they were wonderful but since 28th December I’ve had bad attack of afib tachycardia. After an echo it was found I had a hole in the heart between the 2 atria (cardiologist said maybe possibly caused through ablation), diastolic dysfunction, pulmonary hypertension, leaking mitral and triscupid valves, fluid overload, heart failure, dilated left atrium. Can’t remember all the other things at the moment. Poor old heart!!!
I’m wondering now if it could be a cause of the flecainide or apixaban?
All the best Pat
You would have to ask your doctor but I wouldn’t worry about the hole in the septum - 20-25% have that and it only causes problems for a tiny minority. Most of the other things you mention sound more as though they are result of AF, Hypertension & leaky valves.
My problems were not connected with anything like that but a very rare autoimmune condition which all heart meds are known to exacerbate.
hi - I’ve been taking 300mg (150mg twice per day) for 10 years and never had any problems. When first diagnosed I was given 50x2 and kept tripping into AF but I’ve been largely episode free since then.
it upset my stomach so I only take one dose of 150 mg if I have an attack which is rare as I have had two ablations. But i know people who have been on it for years without ill effect.”
was that on an empty stomach? If you have food in your stomach it can make you feel terrible for a few hours. I’m
Hi Hannibal, Yes I'm on 150mgs twice a day now for nearly two and a half years. Increased in 2020 from 100mgs twice a day due to getting more breakthrough Afib episodes. It has really helped to keep me out of Afib except for just 2 episodes in the last year. I took extra dose of Flecanide and rested up listening to soothing music (Indian Yogic chanting by Deva Premal) and this really helped as I love her voice! Very hearty music. Not everyone's cup of tea..... Try to be as exact as possible with the timing of taking the Flecanide and take on anemppty stomach and don't eat for at least an hour after taking them keep away from your triggers. My pulse is normally slow anyway. Good luck with this strange journey.
My friend please get off the flec as soon as you can. It can do lasting damage to your heart.
There are a lot of us on flecainide and are using it safely and effectively, comments like yours are totally irresponsible unless you can back them up with sound medical evidence . Groups like this are not the place for scaremongering.
I don't make these statements lightly. If you have seen any of my previous posts I can always back up what I say. I keenly read posts from other members who have taken flecainide and some have them have reported long term heart damage that was confirmed by their cardiologist to have been caused by flec. Its not scaremongering to share accurate knowledge. I'm fully aware that flecainide can be effective in relieving symptoms. That is until it stops working or your heart develops new problems when the flec decides to change its personality! Flec users must always be carefully monitored by the cardiologists but this doesn't always seem to be the case. Problems with flec can show up at any time. Its an unpredicatable drug.
Mike, I'm sorry you had side effects with flecainide. First, it is said to be very important to take a beta blocker if you are taking flec, to avoid certain side effects. And many, many of us take flec as PIP, and find it works very well to convert AF quickly. Also, it's wise if using flec to be monitored regularly by blood tests, to stay on top of changes. I could not have made it through the last 4 yrs of paroxysmal AF without flec PIP, when other drugs failed. Blessings and NSR, Diane S.
what kind of lasting damage?
Where to start? Permanent bradycardia? Long QT syndrome? If you want to know more Google or just search this forum.
because it can does not mean it will. Any drug which can help a condition has the capacity to also cause. It’s not without risk but neither is not treating AF so it’s up to your doctor to assess the balance of risk:benefit and advise accordingly which is why it should only be prescribed by a specialist and carefully monitored.
Such as what please Mike?
where is your evidence of this ?
Hi there,
I've been on this very dose, 150 twice a day since 2013 when I was diagnosed. However just last year I at last saw an E.P. who suggested the Flecainide may actually be instigating episodes for me and suggested I take a break while I wait for a date to have a Radiofrequency Ablation, which is now scheduled for the 14th March....yikes!!
I've plodded along nicely on the Flec for those years at that same dose and having now been 'off' it for a few months I'm finding I regularly have an episode which lasts longer than before so I'm now more or less using the Flacainde as a PIP and only taking 50 at a time when I feel something starting. (eh, 50mg ...not 50 pills obviously)
Hope all goes well with you!
Stay well
Blue 
Flecainide has been the best drug I've had with the least side effects. I'm now on 150mg twice daily, this has gradually increased over the past 10 years from 50mg twice daily. However having regular break through now, not keen to have Ablation.
I don’t want to be a contrarian, and I know Flecainide is a serious drug, but it has been in use extensively for over a couple decades now and is therefore known to be safe when used correctly. Yes people can get side effects, as with most drugs, and usually side effects do wear off over time. Yes there is the occasional person who cannot tolerate it, but this is not the norm. As you can see from some responses here some people take it for many many years and it can work wonderfully, (and I am one of them also). So it’s not something to be afraid of, just be sure to pay attention and take it consistently and accurately and you have little to fear. If it ends up working for you it can be a God-send, if not then stop taking it, and move on to another option.
what I am more concerned with is your 1 year waiting time for the ablation? Are you certain you have no other options? That is a long time to wait if you do need one, and it might be worth it to really dig into other options…
Well, the answer is probably not.
Here in the UK, we are covered by socialized healthcare through our taxes. I could get an ablation privately for around £20,000 or so I'm told. If it was a life saving procedure and not a quality of life issue, it would be done very quickly and covered by our NHS. As aFib is not life threatening, I have to wait in line...
I was on Flecainide for about 20 years prior to ablation 7 years ago. I was glad to get off it as it was causing AFlutter, a prolonged QRS interval and nerve damage to my feet.
Peter
I hate the stuff it’s really bad for your liver.. why do long for an ablation? Where are you? Are you in anything else? Do you take supplements? Diet exercise?
Here in the UK, we are covered by socialized healthcare through our taxes. If it was a life saving procedure and not a quality of life issue, it would be done very quickly and covered by our NHS. As aFib is not life threatening, I have to wait in line...
As I understand it. Exercise helps with arrhythmias and so I walk regularly but too bloody old now for the Gym!
Although often hard for Fribbers, most, I believe just think "screw it" and carry on...
THANK YOU EVERYONE!
Phew, what a response!
I've certainly got enough to know what fate has got me in to now and I feel much better informed.
My heart scan and electrocardiogram both showed no serious issues and I know AF is not life threatening, so I'll still keep an eye on things and bombarding my primary health carer with data and graphs!
Thanks again👍😜
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