Hi again everyone...well.i have had my appointment last Friday with my electrophysiological at Blackpool cardiac hospital, and to cut a long story short was put on the waiting list for an abaltion which is 12 to 18 months I was told because of backlog ..so was put on flecanide two 50mg doses a day and a 1.25mg of bisoprolol with it...my question is to anyone who is using flecanide , how do you get on with it as I keep reading horror stories of the side effects and how it has made a lot of people really badly whilst on it...I can't take mine yet as I have been diagnosed with an inflamed prostate and am on very strong steroid and antibiotics treatment for next two weeks and have been advised not to.mix the medication if possible...so I'm sat here anxiously concerned about how bad flecanide is to tolerate and use....any advice from users would be great many thanks again
Flecanide worries: Hi again everyone... - Atrial Fibrillati...
Flecanide worries
I was only on it a short while as pill in pocket 300mg if an event occurred. No real problems. Just remember that forums are inhabited for the most part by the people who have problems not the majority who don't.
Bob, I just want to thank you for all your effort and your help is greatly appreciated.
Following my AF ablation procedure in December, I've been on 50mg Flecainide twice daily + 1.25mg Bisoprolol. My resting heart rate gets a little low (around 51bpm) due to the Bisoprolol, but I don't display any symptoms to suggest this is an issue of concern. I've had no side effects with Flecainide.
The combination works fairly well for me. I experience ectopics here and there, including couplets and triplets, but nothing major in over 3 months.
Hi Andy
I've never seen a bad report on Flecainide. For me it's been a wonder drug and the only one that really works. You have been prescribed low doses of both drugs. Just give it a try.
Jean
Hi Andy, I was on Flecainide at one time for a few months without any issues at all. I was taken off them mainly because of a kidney problem I have. From what I have heard, there are only a few people that have had problems so my advice would be not to worry as there is far more chance that you will be OK - it’s good stuff!
If you have Lone PAF and at your age you would be unlucky to have any adverse reaction to Flecainide. You may have read bad stuff and I believe it is best (just in case you have a rare reaction) to start taking it when under medical supervision but it is a comparatively old tried and tested heart drug. It stopped (at 200mgs) my AF 8 years ago, still taking it and no issues since. Your prescription is a low dose and I wouldn't be unduly worried. All the best.
PS re your prostate, once the inflammation has died down, I use Lamberts (in the UK) Prostex which has helped flow and my Naturopath suggested broccoli sprouts as an insurance against cancer.
I have been on 100mg Flecainide twice daily for more than twenty years with no adverse effects.
Flecainide has been around for years and surely the fact that it is still being prescribed means it is a tested and tried drug?
You have probably been worried by a very few reports - and these affect every drug! There are always a few people who are unable to tolerate a certain drug although it is wonderful for the huge majority of people.
I would ignore Dr Google and follow the advice of your doctors.
Hope you feel better soon.
Hi, do you have any breakthrough Afib episodes and how often during being on flacanide for the last 20 yrs, would appreciate your feedback?
Like Jean it has been the wonder drug for me and have been on Flecainide 50mg twice daily for around 17 years with no ill effect. Twice though I felt quite poorly but was when I took a double dose of 100mg and higher dose obviously doesn’t agree with me. You can take up to 300mgs in 24hours but never more to try and stop an Afib attack.
It'll yake a few days to get used to - you might feel a bit dizzy and nauseous - but after that it should settle down. I get on well with it and lots do here. You'll read some saying Flecainide gave me back my life, whereas others couldn't tolerate it. All you can do is try it. My advice - take it away from food 40-60 mins before a meal and drink plenty of water.
I didn't read that at all in Bob's response- simply that people more often post when they have a problem. Especially with meds.
I've been on it for 15 years, first as PIP now regularly. I'm not aware of any adverse reaction. The only disappointment is that it doesn't prevent my bouts of AF entirely and I can still have 4-5 hours of it, despite popping an extra pill ( my standard dose is 2 x 100mg). I hope it works for you but in my experience, it's nothing to fear.
I have also been taking Flecainide but with verapamil for the last 14 years and have had no problem. For a while I was on 150mg a twice a day’ but after an ablation I now take 50mg twice a day for a flutter. It has worked very well for me.
Hi there I waited just over 6 months to see him from my referral by gp..it would have been longer as I wasn't due to see him till May but I phoned his secretary up and explained my episodes were getting more frequent...he gave me a monitor to use for a fortnight in December so he had a track of my afib...he was a really nice fella when I finally got to see him...
Remember that it must be taken on an empty stomach - it can make you feel nauseous if taken within 2 hours of eating - happened to me once when I forgot but other than that, no problems. I was taking 100mgx2 daily but before that I took 300mg as a PIP as my AF episodes were very infrequent at the start of my AF journey.
It kept the AF at bay for about 2 years.
CDreamer,
I haven't read anywhere in the literature where Flecainide should be taken on an empty stomach. All the citations I found say "with or without food". I take it with at least a snack and have never gotten nauseous. That said, we all react to drugs differently.
Jim
One point on this,I took it with food at first,and it was discovered I wasnt absorbing the full dose because of this,so was advised to take after or before a meal.
As I just pointed out to KMRobbo, it may be the English food 😀
Anyway, glad it worked out for you without the food.
Jim
Same here, my Flecainide instructions say, take on an empty stomach or an hour before food.
You may be right about the different food, we tend to eat a healthier breakfast over in the UK. For me it's my own made organic muesli. Never ever would I have a pancake with syrup, or anything fatty. My sister lives with her American husband just outside of Dallas, Texas and has lived in the U.S. for 60 years. They don't have any breakfast at all. When they do eat it's after 3pm and always out somewhere, never at home, unless it's a takeaway. In general we brits still eat three times a day. U.S portions are huge compared to ours.
Jean
My GP advised me and he was very clear on the subject but there is lot of essential to know info ‘not in the literature’ that I have learned, often by unpleasant experience. Bear in mind I was taking 300mg as a PIP.
I certainly agree that not everything is in the literature and furthermore that the literature can often be contradictory and in many cases personal experience trumps all. And not only the literature can contradict, but our doctors as well as is demonstrated here all the time when people post what their doctors tell them.
Curious, you said you were taking Flec as PIP. So lets say you went into afib on a full stomach. Did you wait a couple of hours before trying to convert?
Jim
I took " Actavis" flecainide acetate 2 x50 mg .
Section 3 of the accompanying leaflet " How to take flecainide acetate tablets":
Swallow these tablets WHOLE with water on an EMPTY STOMACHE OR ONE HOUR BEFORE FOOD.
When looking on the Web it does not say this on all leaflets/instructions
Thanks KMRobbo,
You prompted me to look at my own package insert and it said "Take with or without food".
Assuming you're on the older side of the pond (I'm not), all I can surmise is that there might be something about English food that warrants avoiding it when taking certain meds 
But seriously and this brings up another topic. Often citations and package inserts differ as to drug administration. Like I think you said, a quick web search will yield different results. The Mayo Clinic here in the States says "with or without food" and I have no doubt that you found other sites that say the opposite. Doctors can also differ in their instructions.
Using the "take with or without food" instruction, I initially had some stomach issues when I took Flecainide on an empty stomach and read that if that's the case, then take with food. That said, it might have been another med causing the issue that I took at the same time.
Jim
I took it that since its release as Tambocor, something must have happened/ been recognised that caused it to be necessary to put that on the label in the UK. However only once did I get flecainide that was not Actavis, but have not kept the leaflet and can't remember the Brand so I cannot check what that said.
Maybe others in the UK could verify the leaflet on their flecainide?
Mine is made by Ani Pharmaceuticals Inc. whose corporate headquarters are in Minnesota, USA. They also have an office in Ontario. Just says Flecainide Acetate Tablets on the bottle. Don't know if the leaflet I was given was specific to that brand or not. It was given to me by a major drug chain in the U.S.
Jim
google.com/url?sa=t&source=...
Another UK FLECAINIDE leaflet from medicines.org.uk.
Again states empty stomach.
As Bob is the only Volunteer left standing and an original member of the forum, he comes here mainly to support others and does it very well. I agree with Singwell - he is just alerting the poster to the fact that on forums people tend to come with the negatives rather than the positives.
I had a bad reaction to flecainide and I now take digoxin and Bisoprolol while waiting for an ablation on April 4th. I've found that a daily brisk walk makes me feel better, though I was running twice a week until permanent afib in mid December!
The digoxin definitely slowed my rate though I haven't been able to see any effect from the Bisoprolol. I still have longish periods of flutter every day and almost non stop afib.
Those who can tolerate flecainide are lucky. It worked well for me for 3 days but my side effects were intolerable. Fingers crossed that you don't suffer from them!
Would you mind describing what kind of side effects you had on flecainide and at what dose? Also, did you try reducing the dose before quitting?
I'm early in the flecainide game, but I'm finding a very low dose -- 25mg morning and 50mg evening is helping me so far.
Lastly, were you taking flec with a beta blocker? If so, could it be the beta blocker that's giving you the side effects? If that's the case, you could switch to another type of nodal blocker, such as diltazem. That's what I use.
Jim
Hi, what is your heart rate during the permanent Afib and how much does the digoxin slow it? Appreciate your feedback
Currently taking 25mg flec in morning and 50mg evening. Also take 120mg diltiazem er as a nodal blocker. Side effects include mild headaches and feeling a little wired at times, although this could be the diltiazem. Hard to know which as I take them together.
I did not do well on 100mg twice a day, felt drugged and had a couple of irregular ecg's during exercise at that dose including wide QRS. Flecainide had been around for some time, but you should be checked to make sure your heart is structurally sound before starting. Periodic monitoring is recommended especially when going up in dosage. Many take it with a nodal blocker such as a beta blocker or diltiazem for safety reasons, but some don't. I was told to. Beyond my pay grade to say if a nodal blocker is always necessary.
As many have stated, it can be a life changing drug, but for me the verdict is not in yet. Weall react to drugs differently. I tend to be sensitive to drugs in general=
Jim
I took Flecainide at a dose of 150mg twice a day for 10 years, and at a lower dose for the first two years. I was not prescribed a beta blocker, but took an AntiCoagulant. The Flecainide caused no side effects, and reduced my episodes to one or two short (less than 30 minutes) episodes a year. After that 12 years I was found to be in asymptomatic persistent AF, that is 21 years after my first paroxysmal episode. I was told to stop Flecainide, and now only take an AntiCoagulant.
Hi, does asymptomatic persistent Afib mean you have a low heart beat hence you don’t feel the episode? Could u share what is your heart beat during the persistent Afib?
I have accepted that the Persistent AF is now Permanent AF. It is mainly asymptomatic. I don't have episodes; my heart is in permanent AF. At no time does it return to normal sinus rhythm. If I exercise beyond normal limits I can feel the AF, but most of the time I have no symptoms. I don't often check my heart rate but resting heart rate can be, for me, between 65 and 110 bpm. Unless I have an ECG or make a concerted effort to feel my pulse I don't realise I'm in permanent AF, but I am.
Have you considered an ablation to return to nsr? I am currently considering one, I guess you’re probably on anticoagulant to reduce risk of stroke, I am.
I do not consider that my Quality of Life would be improved, now that I am in Asymptomatic Permanent AF, by an Ablation. Experience shows that the success rate of ablations is very low for those who have permanent AF. My AF does not bother me. It's not like Paroxysmal AF. Yes I take my anticoagulant daily. Warfarin is my choice. I have my own test meter, and am not restricted in what food I can eat.
Thanks for sharing
I have been on 3 x 50mg Flecainide a day since 2003. I had a few side effects for the first couple of weeks but I put that down to everyone telling me that I would have side effects and so perhaps I imagined them? It has kept me stable for all these years so I can't knock it.
Do you have any breakthrough episodes while on flecainide? Appreciate your feedback.
Hi Andy I am on 50g Flecainide twice a day and 1.25 Bisoprolol and have had no problems at all in just under a year. I agree with Jeannie its a wonder drug. If it works then you are one of our lucky ones. Wouldn’t hesitate.
Hi again..I've just started my flecanide this morning 50mg so have only had the one tablet so far ...I've felt a few irregular beats but they felt suppressed and didn't last longer than a couple of seconds..can I ask I've read that it takes up to 5 days for the flecanide to start taking full effect ..was this the case for you ? Thanks andy...
Have to add my support here. Bob was merely reiterating something very valid - bear in mind that those for whom it has worked are unlikely to still be here. Bob is a diamond and a wealth of knowledge and we are very lucky indeed to still be getting his opinion.
HiI am in same position as you tef ablation,which was on 18 month wait....just before Covid hit...🙄 So back to square one waiting.
However I have been on various doses of Flecanide and biso with great success.
I'm now on 50mg a.m 150 pm and 1.25 biso to prevent flutter kicking in.( I was wrongly prescribed flecanide alone at another hospital which resulted in flutter )
Honestly I have not noticed any side effects. Biso at a higher dose did not suit as made me v tired.
It works well and apart from few significant breakthroughs,has held AFib n flutter at bay.
I do get blood tests done every six months,often have to remind GP. To check liver function.
I've made lifestyle changes too.
I hope this can reassure you. Xc
Extra to my reply,I started taking flecanide at first with food. No nausea but it was discovered I wasn't absorbing the full dose,advised to take either before or after food. X
I’ve been on flecainide 50mg twice a day for some time now. No problems at all. As you will probably know, it’s an anti arrhythmia drug. It keeps my pulse regular apart from the occasional blip. Don’t worry, you’ll be fine on it.
I've been on flecainide 50mgs twice a day and bisoprolol 1.25mgs once a day and touch wood no side effects at all.
However over the last three/four weeks I've had a LOT of stress with my husband ill and arranging three parties for his 80th (family/cousins/friends) and trying to cope with everything in the house, garden, household admin alone as he also has mild dementia so i've had for the first time since Christmas before last a few acrobats with my heart, but thanks to the flecainide and bisoprolol it was nowhere near as bad as pre flecainide/bisoprolol.
Good luck I personally think it is good although I appreciate a lot of people say it can cause different arrhythmia. I'm guessing that the people who write on here are asking for opinions and help with problems and therefore you don't hear from people who are fine - that's natural, eh.
hi, I'm on 150mg morning and evening and am allowed to take an 'extra' 50mg over and above which in the last few months is almost daily as the dreaded AF has been awful in as much as it's happening almost every day. Flecainide has been ok and I'm unaware of any particular side effects. On saying that, I do sometimes find that if I'm ok with no flutters going on and I take my regular dose, it's almost as if that brings on an episode of the AF. Very strange. I've been referred apparently to an EP in Edinburgh but I only found that out last May when I was taken into hospital with a suspected heart attack!! I guess all will one day be revealed eh? Take the meds and good luck with it all!stay well
Blue
I had no problems with Flecainide. It also kept me in normal rhythm except for once when I forgot to take the evening dose ( oops) .
I started Flecainide when it was used intravenously to cardiovert me after I was in high rate AFib 165 - 195bpm for the best part of 8 days. I took 2 x 50mg maintenance dose
I would go back to your gp and ask him to chase it up... I know they are busy at Blackpool cardio centre but still they should still see you and hopefully give you the appropriate treatment for your needs ...all you best...
I took flecainide for over 18 months with no issues, worked really well for me. I always allowed 2 hours after food and 1 hour before as that was instruction given to me on the leaflet. It took me a while to pluck up the courage to take it when it was prescribed for me as I’d heard similar things to you on this forum but after a further chat with my cardiologist I did. So glad I did. Good luck.
I take 100mg Flecainide am and pm - with 5mg Bisoprolol am. I started off on a 50mg PIP then moved to 50mg am and pm, then later 100mg am and pm which I've been on for quite a few years now. No side effects and it keeps my afib at bay. It's a wonder drug for me, I used to have terrible episodes of afib prior to using Flecainide.
I don't worry about whether I take it with food or not. I take it first thing in the morning then last thing at night - the doses are not 12 hours apart but it seems to work for me.
Hi Andy I am also waiting for an ablation at blackpool(my 2nd) waited a year so far. 🙁 I was put on Flecanide after my first & it was horrendous. Didn’t sleep for 4 days, had muscle spasms all the time, dizzy, sickness & breathless. Rang EP after 4 days & stopped it straight away. That Ablation lasted 2 yrs. Hopefully you will be one who can tolerate it. Ps mum was on it for years with no problems.
I have been on 75mg flecainide for 7 years, 8mg candesartan and 3,75mg bisoprolol plus warfarin since 2010. Am now 84 and have no problems with the medication, Ebenezeer38
I am on exactly the same dose as you and have been for years. No problems at all with it. Hopefully, you won't have any either!
Just chiming in. I have been on 100 mg twice a day for several years now with no problems or side effects.
Been on Flecainide 50 mg twice a day for couple years now. Mine said with or without food. I also take a beta blocker with it and Eliquis. Had no problem. In my 80’s and weight almost 100 lbs. tried to go off and just use as PIP since had not had any AFib in several months but had to go back on not for AFib so much but some other arrhythmia that was driving me crazy. Was still taking the beta blocker but didn’t do anything for that arrhythmia so went back on Flecainide and it stopped. Thankful I can take Flecainide without any problem.
I was put on flecainide 50 2/day but they did not stop afib. It was then in creased to 75 2/day. At this point I developed dizziness and weakness. 30% of people who take flecainide experience dizziness. I stopped the flecainide and will live with the occasional afib as it is lesser of the evil. On the other hand you might belong to the other 70% who are not effected by this side effect. Give it a try and see what happens. You can always stop
I have been on various doses of flecainide since 2016. I currently take 50 mg twice daily with metoprolol ER 50 mg twice daily. I had problems with the regular metoprolol not holding the flutter that the flecainide was causing. The higher dose did not work for me, it created flutter. I took 150, 100 and 50 twice a day. The 50 mg twice daily works well. I have never had nausea, dizziness, or any side effect other the increased rhythm problems, which was dosage related and resolved with reducing the dosage.
Curious as to the sweeping generalisation of 'English food' causing issues with flecanide. What particular image do these posters have? A full cooked breakfast followed by fish n chip lunch and steak and kidney pudding ,followed by plum duff and a pint of cream each day ? Lol😁
It is not the type of food at all,merely the fact that ,as I found out,it is recommended to take Flecanide on an empty stomach for full absorption of the dose. I wasn't feeling the full benefit. Some people get nausea doing this ,so for them it is best taken with food .
Since doing this I have been able to reduce dose ,still with good effect on my arrthymias.
Off to get some bread and dripping now ..
" A full cooked breakfast followed by fish n chip lunch and steak and kidney pudding ,followed by plum duff and a pint of cream each day ? Lol😁"
Exactly! And here in the states it's Egg McMuffin and donuts for breakfast, followed by Big Mac, Apple Pie and MilkShake for lunch and a Texas BBQ with Corn Dogs for dinner.
😀
But more seriously, where do you get your information that flec absorbs better on an empty stomach?
From what I've gathered from this thread, is that the Flec formularies available in the UK state take on an empty stomach, while my formulary in the U.S. states "with or without food".
My pharmacist also says with or without food as have some UK pharmacists as reported in this thread.
It could be that there is something in the different formularies that warrants different instructions, or it could be that one formulary was tested with or without food and another formulary only tested without food. Or not. At the end of the day, we all try to make the best decision we have based on the information at hand and this forum is great for adding more information to the mix, whether we eat fish n chips or a Big Mac for lunch.
Jim
Hi!My GP suspected that I wasn't getting the full benefit from the maximum dose if flecanide ( I was on 300 mg a day at the time)
He contacted my Electrophysiologist ,and he said he had seen this before with some patients, particularly those with some gastric conditions. I have intermittent IBS. He said up to 3/4 of a dose can get malabsorbed, including other drugs,if taken alongside food.
Made sense, and it works for me as I'm now on 200 a day and 98%effective for me.
Yes, studies on the same subject can vary in results so much, depending on the criteria and focus! Trial and error with most things I think as each person is so individual.
On a similar note,I do think our diet is so crucial to our overall health,we are what we eat! 🙂👍 ...and drink lol!
Hi Andy, I have been on flecanide for more than 10 years and never had a problem. I started at 50mg twice a day but then went up to 100mg twice a day. I can honestly say I have not had a single problem with it. I cannot take betablockers as they made me ill each time the hospital consultants insisted I take them, but flecanide has been the best thing ever for keeping the AF at bay. I've only had three episodes in the last 5 years whereas before flecanide it was 5-6 hospital admissions a year. If I do start an episode, I take an extra 100gm tablet as a pip.
One of the problems of forums and facebook - we can't 'see' how a person means what they say and it is so easy to misinterpret things. There seem to often be misunderstandings on forums because we can't hear tone of voice, or see facial expressions and it is harder to clarify things in type than it is face to face. But as Bob says, often those that have been 'sorted' or no longer have problems visit the site less and less and may ultimately leave altogether, so then it's those of us still hoping for solutions that remain. It's so good when experienced people do visit again and keep our hopes up for our own future. There is so much really useful information to be gained though, and Bob has been here since the start and is a great friend to many. Hope you are keeping well
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