Some say that Flecainide, after a time, quits working. If that is so, WHY might it be so? Could there be anything done to prevent its not working?
Why might Flecainide quit working? - Atrial Fibrillati...
Why might Flecainide quit working?
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Pommerania78
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For me it wasn't so much that Flecainide didn't work anymore, it was was the fact that it started causing more problems than helping.
Jean
Why do you think that was the case? Thanks.
Because any substance that affects a ‘cure’ also has capacity to cause. Flec caused other more serious Arrythmias for me - after AF broke though anyway.
Same here ....after 7 years on it my EKG was showing what's called Brugada phenomenon, a very serious and potentially life threatening arrhythmia
Why do you think that happened?
While these drug are used as anti- arrhythmic, they are also arrhythmigenic as well...ie have mechanistic capacity to induce arrhythmias.
And that's the reason why I will never take flecainide. It is a Jekyll & Hyde drug with the potential to cause life threatening and irreversible arrhythmias. As patients we can't just think about short term relief. We need to think about long term consequences. You only get one heart so can't really afford to take chances.
If not flec., what do you do?
Consultation with your GP or cardiologist( EP) is best to discuss and sort out your options in your own particular case
That's the million dollar question. I'm inclined to agree with Aegean56 but its so important to find a specialist who understands your condition and is fully up to date with all the latest developments so that they can suggest the best treatment options. Follow up too is so important. On this forum I have read of many patients who now have problems after years of using flecainide. That's likely because they were not regularly monitored. Anyone taking this drug should be regularly monitored but that does not always happen.
How do you find anyone that can be trusted these days? One has to do their own reading and digging and being their own advocate.
Monitored for what exactly? Flecainide is a well tolerated medicine if you have a healthy heart, I read 100s of reviews from patients all over the world and the positives over the negatives was overwhelming, the worse and most toxic medicine I would avoid is Amiodarone my EP even advised me not to take it especially at a young age of 50
New arrhythmias arising from its use. I think because it is known to be 'well tolerated' patients using it are probably not monitored as closely as they should be until a problem develops (Brugada, Long QT etc) and by then its too late.
They will only prescribe Flecainide if you have a normal heart anyway, do you actually want them to monitor you 24/7?
I think it is only reasonable to point out that many people have used flecainide for lengthy periods without it causing any health issues. Your comment begins with you stating '...I will never take flecainide.' Then you proceed to tell everyone that it is a 'Jekyll & Hyde' drug, despite having no experience of using it. I'm not sure why you're so keen to put people off taking it, when you've not even tried it?!?
I'm fine with you, or anyone, posting nonsense on these forums. Please, continue to do so - I'm not a fan of moderators nannying forum users. However, I also think forum users should call out BS when they see it.
My friend I don't want to get into an argument with you despite the fact that you blatantly insulted my intelligence by calling my remarks BS. Instead I will try to see things from your perspective. I can only imagine how irritating, annoying or disconcerting it may feel when someone claims that a drug you may have come to depend on is potentially dangerous and could be doing you more harm than good. However, it is what it is. I have have never tried it, I don't need to. I read the comments others make here and do my own research which has led me to conclude that drug can have a split personality.
You are doing it again. You are putting people off a drug that could make a huge difference to their quality of life. Most, if not all, antiarrhythmic drugs come with risks. That said, for many people, whether they are taking flecainide, dronedarone or whatever, the drugs DO work (and for a long time). Why ruin someone's chance of a better life with throwaway, scaremongering remarks like your 'Jekyll & Hyde' comment?!
"You are doing it again"? My friend we are all adults here and can make up our own minds about things. If you have any genuine conviction about the medication you are taking you will not be put off by my remarks. Unless , of course, you have doubts and aren't really sure. I can say what I want. Do your own research and make your own mind up.
By all means, say what you want. I sincerely hope that's what you continue to do. Even if you prefer to promote fear and doubt rather than hope, that's fine too. Anyway, good talk. I wish you well.
"Some say that Flecainide, after a time, quits working"
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That's not a true statement as it stands. Flecainide might stop working. It is not a forgone conclusion.
It's worked for me for a couple of years ( and still does) and I've read it's worked for others for at least 10 years and counting. And yes, there are the cases where it does stop working, which may have many different causes, including a change in the underlying afib as well as your body changing how it metabolizes the drug.
Jim
BobDVolunteer
No. Flecainide does not stop working. Not in the way that say narcotics do.
There are no chemical receptors in our bodies for Flecainide so it is not a case of the body getting used to it. AF is known to be a progressive condition so the more you have the more you will get. Some people are lucky enough to find that this drug keeps then in NSR for a long time. Since AF begets AF it should not progress too much in such cases. IF the AF is poorly controlled though, more and more pathways will form making NSR almost impossible. It is for this reason that many EPs believe that early intervention with ablation stands the best chance of long lasting relief.
Personally, I think that’s a question which is a bit outside our pay grade. All I know is that the effectiveness of rhythm drugs can often reduce over time. Apart from seeing your doctor to explore an increase in your daily dose which is nearly always limited to 300 gms within any 24 hour period or seeking an alternative such as Amiodarone which is generally not recommended for long term use, the options are limited.
Stopping medication from not working is an interesting concept and I look forward to hearing what others say. If you symptoms are troublesome and episodes are increasing in frequency and you live in the UK, the obvious route would be to consider an ablation but you would need to discuss it with an EP (cardiologist who specialises in treating Arrhythmias but that’s unlikely to be a quick process on the NHS so an initial private consultation often pays dividends….
The cardiologist I saw last year looked at the ECG that had just been taken and told me to stop Flec as it was causing atrial flutter with variable AV block with premature ventricular or aberrantly conducted complexes. Left axis deviation. Low voltage QRS. abnormal ECG. I came off of it and went for another ECG before seeing him again and he said it was much better. Results were then: Undetermined rhythm otherwise normal ECG.
Once I stopped taking it I had loads more energy.
I always ask for a copy of each ECG I have.
How come “Undetermined rhythm” I thought you are now in permanent AFib
I am in permanent AF, I was told years ago that my AF beats were coming from an abnormal source. I know no more than that.
Wow really? So what are you on instead now? I’ve been on flecanide 200mg per day for 5 years now so do u think I may have to come off it eventually? I’m allergic to bisoporil.
I take 12.5mg of Metoprolol every morning and 25mg at night.
When I was taking Flecainide alongside Metoprolol I thought it a wonder drug, though I couldn't exert myself too much. I used to mow my back lawn with about 3-4 breaks. After coming off Flecainide I could do it in one go.
We are all so different heart-wise that I don't think we can judge ourselves by what others experience.
I found Bisoprolol an excellent pill for controlling my heart rate but after a few months it started making the lower part of my legs ache, so I had to stop taking it.
Jean
What do you take in place of Flec?
Metoprolol as in post above.
Thank you.
I found that same symptom with Nebivolol. My legs started aching for no reason. I did a little research and found that the studies indicated that wouldn't happen on that drug but recent studies showed that it is a newer side effect. I figured sine the heart is a muscle how can any thing be good for it. I seem to be doing so much better since I stopped worrying about loosing weight and just eating properly rather than low carb and keto and intermittent fasting and all that BS. So many so called gurus are pushing all that stuff including ice bathing and stupid things like that. Anything that stresses the body is not good, I don't care what they say.
I agree that anything that stresses = inflammation = AF. I do limited Intermittent Fasting as that does seem to have good results and it was only when I started, did I lose any weight. Good fresh, home cooked wherever possible food, mainly plant based is the way to go.
How long is your intermittent fasting? Thanks.
What I have learned, that in the short term, it will help. In the long tern it will create problems. What happens when we fast is that stress hormones are released, we don't need that. There are 4 stress hormones, cortisol and adrenaline are two. In my particular case when those start releasing is when my blood sugar starts dropping, which is not good. If this starts happening where I can't get something to raise it up I get into real trouble. Like on a long hike in the middle of nowhere, which has happened. those that don't have this issue, just don't understand. Once you need energy and you don't have enough, the body will start pulling it from organs as well. Since the heart is an organ, bingo. Well meaning family especially, not so much lately but in the past, I would say listen I am hungry I need to eat, my husband would not stop when on a road trip. He just didn't get it. Now when I do anything, I pack food and drink along and I won't hike without a protein bar either. we learn to do what we have to do.
It isn't so much that flec stops working but that,for some people the predisposition to go into AF is too established and new pathways are formed,lessening the effect of the medication. It worked well for me for quite a few years,but I had a lot of extended breakthroughs despite upping to 200 mg a day,with a betablocker to control the Flutter caused by taking Fkecanide alone.
I went down the ablation route 2022 and so far so good. I am hoping to come off meds in a few months.
I did the lifestyle changes,which can only have helped.
Thank you. How many years did you take Flec?
Started as a pill in the pocket 2014 then gradually up to 200mg maintenance dose. Still on it. I had a couple of AF episodes after ablation and at my 6 month review was told to carry on to retrain the heart into nsr.No flutter at all since and seems the AF is quiet. X
What kind of lifestyle modifications did you do?
I was under immense pressure at the time ,with 2 sets of very poorly parents and in laws, in different towns. I worked as a community teacher,driving about the county. My stess levels hit the roof when my mum died ( from an AF stroke) I was running on empty and began to experience mire if what I thought were caffeine induced palpitations.
I contracted norovirus and was diagnosed .
I was both scared and angry when I did some research and realised how badly supported Mum was.
So I read and read,joined this fantastic community.
Began trying to reduce stress levels,cut out all additives,not easy.No sugar substitutes, more focus on wholefoods, grow lits of my own fruit and veg now with one of my sons at an allotment.
Reduced vastly alcohol.
Went back to swimming,the only exercise I can do!
Found out I have a bicuspid aortic valve too, so that's a kind of bonus having the AF and general heart investigations,as would not have known otherwise. Now monitored.
So AF diagnosis comes with anxiety sorrow,BUT also hidden positives.
I'm much healthier generally than 10 years ago!
Thanks very much for your comments. What is norovirus?
A serious GT (stomach bug) infection causing vomiting and diarrhoea.
For it wasn't down to new pathways, it was that the flec was actually causing arrythmias after about 2 years of use.
what kind of lifestyle changes did you do?
No additives,no artificial sweetener especially. Less alcohol,only organic ,no caffeine.Swimming again
Taking more time out for me.
Quitting my very stressful job( not.always possible of course)
Taking on an allotment with one of my sons growing veggies and fruits
I've taken 200mgs Flecainide for over 10 years coupled with many healthier lifestyle choices. Over that time I have had just two AF episodes less than an hour each. My health generally is much better now.
However, I have recently started having pre-AF feelings when going for my regular afternoon walk, which is of concern so have stopped those walks but still do an early morning one with no problems. I will be raising this next week during my annual check-up with my longstanding cardiologist but I doubt I will get a solution as medics shy away from speculation.
🤞Flecainide will remain effective.
What are "pre-AF feelings"? What were your healthier lifestyle choices?
Difficult to describe but if you are aware of AF, you will also be aware of pre-AF feelings or maybe the start of some type of flutter - sorry, I am no expert.
Thank you.
I recognise "pre-AF" feelings, for sure and because I do, I can thwart an episode 95% of the time. The symptoms are always noticed at a time of rest. (the alleged vagal AF times). For example, while watching tv in the evening or actually in bed or after sleeping for awhile and "something" wakes me up. In all those situations, my heart rate begins to climb to no reason and I start to feel edgy. It climbs and keeps climbing like from 58 past 85 and that's when I take action. I snap a 5 mg Valium or diazepam in half and take it to counter the adrenalin rush that's taking place and I get up and start vigorously exercising. I go quickly up and down the stairs, walk at a fast pace around the house, jump jacks....in order to get my still NSR rate up to over a 100. My theory is that at rest the SA node in the right atrium is working at its "laziest" and the "bad boys" in the left atrium take this opportunity to take control. Continuing to stay in bed and try to stop AF by deep breathing and relaxing has proven counterproductive whilst jumping out of bed and waking the SA node up has been extremely successfully in my experience. Would love to hear back from anyone who tests this strategy. Write back to my, Racquet Happy New Year everyone.
do you happened to have low blood sugar? its hardly tested for. When my blood sugar starts to drop I get real jittery and I can feel myself caving in. I always bring a protein bar of good quality along with me everywhere I go. If I don't eat often I run out of energy to keep going and stress hormones start getting released, like cortisol and adrenaline which causes my sugar level to go down faster. Without glucose we can't function the body tries hard to keep us from dying. In turn this affects the nervous system and then boom Afib. Doctors dismiss this problem as if it means nothing.
Here in the UK and over 70 yo I always push to have annual blood tests. The annoying thing is they keep changing which ones they do and the ones taken last month did not include blood sugar.
Thanks for your reply, interesting point.
actually just a fasting glucose test won't tell anything. They used to do a 3 hour glucose test that would determine high sugar, well we all have a higher sugar level after eating something real sweet. During the test they give you a real sweet syrup. For people with low sugar issues, it's after the 3 hours when one begins to crash. My whole family on my mother's side had this problem. For some reason too much insulin is released and keeps releasing causing a reaction like a diabetic on too much insulin. Like I said once a person starts producing all the stress hormones when the blood sugar drops, in my opinion and in my cause, it brings on the AF due to the nervous system receiving too many stress hormones. Perhaps being vagal AF, not sure of all the terms. I believe also triggering high BP. it is just recently I have figured this all out.
Bottom line is sugar levels fluctuate all the time but we don't want too high or too low. Both are havoc on the body.
I've been taking 2x50gm flecainide since 2007 when first diagnosed and AF has been kept at bay since then with only 2/3 more episodes to date and has worked well for me with no noticeable side effects or signs of not working for me. Fingers crossed it stays this way 🙏
Did you make any life style changes, such as losing weight?
No I didn't need to lose weight but gave up smoking and cut down alcohol.
I’m inclined to agree with the people below who have had adverse reactions. My adverse reaction was that taking Flecanide elongated my Long QT to such an effect that I had a cardiac arrest while on holiday in Crete at age 43. Quinidine also had the same effect and delayed my Long QT to dangerous intervals. Some people are great on Flecanide but for some people, it has very dangerous consequences…..
Why do you think that is so?
I'm probably an outlier but in my case flec appears to be a trigger for afib. I've been on it over ten years (50 mg bid) and it worked fine until it didn't. My cardiologist increased it to 100mg but if anything the episodes increased. Taking 150 mg was the next step but I just decided to quit altogether. I was back in NSR within a day or so.
I would have occasional episodes and now I'm scheduled for an RF ablation on the 31st. The EP wants me on Eliquis and flec 30 days prior but stopping flec 3 days before the ablation.
I started the flec yesterday am and sure enough afib started before bedtime. I had been in NSR for a few weeks. No question in my mind that it's a trigger. I'm going to advise the EP that I don't want to take it. If he insists I may cancel the ablation.
Good for you
why do you think Flec. acted that way, especially after ten years?
it’s not been confirmed but delaying your Long QT is a known side effect. Long QT was explained kind of like a light switch turning on and off but the lights are staying off for too long which resulted in my cardiac arrest.
I don't know. I can understand if I became tolerant to it but for it to initiate afib as opposed to stopping it is something I don't understand. If it happened just once or twice I would write it off but now it's beyond question. I'm waiting to see what the EP says since I advised him I'm refusing to take it.
I’ve been taking Flecainide for 5 years at 100mg every 8 hours for multifocal PVCs that was ruining my life, The Flec have worked brilliant for me and got rid of 95 % of the PVCs, I no Afib is a different animal that’s very difficult to manage, you have two options first being meds or the second option would be Ablation
Flecainide does not stop working it’s the Afib that progresses which makes it less effective, that’s fact
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