Successful use-age of flecainide

[Davidv45runner]

Briefly :-I was / have been getting Afib episodes every 3-7 days.

Healthy 44 year old athlete - no other known issues at all .

No requirement for blood thinners - chard=0.

Have started taking Flecainide 50mg twice daily since last Friday ( today is the 5th day ).

Last Afib episode was the Thursday( one day before starting on Flec ).

No side effects yet ,though I guess it’s early days...

So my question is :-

How many on here have successfully used this drug ?

I would guess most on here use this forum as they have this AF problem / related problems / and still use it because they still have the same problem ( also because they want to help others and have maybe made friends here ).... yet ,for some , I guess once the problem is treated successfully , they won’t hang about on this forum .... so any poll or question like mine is likely to show more weight toward the more negative side of AF/ Flec etc ...

I noted a comment someone made to me a few weeks ago , that athletes etc don’t hang about on here as they probably find their own forums etc ...perhaps it might be because their treatment is working for them ?

What I really want to know are success rates for others in similar circumstances to myself .... does anyone have links to data / studies that show success rates for various groups / drug useage / ablation etc...

[BobD Volunteer]

The most important thing to understand about AF is that any and all treatment is only for symptom control and therefore quality of life.(QOL) . Also changes in life style have been shown to have just as much a benficial affect in many cases as drug therapies.

Drug therapy often works but since we are all individual there is never going to be a best fit for everybody. I know many people here who have been on flecainide for years and are happy with their lives whilst others were badly affected by it and would never take it again. Horses for courses I'm afraid.

[Davidv45runner in reply to BobD]

Thanks BobD,

Right now I’d take being on flecainide long term if the episodes completely stopped .

At this moment I’m now 5 nights free - if I get to 7 nights free, I shall have a virtual glass of bubbly😀

[Angie06]

Hi, I had my first AF episode about 12yrs ago and started on 50mgsx2 daily with no subsequent attacks although occasionally have periods of ectopics that can last for a few months . I've never been advised to come off it and dont really want to rock the boat as all seems good at the moment and will hopefully remain that way. 😀

[Davidv45runner in reply to Angie06]

Hi Angie,

Thanks for that .

That’s what I’m thinking is likely to be my best outcome.... ( that the drug will stop the episodes but I will have to remain on it for the foreseeable ).

Here is my poorly informed rather hopeful scenario I’d like someone to pick holes in or comment on ....

Over time, Afib episodes increased in frequency ( like many others on here ) and I felt I had fallen into quicksand with every manoeuvre only making it worse , whilst still slowly sinking...

So are the drugs only to stop you sinking further in the quicksand, or is it possible by taking flecainide etc you can reach out and grab that tiny branch ( fortunately just within reach) and ever so slowly pull yourself back out of the gloop ....

Given that - —-the heart is a muscle and possibly gets used to beating incorrectly ( re modelling ) so therefore ( Afib begats Afib ).... but if it can get used to beating normally again over a prolonged period ( thus re modelling again to the point where having NO Afib begats having no Afib ).

Or does that branch of hope only come from the Ablation tree ??

[BobD Volunteer in reply to Davidv45runner]

Interesting thoughts but you seem to have missed the point that any and all treatment is only for QOL.

Unless you are a young idiot who binged drank their way to a first AF event and subsequently learned the error of their ways nothing really is a cure.

It is interesting that professional athletes who develop AF and on retiring at a suitable age, de train properly, often find the AF terminates but for most people who develop it, it remains lurking waiting for that slip in life style that will kick it off again.

Ablation can be beneficial for quite long periods (I had three ablations before my AF was eliminated 11 years ago) but the heart is a fickle thing and often other arrhythmias intrude along the way.

For an older person drugs may well be the way forward to control heart rate (there is no difference in outcome betwen rate and rhythm control) but for somebody your age to be on powerful drugs for maybe 40 or 50 years is not such a good idea especially when the natural progression of AF will eventually mean that it is likely that doses are increased to the point that they no longer help.

The evidence which I have seen over many years is that we all need to look inward to ourselves and change what seems likely to be exacerbating our condition , be it stress, alcohol, and yes even too much exercise so that we have the very best chance of a good result in our treatment.

[Davidv45runner in reply to BobD]

I did binge heavily in my early 20s - possibly like a lot of others .

Maybe I caused irreversible damage way back then ..

It wasn’t until I was 34 that I started the road to fitness .

By the time I was 40 I was into triathlons and rapidly improving / learning a lot .

Perhaps I just started too late and my heart - being a muscle expanded too much at an age where it would have been better to do so at a much younger age ....

Who knows .

For now I just need to limit the episodes so the drugs for me are the only option .

Given other success stories regarding taking this drug , I am hopeful that within maybe 10 years treatments will have advanced further - better understanding etc

[Hidden]

Been on it for 2 years (I'm 54), it works fine most of the time. As you're an athlete I would take a look at Dr John Mandrola's website which has some useful info

Lifestyle is probably more important than drugs overall especially over time, weight is key as well

Andy

[Davidv45runner in reply to Hidden]

Hi Andy ,

My lifestyle / weight etc are all very good so I have little room to find additional changes that may benefit .

I will look at the website and it’s good to hear that it works well for you .

I think too often we may only see the downsides ( although it’s good to see what they are and how people deal with them ) , but I do think we need to counter this more with all / as many of the success stories.

[Hidden in reply to Davidv45runner]

Hi David

Yes it's a good site he has alot to say about exercise and AF, which is surprisingly common in middle aged guys who hit the exercise hard. I used to do alot of extreme(ish) stuff high intensity classes, plus bodyweight training (probably too much) so switched to moderate stuff and yoga. In my head when i walked in the gym i just did what i did age 25, bad idea really. But flecainde can work well, other key things i think are stress and poor sleep they can be big triggers!

Andy

[secondtry]

I have taken 200mgs Flecainide for 6 years with no side effects.

Two points: the drug is important because it can stop the problem quickly nb the more episodes you have the more you are likely to have. Secondly, the drug buys time for you to work on your lifestyle, which takes longer to have a beneficial effect but which in the long term is much more important.

I suggest you take a few months break from your athletics training and review any supplements you might be taking and others (e.g. Mg Taurate & CoQ10) you should be taking. You will soon find out if this makes a difference...its a process of trial and error. If changes don't work you will probably be offered an ablation & that's a separate consideration. Good luck.

[Davidv45runner in reply to secondtry]

Thanks for that .

That’s good to see no side effects for six years on a dose 4 times as strong as my / the starting dose of 50mg.

Training much less (50-75% less ) and no high intensity stuff .

Keep my HR at or under 130 bpm now .

Thinking of competitive walking now

Not ready for scrabble club just yet .

[secondtry in reply to Davidv45runner]

Sounds all good, I found it was the 'sprinting' exertion whether on the track, tennis court or bike was a trigger. I do daily Nordic walking on a rural track now - its simple low tech & beneficial for all round health not just AF. I remain determined to turn the 'AF monster' into an advantage wherever I can!

[Treffynnon]

David, I’ve been taking flec for 8 years and it keeps me mainly AF free, I get the occasional breakout but episodes are short lived. I used to be athlete-fit but had to give up intensive training as it just caused AF bouts. Now as I creak out of bed in the morning I just remember that stiffness and lower overall fitness is way better than being in permanent AF as I was for 5 months pre cardioversion and flecainide. I also gave up alcohol as my much loved red wine was a trigger! As others have said flec can be an important way of reducing episodes as the more AF you have the more you get. Good luck with your journey.

Steve

[Davidv45runner in reply to Treffynnon]

Good it works for you Steve .

I don’t really have much room for manoeuvre regarding lifestyle changes as I was already doing as best as I could .

My only vice was a piece of cake or a chocolate milk shake — hardcore stuff

Though my sleep has always been average at very best / mainly poor .

That’s one thing I have never fully managed to achieve very well is a great sleep pattern.

Like you I think I could easily handle the occasional outbreak but not twice a week .

[secondtry in reply to Davidv45runner]

Sleep is an important one - two tips reduce stress and try Breatheright nasal strips. It is important to acknowledge the possibility of stress, which is increased when you have had an AF diagnosis. I didn't sleep well for years and thought I never would but then slowly the lifestyle changes bore fruit and I am back to 'good' in the last 6 months.

[sailaway51]

69 and been taking flec (50mg twice a day) for four years. I exercise but I would not call myself an elite athlete. Works for me. Takes a couple days to use to.

I also take magnesium and others recommend it as well. Good Luck

[Davidv45runner in reply to sailaway51]

I have / was taking magnesium supplements so will be continuing that .

That’s good to hear it works for you .

I like to see more successful reports purely for some sort of balance on a forum like this .

[sailaway51]

I have friend my age and we've run/ biked/ swam now walk together and he treats his with just magnesium. I had to have flec and lifestyle changes.