Hello

[Buster53]

Hello 'm new to this forum but not new to AF. I've had Paroxysmal AF for more than 10 years now. I take Flecainide to bring my heart back into rhythm,a pill in the pocket approach. Usually a single 100mg dose is enough but recently I've noticed that I have to take several doses in order to get back to a normal ryhythm. My last episode lasted for several days including a day spent in hospital. Has anyone else had any problems with the efficacy of Flecainide?

[doodle68]

Hell Buster I just wanted to say welcome.

I have P-AF too but have never been prescribed flecainide or any rhythm control drug, I have been lucky enough to get back to SR on my own .

[BobD Volunteer]

It is not the efficacy of flecainide Buster, it is your AF progressing. AF begets AF so the more you have the more you will get. This is quite normal for many people and maybe you need to see your EP and discuss the way forward. By the way your MUST NOT take more than 300mg flecainide in any 24 hour period or it may stop you as well as your AF.

[Bagrat in reply to BobD]

Wot Bob says!!

[lilyj54 in reply to Bagrat]

Yes don’t take more than stated dose it can have dramatic affect.

[Jhcoop55 in reply to BobD]

Bob,

I still don’t understand the PIP approach that many AF sufferers utilize. If AF begets AF, the PIP only treats the symptoms once an AF event occurs, but does not treat before the event occurs (thereby exacerbating this vicious cycle). Assuming that a person with AF can tolorate Flec on a daily regimen with minimal side effects, isn’t that a better approach by preventing the AF event in the first place? If you can prevent or at least minimize the number of events on a premptive basis, isn’t that preferred to treating after the event occurs? I do recognize that over time (years) even a daily regimen may become less effective as AF gets stronger, but it still seems like a better approach than PIP. I’m a daily Flec user and wouldn’t think of only using it as a PIP

I’d be Interested in your thoughts as I don’t understand the utility of the PIP approach.

[BobD Volunteer in reply to Jhcoop55]

Interesting question JH.

It is important to remember that ANY and ALL treatment for AF is only ever about improving quality of life (QOL) . This includes drug and ablation treatment. One should also understand that provided rate is well controlled there is little if any difference in mortality or outcome with rate or rhythm control and this is why most people are started on a beta blocker to control rate. (With anticoagulation for stroke prevention where appropriate.)

Many EPs think that early intervention by ablation is the best treatment but logistics rule that out for all patients as there are just not enough EP centres available to treat all people with AF (over a million in UK alone). Add in the lack of really long term data to prove this the best solution.

We are therefore faced with three options. Treat with rate control drugs, Treat with rhythm control drugs or a combination of both or go the ablation route bearing in mind that this may involve multiple procedures before full control is established.

Now if the patient has regular events on a daily or more than occasional basis then as for yourself daily rhythm control drugs may be tried to see if the AF can be controlled. If the events are mild and well spaced then rather than take a pretty dangerous drug all the time it is better to try and bring any infrequent events under control with PIP whilst taking a rate control drug all the time to protect the heart. We need to balance the risks of taking all drugs with the possible benefits. I have often said that if a drug is not working then don't take it. I know many people on regular flecainide who swear by it but from memory (and it was a long time ago ) it did not suit me as a PIP and I never took it full time.

I hope and pray that one day we will discover the real causes of AF and find a better treatment but for now it is all a bit hit and miss to be honest. Life style changes (weight loss diet etc) seem recently to be having as much success as drugs but such is this mongrel condition that there will always be the vegan, non smoking non drinking stick insect who gets it.

Caveat these are my own personal observations and opinions based on my contact with a great many eminent specialists over the last fifteen or so years.

[Kaioatey in reply to BobD]

Non smoking, non drinking, vegan, stick figure here, can confirm

[Jhcoop55 in reply to BobD]

Thanks Bob. All makes sense. I did go the ablation route twice and while the second one kept my AFIB at bay for 18 months I felt absolutely miserable post ablation with frequent and intense ectopics that ruined my QOL. Since my AFIB event, I’ve been on Flec and metropolis combo (plusPradaxa for piece of mind)- no AFIB, no debilitating ectopics (although I’m sure there are some light ones that I’m not noticing), and better ability to sleep, exercise and stay slim and fit (moderate exercise of course). I agree, that it is a little unnerving to be on a relatively powerful drug for the foreseeable future, but I’m hoping I’m one of the lucky ones that continues to tolerate it with no or minimal side effects along with continued efficacy (along with my regimen of moderate exercise and proper eating). My EP says he has lots of patients that have been on the drug for a long time. The AF journey never ends.......just lots of twists and turns. Thanks for your thoughtful response.

[Hidden in reply to Jhcoop55]

Your questions Jhcoop55 are good ones, and ongoing discussion with my docs currently. I am going back to pip( my request) after 4 mo of daily flec and heart docs(EP and cardiologist) would prefer me to ablate or do daily flec. My argument is: if I take flec daily and " it works", is it the flec or my heart avoiding the a fib? While on pip, I went 11 mo with no a fib, no meds thena stressful life event occurred and I had 2 back to back events under 12 hours, so they got excited and convinced me to take flec daily. Now Im realizing that asymptomatic a fib can occur that I might not b aware of so Im thinking about getting a linq monitor placed just to see if I am having more a fib than I realize. If I am, then I will b happy to take the flec daily. If Im not, I would rather avoid drugs that can cause other issues and see how I do. I would consider ablation if a fib became a huge issue but right now it isnt. I am making healthy lifestyle changes and hoping that will help me out too.

Feel free to debate this with me as in sept Imseeing these docs again and we will be cussing and discussing this pip subject.

[Jhcoop55 in reply to Hidden]

Thanks for your response Hoski. Interested to hear what your docs say. My guess is that the choice to go PIP vs daily is dependent upon individual circumstances. As per my response to Bob, my two ablations failed, and my ectopics became worse after my second ablation (although it kept AFIB at bay for 18 months before returning. Now, my ectopics are not noticeable, no swirling feeling in my chests and rhythm and rate control (for now) with no AFIB events. When I got my last AFIB event before going back on Flec and Metropolol, they couldn’t get me back into SR with Flec and I needed to be cardioverted. I may be one of those patients who can tolerate daily Flec well as a preventive Med, but not someone for whom the drug works well as a PiP. Everyone is different.

[Hidden in reply to Jhcoop55]

Yes I agree. Jury is still out on me, lol. I took the flec and metoprolol daily for the last 4 mo and cant say I felt any side effects so if the old ticker decides to throw a fit, and it is back to daily meds, it wont b the end of the universe.

[Hidden]

Sounds like your doc may soon b discussing regular flec dose. I did pip only for 2+ yr , longest time was 11 mo between epidodes. Then a stressful life event popped up and I had two back to back episodes in 3-4 days so that bought me a ticket to daily dose 4 mo ago. Ive been fine and eventually convinced doc to let me go back to just pip and he reluctantly agreed so Im in the " fingers crossed mode". Suprisingly, I had no physical issue with daily flec, first week a little bumpy with feeling weird, mild nausea but that went away. I was also suprised that I have a sense of security taking it every day even though I am opposed to taking it daily if I can sneak by without it. Im sure my doc thinks Im nutty.

[knitted-bunting]

Hi Buster. I have prescription for flecainide but never had to use it yet . I've only had 1 episode of being out of normal rhythm which lasted 6 weeks. Luckily I eventually went back into SR on my own. It's interesting to know how this condition progresses.

[lilyj54]

Flecanide is a tricky drug.

I took it for a while and then it seemed to upset my system and I just felt worse. From what I know docs are not surprised by this.

Perhaps there is something else your doctor or specialist could recommend. I moved from paroxysmal AF to more persistent state also after some years and needed more careful assessment for drugs.

None are perfect but some are liveable with and do the job...Good luck.

[Hidden]

I take 50 mg twice a day and have only had very short episodes whilst on that ! No side effects either a good drug if it suits you ! I know it may stop working at some point but I intend to have an ablation before that happens, just trying build up the courage to take the leap !

Andy

[Hidden]

I was given Flecainide fairly recently as a PIP but as episodes became closer together needed 50 morning and evening plus 100. With this recent heat could really do with 100 morning and evening but that will have to wait until I see EP after our extended holiday

Di

[secondtry]

Hello Buster, you don't say how frequent you AF episodes have been but 2 things spring to mind 1) Does some research here and elsewhere on Lifestyle changes, sooner rather than later 2) My cardiologist, after a pattern of AF emerging, prefers regular daily Flecainide rather than the roller coaster experience for the body of PIP. He started me on 50mgsx2 daily which wasn't enough but the medium dose of 100x2 daily did it. Very best wishes.

[KMRobbo]

I was on Flec 2X 50 mg from July 2017 to may2018 when I stopped following a successful ablation.

I was put on regular flec as my AF episodes had back.d more frequent and longer lasting (af begets af) . My cardiologist said he did not want me on a PIP as from his point of view it is easier to stay out of AF with a maintenance dose rather than trying to get out of AF when you are in it.

The other point is that 100mg as a PIP I think is quite low. I am not a doctor but my EP advised that if I had any problems on going to take initially 200mg and then 100mg 12 hours later if the first dose does not clear it. Max 300mg in 24 hours.

[BJShaf in reply to KMRobbo]

The EP I see says when your in AF all the time it usually takes at least 300 mg daily to convert. Again everyone is different. Currently I was unable to tolerate the 150mg bid, but it did convert me to NSR. Due to horrible SE and had to go down and doses were titrated to get the right mix for my body and not cause all the unwanted effects. I am now on 25 mg. bid and once the higher doses got out of my system I am doing much better and in NSR. EP believes in rate and rhythm control. If you do not have the rate control meds and you should go back into AF with tachycardia it alone can cause atrial flutter of which he reports can be extremely dangerous. NSR along with a rhythm controlled drug is known to cause the bradycardia and so when your also on rate control meds it can put you too low so its working on that balance. Lots of patience and having an EP doc that is really listening to you and being conservative and patient as well. As has been reported on this site every person, every case is completely different so keep a log of daily happenings and your B/P, Pulse because it helps the EP to see what has been going on in between visits. Helps yourself see a pattern which in turns helps you and the EP have better suggestions for treatments.

[Buster53]

Thank you to everyone who has responded to my post. I'm on pip flec as I don't tolerate it very well. A single 50mg dose lays me up for a couple of hours. I've tried other drugs but none worked as well as flec. My cardio is against another ablation as I only suffer AF on average once every two months. Guess I'll just have to get on with it. BTW , I'm aware of the 300mg daily limit but thanks for pointing it out as others may not be. Thanks again everyone.