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Flecainide

Joeyy06 profile image
55 Replies

Hi everyone

I was diagnosed with AF in April after 4 years of episodes ( 2-7 hours long) that were never captured on ECG. I was given Flecainide 50mg pill in the pocket when I have an episode. Despite losing 10% of my body weight, avoiding big meals especially late and cutting out alcohol, I just had my longest episode yet at 14 hours, which I rode out at home and it has just ended. The point is, I took the Flecainide for the first time at around midnight with no effect whatsoever! Can’t help wondering if it made it longer than usual but probably not. Has anyone had this happen to them? When the cardiologist prescribed them I really believed it would stop an episode! 🤯

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Joeyy06
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55 Replies
mjames1 profile image
mjames1

If you're not on daily Flecainide, 50mg is a very low PIP dose. My PIP dose was between 100 and 200 mg. Some are authorized to take up to 300 mg. So it's very possible it didn't work because of the low-dose.

To be clear, do not take more Flecainide than your doctor says...because there may be a good reason why you are only authorized to take 50 mg. On the other hand, you should let your doctor know that the PIP dose did not work.

Hopefully you're seeing a cardiologist or ideally an ep (electrophysiologist). At least in the United States GPs are not very well-versed with Flecainde and how to use it.

Jim

Joeyy06 profile image
Joeyy06 in reply tomjames1

Thanks. I will speak to the cardiologist as it says take 50mg once a day so maybe GP prescribed wrongly (my cardiologist passed dispensing to GP!).

mjames1 profile image
mjames1 in reply toJoeyy06

it says take 50mg once a day so maybe GP prescribed wrongly

As written , that is not a PIP (as needed) prescription, but rather a daily preventative dose. As a daily preventative dose, it's still on the low side, as the usual starting dose is 50mg bid (twice a day) and sometimes 100mg bid.

Also, often you take both a daily preventative dose, as well as a PIP dose on top of it, should you have an episode.

I would definitely seek clarification from both your GP and cardiologist.

Jim

Joeyy06 profile image
Joeyy06 in reply tomjames1

Thanks, will do

wilsond profile image
wilsond in reply toJoeyy06

Agree absolutely with above. It seems far too low as a PIP. Best check it out.

jeanie245 profile image
jeanie245 in reply toJoeyy06

My cardiologist gave me that med for PIP. He told me to only take it if needed. My dosage is 25 mg. But the directions on the bottle says take Wednesday daily. I don’t take daily because I have no refills, and because the doctor verbally told me to use it only as needed.

I also take metoprolol 50 mg which works great and Eliquis 10 mg.

jeanie245 profile image
jeanie245 in reply tojeanie245

Oops “take once a day” not “take Wednesday “

Obis891 profile image
Obis891 in reply tomjames1

As a retired Pharmacist I totally agree with you.Roger

BobD profile image
BobDVolunteer

How much flecaainide were you told to take as a pill in pocket. 50mg would normally be a daily maintenance dose. Most people using PIP would take a minimum of 100mg at the onset of an event with a maximun 24 hour does of 300mg.

That said, AF is almost always a progressive condition.

Joeyy06 profile image
Joeyy06 in reply toBobD

Prescription says 50mg once a day?! But it’s defo a PIP

BobD profile image
BobDVolunteer in reply toJoeyy06

Seriously if it says once a day it is maintenance dose. PIP would say "Take 100 (or200) Mg at start of AF . No more than 300mg in any 24hour period.) I suggest you discuss with your EP.

Ppiman profile image
Ppiman in reply toBobD

It means no more than once a day, i.e. once a day, as required, I imagine.

Steve

Sixtyslidogirl profile image
Sixtyslidogirl

My cardiologist gave me 50mg as a Pip. He said to ignore the once a day thing on the instructions as the pharmacist system couldn’t cope with PIP idea. The first time I took it, it didn’t work. I reverted in the morning which is what usually happens. When I told him about it, he said if it doesn’t work, take another 50mg in an hour. I haven’t had one since then so can’t report back on that.

Steadybeats profile image
Steadybeats

Hi Joeyy06,

I suffer from af, and an attack usually requires an a&e visit. I take 50 mg twice a day and carry 200mg as a pill in the pocket. After taking the pip, it can take up to 4 hours before there are any relief of any symptoms, and up to 12 hours before my heart rate drops. We are all different and react differently to drugs. My advice, speak to your cardiologist and mention your concerns as he can do something about it for you. Good luck

Mugsy15 profile image
Mugsy15 in reply toSteadybeats

Interesting - may I ask why a bout of AF necessitates a visit to A&E in your case?

Steadybeats profile image
Steadybeats in reply toMugsy15

Hi, for me an af episode always occurs in the evening. It starts with an unbearable severe chest pain which radiates to the arms. Unable to breathe, talk or stand, I am in a bit of a state. Pulse rate rockets to 180 to 200. The flecanaide pip takes a long time to effect, so it was decided that I should call an ambulance as it may be a heart attack and not af. Without exception, paramedics insist I go to a&e to bring me back to normal which they do with drugs or cardio version. I have been on the list for an ablation for 11/2 years and hopefully will have it in the next 2 months.

So thanks for the interest but put simply I go to a&e as it may be a heart attack and not af.

Mugsy15 profile image
Mugsy15 in reply toSteadybeats

Oh I can absolutely see why you should go, given those symptoms, and I'm sorry AF is so horrible for you.

My cardioversion then ablation gave me my health and comparitive peace of mind back, so I sincerely wish the same success for you.

Aprilla12345 profile image
Aprilla12345

Thanks for update so what's the next plan. For you

OzJames profile image
OzJames

Joey my Cardiologist never gave me an amount as PIP so like you it didn't work. Since discussing with hime i had the option of going 100mg straight away then if nothing happens another 100mg 2 hours later. Be careful do not self prescribe.

I've since chatted to him and am now on maintenance dose of 20mg twice a day plus 10mg Metoprolol twice a day. Any more and my HR drops too much. Right now i feel great been clear since end January and HR is between 55-60 most times at rest. I did also check my bloods last year and was found to be deficient in CoQ10 and low in Vit D and Magnesium. I've been supplementing with both and feel good. I cleared the Supps with Cardiologist before i started. I believe to tackle AF it is a combo of things we have to do. If you can moderate exercise daily helps with both the heart and mind!

Janna24 profile image
Janna24

Sorry to hear about you long episode. Dose you took is not enough to stop it. PIP dose is 150-200 mg . But be careful , to take it you heart need to be structurally healthy.

Tapanac profile image
Tapanac

I found it took about an hour to kick in. That and the 1.25 bisoprolol

All the best

Pierre1455 profile image
Pierre1455 in reply toTapanac

do you take the 1.25mg bisoprol and 100mg flecanide at the same time?

Tapanac profile image
Tapanac in reply toPierre1455

morning

1 x 50 mgs flecainide

1 x 1.25mgs bisoprolol

1x apixaban (anti coagulant)

I take them altogether about 8.30am give or take half to one hour

Evening

1x 50 mgs flecainide

1x apixaban

1 x pravastatin (20mgd)

Again altogether roughly 8.30 but if I’m out or can’t for any reason whatever time is convenient

Should I have had long attacks of afib/tachycardia sometimes for 5 weeks or more duration especially after covid vacs or covid itself, I would take extra flecainide (never more than 200 mgs ( not at once - spread out with st least dn hour between) although it is said you can take up to 300 mgs spread out) and an extra bisoprolol

Please remember this suits me but definitely see your GP, cardiologist or EP before taking anything until you are prescribed

I would add that I had a pacemaker inserted and this has been great, but again I had the covid jab and then caught covid (GP said could have been the jab which was too strong for my immune system which gave me the covid) and it did for a while mess up my afib/tachycardia

Anyway……

All the best……Pat

Pierre1455 profile image
Pierre1455 in reply toTapanac

thanks very much for taking the time to explain all that information to me. Greatly appreciated.

Karendeena profile image
Karendeena

Flecainide didn't work for me. You can still get episodes whilst on anti arrythmics. Mine still lasted up to 36 hours so I finally had an ablation this year

Magson profile image
Magson in reply toKarendeena

Flexible didn't work for me either. In fact it made things worse. Ablation was the route I took in 2018.

manabouttown profile image
manabouttown

Your dose of 50mg Flecainide is way too low.The standard dose in A&E is 300mg -ie 6 tablets plus a beta blocker like Metoprolol or Bisoprolol to lower the heart rate.I would also advuise you to get a Kardia device to be able to record an ECG whilst you're having an AF episode.

BeeBee79 profile image
BeeBee79

Flecanide works well for most people but for me, it made my AF worse and actually ended up with a life changing reaction. Please discuss how it affected you with your cardiologist…..

Rvlindahl profile image
Rvlindahl in reply toBeeBee79

I am considering flecainide as a pip. Did your Dr. say what it was about your heart that led to the reaction? I must admit to being afraid of this drug from things Ive read.

BeeBee79 profile image
BeeBee79 in reply toRvlindahl

One known side effect is that it prolongs your Long QT interval. It’s been suspected but we’ll never know for sure, that it caused me to have a cardiac arrest. My long qt interval was delayed - my doc thinks it was the Flecanide but cardiologist in Greece where it happened doesn’t think it is. The same thing happened when I took a similar drug called quinidine - not a cardiac arrest but it was prolonging my Long Qt again to unacceptable levels. The doc explained it like a light switch going on and off and the longer the interval, the more danger of the lights staying off permanently….

lifts984 profile image
lifts984

Hi , I have had AF for 15 years, occasional like you but has got regular in recent years, originally I was given Flecainide as a twice a day tablet , but like you it did not stop episodes and effected my libido (possibly) . I reverted to taking when an episode goes on I consider too long. I recommend drinking water , trying deep breathing, and eating a banana or two , once it has started . My episodes can last 8 - 16 hours once 24 hours. Yes it feels uncomfortable and slightly worrying, after around the 12 - 15 hour mark I may take one Flecainide then on an empty stomach , I also carry on with life , in fact I go to gym and play golf and found ( be careful ) that it often stops when exercising . I think it might that getting the heart to beat slightly faster with episode it then reverts to normal as it should . So in conclusion I am not certain if Flecianide works definitely or whether just the passage of time , but often the heart returns to normal after taking at that time period and on empty stomach . Good advice from below regarding doctors advice on dosage , but you could ask if possible to increase dosage during an episode . I have written in other places regarding my usages of different methods of controlling my AF which is helping me , Good Luck my friend !

Vonnegut profile image
Vonnegut

When I was first prescribed Flecainide, by an EP who we consulted privately after the lowest dose of Bisoprolol proved too much for me to take daily, it was for 100mg to be taken as a pip- rather than just 50mg which might explain why it didn’t work for you! Now that I take 100mg twice daily, I have not had an episode for several years and only one breakthrough episode around the time I must have been infected with covid with no other symptoms but a positive test and that was ended with an extra 100mg thus reaching the maximum daily dose for the one and only time. Good luck!

DennisVA profile image
DennisVA

You should probably start thinking about an ablation before you start having afib that doesnt self correct. You also need to see an electrophysiologist (EP). With that said, 50mg flecainide is ok if you are having occasional short bouts of afib, but for proper titration you need a higher and more regular dose. I had no issues with flecainide and take every day.

Pommerania78 profile image
Pommerania78

Have you given up gluten? Do you take enough sodium? How are your Spiritual and stress conditions?

Joeyy06 profile image
Joeyy06 in reply toPommerania78

Not given up gluten…should I? Have adopted a low carb diet so no bread, pasta etc. This recent episode has made me very stressed!

Pommerania78 profile image
Pommerania78 in reply toJoeyy06

Since October, 2023 the day I went to the emergency room, I have given up TOTALLY gluten, sugar - to the extent that is possible, and all the bad foods. If you're interested I can tell you what I do and don't eat. So, I have lost 69 pounds and I have not had an episode in months. I am also cleaning up my Spiritual life and I take 100mg of Flecainide twice a day and 50mg of Metoprol once a day. I have lost 27 percent of my body weight with more coming off. You may need very much to lose more than 10 percent. I have discovered that losing 10 percent is when good things BEGIN, not END. I think one's body begins to recover once one loses 10 percent. So, you may very well need to lose more. But definitely get off gluten. Your gut will take time to recover.

Pommerania78 profile image
Pommerania78 in reply toPommerania78

I have learned many things since October. One of the most important things is to flee from those who tell you that you can only "manage" Afib, or any disease for that matter. I don't want to "manage" Afib or any sickness, I want to expel it from my body. Examine yourself and see what YOU can and should change and reform. Medicine usually suppresses the symptoms of a disease, but it is up to you and me to cure it. My response to Afib has been threefold: Spiritual, Food and Body Reform, and Medicine. Avoid: passivity and defeatism.

Simplybe profile image
Simplybe in reply toJoeyy06

Joey stress is a real problem for your heart health and health in general. I changed a lot of my medical needs by changing my lifestyle. Medicine is a business and they want you around for a long time. Learn alternative cures for what you are going through. Do not rely on medical maintenance there is no end to it. Take control of your health like you have and stay the course. All kinds of things can cause afib events. Research and more research. Hang in there

Simplybe profile image
Simplybe

hey Joey what do you think sets of your AF. Mine was lack of sleep and stress. Was on flecinide for two years @50 bid I no longer take flec..Do all the research you can on fib and causes. Sounds like you are building up to events. Make sure you are getting enough oxygen while you sleep. And find ways to cut stress. I have not had an afib event for almost 2yrs now. I feel myself getting close at times but I know what sets me off. Good luck

Joeyy06 profile image
Joeyy06 in reply toSimplybe

Mind if I ask why you no longer take Flec? And how you have stopped having an episode for 2 years? Mine have always started in evening after heavy/late meal or morning after alcohol. Inhave made lots of changes to diet and lost weight so was upset that I had another one. It looks like it is the nature of the beast…

Singwell profile image
Singwell

Reading down the thread there definitely seems to be a confusion about whether the dose is a maintenance dose or PiP. Prior to my ablation I took 50 mg X 2 a day and could take up to 300 altogether across 24 hours if AF broke through. I never in fact needed more than 200 across 24 hours.The dosage is a variable thing in the sense that dependent on your BMI, age and ability to absorption the medication (pretty much any really- not just Flecainide) your system will need and tolerate different amounts. The guideline for Flecainide in the UK is minimum dose of 50mg and 300 max across 24 hours. So it's possible you need to find a new sweet spot that works for you.

Currently post ablation I still get occasional outbreaks and if they're troublesome and don't resolve on their own I find 50mg is sufficient. I'm.68 and 52 kilos.

Great idea to contact your cardiologist for proper guidance.

Maglyn profile image
Maglyn

Agree with all comments. I'm on a daily, preventative dose, of flecainide 50mg twice daily. Literally just had an AFib episode and have taken 100mg on top of my daily dose and almost gone! Possibly discuss this with your cardiologist. Best of luck

anncrn profile image
anncrn

I had pill in the pocket for 4 years but then started to have episodes every few days went on to 50mg twice daily which slowed them down to once a month and was told to take another 100mg if episode started works well but still have episodes regularly about once a month but only last around 2 hours so to me they work well. Mine always happen during the night.

ian16527 profile image
ian16527

I found that it was best to wait 2 hours before taking the Flecainide (100mg). This would usually end the episode in another 2 hours. If I took it straight away then it usually wouldn't work, and could last 8-10 hours until I then took another 50mg which worked after an hour or so.

One cardiologist suggested another 100mg after 2 hours if the first didnt work, but that made me feel worse

GretaG profile image
GretaG

Hi Joey. I was officially diagnosed with Afib in 2019. My physician mentioned the pill in the pocket but said he didn't prescribe that way. I was given 100mg of Flecainide 2 times a day. My episodes stopped but I felt tired all the time. They lowered my dose to 50 mg a day which turned out to be enough. I also take 50 mg of Metoprolol once a day. My Afib has been under control since then. I hope this helps.

Cos56 profile image
Cos56

wow, 14 hours in AFib. Are you on any anticoagulant?

Joeyy06 profile image
Joeyy06 in reply toCos56

Yes. Is that an unusually long episode?

Cos56 profile image
Cos56 in reply toJoeyy06

I don’t know about it being unusual but I was concerned as to whether you were on an anticoagulant and having a longer than a few minutes episode. The first one I ever had, and on no meds obviously , sent me to the hospital after 45 minutes of me waiting for my heart to go back to normal. When I got there, everyone was in a panic and started an IV, I had a CT scan…they were afraid I’d throw a clot. My question to you was out of concern. ❤️ May your episodes be short and safe😊!

Dollcollector profile image
Dollcollector

When l had flecanide as a pip l was told to take 300 mg.

dominicp profile image
dominicp

Your experience is a bit like mine. I have had AF for 1.5 years, 5 episodes in total, 2-14 hours long, all in evening or overnight. Triggers are alcohol and large evening meals which I now avoid. The last one was 4 weeks ago and the first time I took Flecanide. Took 100mg straight away then another after 30 mins. Episode ended after 3 hrs, so for me it seemed to work. I'm hoping to have an ablation in a few months.

Joeyy06 profile image
Joeyy06

Thanks everyone, as ever, for your supportive comments. I have contacted my cardiologist about the dosing so will see what he says. It is definitely a pill in the pocket as his letter confirmed this but I’m guessing he started me off low. Will clarify asap. Thanks again.

Cos56 profile image
Cos56 in reply toJoeyy06

I may ask my EP if a pill in a pocket would work for me. I take 50 mg of Flecainide twice a day and haven’t had an episode in 3 years. Just had a pharmacological nuclear stress test to make sure all was well after taking it that long, just to check things out. Maybe I shouldn’t tempt fate and leave things alone. BUT I would really like to stop the anticoagulant. If Flecainide is working, do I need Eliquis?🤔

BaileyC57 profile image
BaileyC57

When I was on Flecainide , I took 100mg twice a day and it did work well, no AFIB!

AAJJTt profile image
AAJJTt

I have been on a daily maintenance dose of Flecainide for 5 years - 150mg a day; it’s worked well, currently at 4+ years with no discernible sustained episode. Recently titrated down to 100mg (2 x 50mg).

Have a backup PiP - 2 x doses of 100mg Flecainide and 2.5mg Bisoprolol - if needed. To date, never used.

No anticoagulant at the moment.

Joeyy06 profile image
Joeyy06

Thanks again for all replies. I have managed to get clarification re PIP. Consultant did prescribe 50mg to try as he said it works for some people as PIP but if/when happens again take 100mg and see if that works. I am still also focussing on losing weight, exercising and healthy eating. Trying to think positively but hard sometimes with this beast. I do ‘mourn’ my life before Afib and wonder a lot if I could have averted it (not done this/not done that) but that’s pointless really and it is what it is!

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