Would really welcome your experiences and thoughts?
Can anyone share experiences with Fle... - Atrial Fibrillati...
Can anyone share experiences with Flecanide as 'Pill in the Pocket' to ward off or treat an AF episode to stop it getting persistent ?
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Turquoise19
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Not sure what you know about Flecainide but it’s a drug which needs to be prescribed by a consultant because it is not suitable for everyone. It doesn’t always happen, but it’s recommended that the first dose is administered in a medical setting and that the patient is monitored to ensure that there is no adverse affects as it can cause arrhythmias other than AF. Dosing is important and no more than 300 mgs should be taken within any 24 hour period. If it’s taken as a daily maintenance dose, the patient should also take either a beta blocker or calcium channel blocker on a daily basis. For many, it is a very effective drug but for others, it can have serious side effects. It is quite a potent drug. When used as a PiP, most are asked to take the maximum dose within 20 mins of the episode starting and NSR can return at anytime but generally it’s within hours rather than days……. Ought to add I’m not medically trained so it’s important to only follow the instructions from your Doctor……
Turquoise19 in reply to
Thanks very much Flapjack. Yes I am just asking to pep myself up for asking my consultant . I am back in persistent AF now x1 month, cardioversion next Friday.
So just hoping this may add to my toolkit . Previously I always reverted just with betablockers. Long wait for a 2nd ablation. But I am so Limited, when in AF . I am usually a very active person.
Do you use it as a Pill in the Pocket?
in reply to Turquoise19
Yes but touch wood, my episodes are few and far between, only one this year. Since my last ablation in 2018, I normally revert within 30 mins of taking the dose…..
Sorry to hear it didn't work for you John. How are you managing instead ?
I have taken flecainide for many years, very successfully, initially as a daily dose of 100mg twice a day initiated in a hospital setting having been cardioverted from extremely fast afib and SVT of 280 beats per minute by flecainide administered intravenously alongside intravenous morphine to counteract the excruciating chest pain accompanying the arrhythmia.
Eventually when i had been stable on this dose for a couple of years and moving to one of the top electrophysiologists in the country he switched me to flecainide Pill in the Pocket.
His instructions were extremely clear and concise which i precis from his follow up letter. This said:
A 100mg dose of flecainide to be taken at the onset of what i recognised as afib or svt. If normal sinus rhythm had not been established within an hour then to take another 100mg. A further dose of 100mg could be taken if needed but no more for a further 24 hour period therefore 300mg max in a 24 hour period. If there is chest pain or faintness then hospital treatment should be sought. All of this presupposes i am taking a regular daily beta blocker as flecainide is not recommended without a beta blocker being taken in tandem.
I have followed his instructions to the letter and found it an extremely effective quick acting drug for me. It doesn't suit everyone but if it does it can be an excellent drug. My understanding is that it can only be taken by people with a structurally normal heart. Hope this helps. I have no medical training and can only explain my experience of flecainide using this drug myself.
in reply to meadfoot
Hello Meadfoot,, whenever Flecainide has been discussed at our Support Group meetings, every Consultant who has spoken has said that beta blockers/calcium channel blockers are required when Flecainide is used as a regular daily maintenance dose but that it is not normally necessary if taken occasionally as a PiP. Of course, everyone must follow the advice of their own doctor. As you say, most would tend to be on this medication anyway.
The reason why they say that it is generally better to take the maximum dose of 300mg in one go is that it almost replicates the impact of having a CV but again, everyone must follow the instructions of their doctor. There can be many reasons why doses need to be personalised……
engvey00 in reply to
I was on Flecanide 50 Mg twice a day. Had several long lasting episodes. Did not appear to do anything for me. Tryed PIP but did not help.
in reply to engvey00
Sadly it doesn’t work for everyone. I hope you manage to keep your ticker operating within acceptable limits, as although symptoms obviously can be troublesome, AF should not impact on morbidity…….
Turquoise19 in reply to
Thats a helpful added point Flapjack, if Flecanide 300mg can mirror a cardioversion. I have my 2nd cardioversion this Friday coming, after being back persistent now for a month. Ablation 2yrs 3 maths ago. Am a bit anxious about falling back into AF soon after cardioversion.
Anxious for a back up plan before the long wait for another ablation. Que sera sera
Very helpful Meadfoot. Thank you! I have enlarged atria, but structurally normal I think?. The junior Dr mentioned this, as an option at my last review, but I was doing well then.Waiting to speak to consultant in early Nov.
I had it as a pip only rather than take beta blockers. I took 300mgs in hospital the 1st time. It stopped my heart for a few seconds( which was rather frightening at the time ) and then reverted me to N.S.R. The 2nd time l was in A.F. l took 100mg which did work but took all night ( The 300mg worked within minutes ). So on the 3rd time l took 150 mg which didn't work at all. So after that l was put on daily beta blockers which made me very ill and every other medication that was tried. In retrospect l wish l had continued to take 300mg of flecanide as a pip. I felt perfectly well after that.
So why did you stop the Fleacanide PIP Doll ? How are you doing now ?
I flatlined after taking 300mg of flecanide. It frightened me. I didn't realise that that is how it worked , by stopping the heart and rebbooting it to go into N.S.R. The doctors don't tell you anything. I think they prefer you to take a daily beta blocker. Taking less than 300mg as a pip didn't work for me. I hope that helps you . Good Luck.
I was on 50mg Flecainide 2 x day and used another 50mg as a PIP. It was upped to 75mg 2 x day and I keep 2 - 75 mg as a PIP. Maxing at 300mg/24hrs. Plus 1.25mg Bisoprolol daily to ward of potential serious arythemias and flutters from the Flec. Flecainide can lengthen out the electrical signal going through the heart to the point where the chambers are too out of sync to work. (QT interval). It can happen to a small number of people with the smallest dose. Thus the monitoring for the first dose. I had an IV in me when they gave me my 1st dose. I beleive that's why there is a 300mg daily max. I have been aFib free for a few years now.
QT does not include both chambers. PR interval does.
Can you explain exactly what that means Palpman? What is PR interval in relation to the QT ? Thanks T
P wave on the ECG is the Atrials pulsing. This signal then carries on to pulse the ventricles and is the largest wave called the R wave.This R wave can be broken down to QRS with R being the peak.
These two waves are known as the PR interval.
The T wave is what is known as the repolarization of the electrical system. Akin to cocking a gun for the next shot.
The start of the ventricle pulse at Q to the end of the T wave is the QT duration.
This duration is important as a long duration can be dangerous and can lead to ventricular tachycardia and possibly death.
Long QT syndrome or LQTS is not very common and is normally genetic or drug induced.
I hope my explanation makes sense.
Do you get any other side effects on Fleacanide at this dose jw ?
I had a low grade headache that was barely noticeable for about a year. It got worse if I got tired. I feel less energetic but hey I'm 5 years older so who knows. I like to exercise so anything is better than progressive AFib.
I have just started the Flecainide JW. Do you think you are able to exercise as normal pretty much now and stay on the Flecanide?
Hi T.
The Flec and low dose Bisoprolol side effects haven't had much of a direct impact on exercise but for me I would have to say no it is not the same.
Once you have afib you always have it. I am concerned with what triggers it with short term activity and what chronic activity created the heart condition that opened me up to it in the first place. Will getting away with multiple tough individual exercise events still cause long term problems? I am no expert and I don't think any one has the answer for any particular person.
There are strong links to excessive cardio and atheletic heart sizes and AFib. Try Googling "excessive cardio triggering afib" or similier searches. There are great books out there like: The Haywire Heart: How too much exercise can kill you, and what you can do to protect your heart.
I haven't triggered an AFib event exercising but I changed my attitude. Maybe to a more sensible approach. I warm up more and limit my exercising. Less moguls and more groomers. Shorter rides and less climbing. Also low alcohol, low BMI(22.5) constant moderate exercise like daily long walks with elev gain 300-700ft. My doc said droppimg my weight 20lbs, even though I was the skinny guy in the office and cutting out alcohol may keep me afib free for life (with the drugs). He couldn't address exercise except moderation is best. What does that mean?
Most people who get it aren't getting it due to too much cardio. It is due to the usual poor life style choices. Excessive cardio is being added to the list.
So life isn't over and maybe moderation is better for a long life.
Good luck and never stop researching.
Thanks v much for this extended reply. I am still hoping that another ablation fixes me back on track again. I am now back in persistent. I am still hoping that another ablation can work for me. Exercise, mostly cycling with friends in the country is v important to me. No cycling at all right now, bar going for minor errands.
Have just started 50mg twice daily of the Flecainide yesterday. No impact yet . V anxious for it to work, or they are suggesting Amioderone.
So that is 100mg a day and you can go upto 300. I thought usually they take you into the ER and give you enough to stop the Afib (upto 300mg) and then drop down to a maintenance dose adjusting it until thy find one that keeps you out of afib. Or cardiovert you some other way. I might look for another Dr.
Seems they are doing it the other way round though not sure why like you say. They prefer the electric shock cardioversion. Maybe seeing how I tolerate it, sob it will support post next shock cardioversion.
I think I do trust them. It's St Thomas's and I have a v well thought of consultant.
But yes, would just rather be back in NSR and now!
Increasing the dose from next week
I take 100 x2 daily of Flecainide which leaves me 100 in hand to take as PIP. My EP suggested I could go to 150x2 but as that would leave without wiggle room I have resisted it as yet.
My episodes seem to come in runs, but mainly the Flecainide keeps them under control.
Have you ever been persistent Hylda ?
I used to have 2 days on and one day off, but as I can be in AF with a heart rate of 75! EP was convinced I would become persistent but Flecainide stopped it entirely for 8 months. Now I get short runs, maybe even two episodes in a day. Then it disappears for a few weeks again.
Thanks Hylda, I am starting the Flecainide now on 50mg BD. Not noticing any changes yet. I am still in persistent AF. Plan is to Increase it next week, then probs an electric /defib cardioversion in Nov.
So after that, maybe it will stabilise. Do hope so!
The general theme here is that Flecainide is effective as a PiP for some of us so long as it's taken with something that helps to block the AV node - that's either Beta Blockers or Calcium channel blockers. If you don't have these also there's a danger of triggering Atrial Flutter. I'm on Flecainide X2 a day plus Diltiazem and I much preferred it to the Beta Blocker I was first given.
Would you mind explaining the actions of the AV node Singwell and how that works ? Thanks v much T
Not a medic obvs but was told this re importance of AV node regulation by my EP. here's what I found on Google which looks quite good: The AV node, which controls the heart rate, is one of the major elements in the cardiac conduction system. The AV node serves as an electrical relay station, slowing the electrical current sent by the sinoatrial (SA) node before the signal is permitted to pass down through to the ventricles.
I get an AF episode roughly every 10 days and use Flecainide as a PiP. I take it within 30 minutes of an episode starting, along with a bisoprolol tablet, I only use that as a PiP too, with the agreement of my EP. I can revert anything between 1hr and 4hrs, once it took a lot longer and I had to revert to taking a further 100ml. I have had a cryo ablation which didn't work for me and am on the waiting list for an RF ablation.
This is interesting Cally. Have you ever been Persistent?
No, never been classified as persistent, only paroxysmal.
Wife was told any form of PiP wouldn't work for her based on her last stay in hospital where attempts at both electrical and medical cardioversions failed. When told she was being discharged with permanent AF the shock was enough to put her back in NSR 
Well that is incredible Devon. I have had a fair few shocks recently in my personal life and think that it's the shock of these that has put me back in AF ! How's your wife doing now ?
Wife's AF is generally well behaved. As she was discharged with permanent AF her meds were out of kilter. Digoxin was removed at 3 month post discharge review. Bisoprolol has been adjusted multiple times to balance between low HR and more AF episodes. Currently on 2.5mg and no recent episodes.
I was originally prescribed 50mg x 2 a day and 1.25mg bisoprolol. I spoke to my GP as my episodes were so few and far between (2-3 times a year) he was in complete agreement about using flecainide as a PiP. I take 200mg flecainide and 1.25mg bisoprolol immediately I have an episode and am usually back in NSR within the hour.
That sounds good Irene! How many times have you needed to do this ? If you don't mind my asking ? Roughly? And over what timescale ? Are you otherwise living a normal life ?
I have another health problem to contend with now, which has affected my AF, but for four years until spring this year I would use the PiP two or three times a year and it was very effective. And my life was completely normal, having AF didn't bother me at all, I had a treatment that was very effective, and I was also happy with taking two/three doses a year instead of daily!
Anyone take Flecainide along with Paxil (Paroxetine)? It's an anti-anxiety drug. If so, have you ever had problems using Flecainide as a PIP in conjunction? I take 15 mg of Paroextine a day. Thank you for any, and all responses!
I ran it past the MedScape Interaction Checker and it came up with 2 cautions.
//Paroxetine can cause the buildup of Flecainide in the blood plasma.
Paroxetine can increase the effect of Flecainide.
Both can be taken together but QT interval must be monitored.//
That said. I was on both for 18 months and had a slight buildup of Flecainide. My QTc interval increased to 477ms which is just above normal. Although this is not quite LQTS it must be monitored.
Since stopping Flecainide my QTc is back to normal.
My Surrey cardiologist did not favour my request for PIP Fleacainide, he said (after I had 9 episodes in 6 weeks) that it would be too much of a 'roller coaster' for my heart and a steady dose would be advisable. Consequently, I have been on 200mgs/day for 7 years with no problems. He also said, unusually, due to my HR in the 50's & my BP 110/65 that any accompanying BB or CB 'would make me feel unwell'. I am 68 now and active, no other co-morbidities.
Thats amazing Secondtry! Wish my BP was as good as yours, though my non AF HR is usually in the 50's. What do you think triggers your AF.
High BP for me I think, as main cause..
Stress/anxiety is the main contributor but also some poor lifestyle choices all went to tipping me over the edge.
Hi I have had af for about 2 years. I tried flecainide at the beginning, for about a year, but found it had no effect. Now I just take a blood thinner everyday and ride out any af episodes. Not sure if this is the best way to manage af, but it is difficult chasing up medical services all the time. Beta Blockers make me faint.
So how long do your episodes last Hilianna?
Can be a few hours or shorter. I tend to have the shorter ones most days. I have a tendency these days to feel my heart leaping around but my heart rate is lowish, not over a hundred. The bigger ones where my heart goes up to 160'sh do not happen so often as they used to when the a fib started. Do not know if this is a common pattern or no. My biggest problem, which the cardiologist does not think is a fib related, is terrible fatigue. However there is nothing else really wrong with me. A puzzle.
Hello Turquoise. This NHS page lists numerous medications to control AFib. You may find it useful. All the best.rbht.nhs.uk/our-services/at...
Flecainide had a bad report years ago when first tested. It has since been improved but the bad rap remains although it is totally safe.
It is no necessary to initiate it in a hospital setting unless taken as a "soft" Cardioversion for the first time.
I recently received the above information from Academia.org.
I was not on any BB or calcium channel blocker but only on Flecainide. It totally stopped my AFlutter.
It is not safe for everyone.
That's good to hear Palpman, what do you mean by 'soft' cardioversion? Did you get any side effects from it ? PiP or daily meds?
Soft Cardioversion is when antiarrhythmic drugs like Flecainide is given intravenously. Normally electrical or chemical Cardioversion is done that either shocks the heart into submission or stops it momentarily.
I had no side effects from it.
I took Flecanide for a while, it stopped the AF episode I was in but I had many more episodes in a day because of it. I believe this is one of the problems for some people.
Golly that doesn't sound great geepo. How did that get resolved ?
I took bisoprolol and dronederone , then had an ablation and came off the dronederone , been fairly good so far, AF only lasts an hour or so, not days as it did before. Stopped using fluoride and anything with ethanol in and things are a lot better. Flecanide just wasn’t for me. If it works for you ‘ the pill in the pocket ‘ is brilliant.
Thanks Geepo, here's hoping it will. If needed.
My EP relented with Flecainide PiP after I complained for years of incessant PAC's/PVC's. Unfortunately it didn't do a lot for that condition, but when I had my first proper Afib attack I was lucky enough to be able to take the Flec that was already on hand. I converted 2 hours later after demonstrating on ECG but before the ER doc could call me back. How rare/cool is that? To be prepared with vetted PiP for your first episode!
This kicked off 3 years with 14 fib episodes....Half of them were stopped cold in their tracks within 1-2 hours with PiP. The other half spontaneously converted before I could even take the pill. It was a wonderful strategy. It allowed me the confidence to travel at will and to 'wait and see' if I might convert before downing the pill.
Though at this point I'm hoping PVI Ablation last Wednesday will be successful, but I am spending recovery with the same ol' Flecainide and Atenolol PiP.
As has been mentioned, I do not have to take beta blocker before or after given no structural defects. Though I will say the last few PiP conversions were followed by nasty Bigeminal PVC's. Pick your poison I suppose.
What are biennial PVC's ?
A PVC morphology every other beat = One normal beat, one PVC, repeat. There are Bigeminal PAC's as well. (Atrial beats). A similar designation is TriGeminy = 2 normal, 1 ectopic.
Thanks for that
Flecainide was awful for me, left me housebound. Showing heartblock at an emergency appt with cardio. Had to go back to sotalol despite all the side effects I was suffering. But fortunately, have not had to take anything since my successful ablation in 2009! Good luck.
That is a grand success Bonnie, do you feel as fit as you want to be now ?
I felt I got my life back. Not the heart I had at 40 of course, i get the odd thump and flutter - ectopics - when stressed mostly, but I consider myself 95% cured.
Brilliant Bonnie, hope I'll get there. Thobthink I probs need a second ablation when I can get one!
I take Bisoprolol 5mg twice per day. If my heart rate goes high on the app on my phone I just up the Bisoprolol to 5mg when needed. This works for me. I also take digoxin and Entresto to help my heart pump better as I also have heart failure which means my heart does not pump as well as it should 😡😡
I've recently been prescribed a 'smidge' of flecainide (50mg ) to take as and when my heart feels wobbly. My cardiologist was pretty laid back and said I can take as a Pip or twice a day when necessary. Had only a mild night episode that's required a pill and it did its job pretty quickly. I've not been given a beta blocker as my heart rate is low 50s. I am in my mid forties and pretty fit, a regular runner. My AF is definitely vagal and at night with short episodes. I think this may explain my cardiologists laid back view. So far flecainide seems to be helpful but I am trying to avoid regular consumption if I can. I prefer to keep a healthy lifestyle and take magnesium and taurine. Taurine seems to helped quite a bit.
Thx Boyathood. Yes I do the magnesium taurate too. And when not in AF I have an HR in the 50's. I run and cycle.
When you say your AF is vagal do you mean it's stress or physical exersion related ? Interested to hear how you mean ?
It's neither. My AF is triggered when resting and at night. A full stomach and or a few drinks will also add risk to this. During the day I am largely absolutely fine with the occasional cluster of PVC. Exercise, not eating late and supplements keep things pretty smooth- for now.
Golly we are so different. I think it's high BP and stress that's done it for me. Though I am now back in persistent. It kicked out after I had been exercising, a week after an operation for something else
I had an ablation in 2018 and haven’t had any episodes since. Before that I took PIP. At the onset of an episode I’d take 150 flecanide 20 of Zarelto and metoprolol. I would revert to NSR within 1-2 hours. I hope it works for you
Thanks Gwelos, yes will discuss with my EP
I take PIPs of Flecainide and a beta blocker - was Bisoprolol and now using Nebivolol. I take 2.5mg Nebivolol plus 300mg Flecainide and this has always stopped my AF within 2-3 hours. Unfortunately since having an ablation, the AF episodes are worse and can take 5-6 hours to stop, but at least they do end.
Why do you think your episodes are worse since the ablation Kath ?
Because they happen more often and last longer.
Sure, so what's the opinion of the EP as to how come that happened. Do they have any ideas?
AF can worsen after ablation, especially after the first one. I'm still in the blanking period so this change might be temporary. I will see the EP in January 2022, 6 months post ablation.
Yes do hope yours settles after the blanking period. I thought this was just 3 months. Is it longer for 2nd ablation?
It's usually 3-6 months but can last longer. I don't think it matters how many ablations you've had.
Good to know Thanks Kath. Hopefully all will settle for you soon!
I have not had a good experience with Flecainide and have stopped taking it after7 weeks. It is reassuring to read there are others for whom it did not work .
The first week at 50mg twice daily I had a headache and nausea,
My 2 weekly episodes of P-AF did not stop but increased in frequency and length for 10 hours to 20.
I twice tried taking extra dose as a PIP at the start of an episode, 150mg but it didn't help .
The only difference I noticed was a HR of 125 instead of my usual 148 during an episode but I felt just as bad.
I usually feel ok between episode but when taking Flecainide I felt unwell all the time with hot sweats, breathlessness and extreme tiredness. I also had balance problems, I tried walking heel to toe and couldn't and my tinnitus went from a buzzing to a roar.
I feel so much better since I stopped taking it 10days ago and this afternoon I was able to dig in the garden without being breathless, sweaty and exhausted.
I am just taking Nebivolol and Apixaban now.
Sorry to hear it caused you so much trouble Doodle
I had PAF for 5 years and was on PIP. Upon onset of AF I took 50 mg metoprolol and then a half-hour later 300 mg Flecainide. My AF episodes averaged one every month or two, and the PIP routine worked every time to return me to NSR within about three hours.Here’s the thing though—Flecainide is a very strong drug with a relatively long half life. Every time I used it, I returned to NSR—but felt absolutely horrible otherwise for 2-3 days after. I hated it and at the same time had to take it to reduce stroke potential. When my episodes got more frequent (every 1-2 weeks) it was the awful, nearly continuous med hangover that pushed my decision for an ablation. I couldn’t handle the nearly daily exhaustion and nausea. Flecainide works great to get you back to NSR but it is the worst for after-effects at the PiP dose of 300 mg. Once a month episodes with Flecainide PIP is tolerable, but once a week popping that med is no way to live. Good luck mate.
Thx for the warning SSS! Have to see how I go from here. They're giving me a Defib cardioversion shock first. Then maybe my EP might consider the PIP. Been in AF for over a month now. Managed on bisoprolol. Don't want that again.
TracyAdminPartner
Our online patient booklet 'Treatment Options for A F' and factsheets will provide information about 'Pill in the Pocket' treatment option and flecainide. Visit our Patient Resources page for further information, you may also wish to to register for our "on demand" HRC2021 A F Association Patients Day that offers many presentations about the different treatment options to treat AF heartrhythmalliance.org/afa...
Thanks Tracy do you know which presentations in particular focus on the PIP among others ?
The 'Treatment/Thera'py - Asssessing Appropriate Treatment Options' session offers advice on all treatment options. To view the agenda please follow the link : heartrhythmcongress.org/pro...
Hi. I took flecanide but came off it as it caused skin irritations. Stopped the palpitations though.
I had my first Afib six years ago, then it was two years until the second one, and had cardioversion after that one. One year later had another was given another cardioversion.The doctor wanted me to take meds for it but since the Afib is so far apart I refused and he suggested I try the pill in the pocket. The next time I had an Afib episode I was given the pill in the pocket in the hospital. It worked great and have taken it twice since and it worked in less than three hours both times. I take one Diltiazem HCL 60 mg, wait 30 minutes then take two Flecainide 150 mg tablets. I'm very pleased with
Thanks Ronjer. Is Dilazem a beta blocker ?
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