Flecainide - is daily or PIP better?

I saw my cardiologist last week and he wrote to my GP asking him to prescribe Flecainide as a PIP. However, when I picked up the tablets today I noticed that the instructions were for 50mg, twice a day. When I queried this with the pharmacist, he said that it's better to take it as a preventative rather than a curative.

When I asked, the GP receptionist said the GP has mis-read the cardiologist's letter and will change the prescription to PIP.

But I'm just wondering if anyone has tried BOTH methods of taking Flecainide, and what worked best for them? Thanks :o)

43 Replies

oldestnewest
  • Hi Wendy, I was on 150mg of Flecainide slow release and had a lot of side effects so the doctor told me to take 100mg as PIP when needed. I had a SVT last week and took the 100mg as instructed but it didn't work so I ended up in the Emergency dept where they stopped it with a chemical injection. I think if I had taked 50mg in the morning and 50 again in the evening, it would have worked as a preventative measure. When I asked the chemist she said she thought 150mg was too much for me as I'm quite small and slim and my blood pressure is only 10/5.

    I've heard that only 200 or 300mg work as PIP but when I asked my cardio if I should have taken 200 instead of the 100mg, he said no. ( with no explanation as to why). Good luck and hope you get some good answers on here that will help.

    Trish

  • Thanks Trish - what side effects did you have with the slow release?

    Unfortunately the cardiologist has discharged me, with the expectation that I'll be seeing an EP soon. I wish I'd asked how much I'm supposed to take as a PIP. I now have the 50mg tablets and no idea how many to take. I guess I'll have to make an appointment to see the GP and see if he knows! (I'm tall and well-upholstered, so may need a hefty dose haha).

  • I had tinnitus in my ears every evening in bed which would wake me up because it was really loud and always short of breath which would wake me too. On the fourth day I had a different type of arrhythmia which the doctor said was extra systole and it wasn't dangerous. I think a lot of people will tell you that they take 200 mg or 300mg but 300 is the maximum dose and I wouldn't feel comfortable taking that amount. I wish I had take 200mg last week and maybe I wouldn't have ended up in hospital. I'm sure you are going to get lots of replies as people are so caring on this site. You'll have an answer in no time although everyone is different so what amount is good for them maybe not good for you but 50g as PIP is definitely not going to stop it

    Trish

  • The absolute maximum or it will kill you dose of flecianide is 300mg in any 24 hour period . (well it might not kill you but you know what I mean). During the brief period during which I took it it was entirely as PIP and 300 mg is what I took.

    You could try building up to this but I would seek advice as we are not medically trained and should not nor must not advise on such things.

  • Wendy, I have just seen your post about Verapamil, so you are on it too. I wasn't sure if they were both safe to take together, (Vera and Flec) but they must be if your cardio has given you the go ahead to take them together. You could maybe ask your doctor if you could take a little dose daily of Flecainide to keep your bouts at bay if they are safe to take together.

    Trish

  • I took 100mgs of flecainide twice a day for about two and a half years. Wonderful to start with (I was AF free for just over a year) but AF crept in after a while and my cardiologist increased it to 150mgs twice a day. This brought no improvement but my EP said that without it he thought I would have AF every day. I used to get it for a few hours once in about two or three weeks.

    I gave up daily flecainide completely four months after an ablation, but I still get AF occasionally.

    Since then I've taken flecainide as a PIP, starting with 50mgs and a further 50 if needed, but in fact I no longer bother with it as my AF seems to be self terminating.

    It is hard to say, if you are taking flecainide, whether you would be worse off when you are not taking it. I am resisting suggestions that I should be taking it daily again as I am quite happy without it, though I don't know what effect the sessions I get are having on my heart. I think I've gone 28 days since I last had AF and it's the longest clear spell I've had since April.

  • Nice to hear you're getting less AF :o)

  • From April to June it was 11 to 14 days between sessions and then lengthened to 18 to 22 days. No idea why as I have not changed anything.

  • My episodes were 3 to 4 days then 7 days and now they come every 8 days and last 2 days.

    Keith.

  • It's usually the other way round and they occur more often.

  • I had my ablation over a year ago and the EP Specialist kept me on Flecainide 50mg twice a day also Diltiazem 120mg once a day after the Ablation - he told me he was very pleased and was happy that they had got the troublesome areas... felt marvellous no Flutters or AF. However i felt if the ablation was a success why am i still on these drugs plus Pradaxa blood thinner... after 6 months of only having maybe 2 minor episodes - the dr said i could come off the heart meds and stay on the Pradaxa.. - I was a bit worried about it - but my AF episodes have been few and far between - so feel quite happy - I feel so much happier as i did not like the side effects of the drugs.. weight gain puffy legs - this seems to be settling down thank goodness.. I have wondered if i got an episode when away what would i do? I have just had my first Holiday in Fiji for 2 yrs it was marvellous - i was good as gold but had a very alcoholic cocktail and had a flurry of heart beats - but settled quickly - learned my lesson

  • Trish - Well I'm trusting that the GP, and the local pharmacist wouldn't advice daily Flec if it was contraindicated with Verapamil. However, I found this on the NICE online site ... 'increased risk of myocardial depression and asystole when flecainide given with verapamil.'

    If you don't hear from me again I've gone into asystole!!!! :o)

  • I used Flecainide twice daily at 100mg each and used a 3rd dose of 100mg if AF kicked in and didn't convert to NSR. This was in conjunction with Bisoprolol 1.25mg once a day.

    I still had daily episodes, so my EP switched me to amiodarone 200mg for the short term until my ablation in 3 months time. I'm having way less side effects of sluggishness and my brain fog has cleared. I know amiodarone can have some nasty side effects but the EP says for the sort term it should be okay.

    I'm a 50 year old with lone P-Af. Hope that helps. Kelli

  • Well Kelli, it seems we all react differently to Flecainide, I'll just have to suck it and see!

  • Hi Wendy, I started taking 100mg Flecainide as a pill in the pocket almost two years ago. Up to that time I'd been getting attacks every 4-6 weeks - never ever went longer than 6 weeks without an episode. At first it worked beautifully and I thought it was amazing, but then after a short while (months) my attacks got closer and closer until I was having to take 2 x 100mg Flec every day. Once it started getting it into my system, my heart protested if I dared to try and come off of it.

    Sorry, but I had to laugh regarding your asystole - sounds like you were being very rude!!

    Jean

  • Hi Jean, seems like Flecainide wasn't the answer long term, for you. I'd much rather take it PIP rather than daily.

    PS Well my eyes did widen in horror when i read the NICE warning. Being an ex nurse I know exactly what asystole is (no discernible electrical activity on the ECG monitor) and hope it never happens!

  • About the same as PEA then.?

  • With PEA you still have some electrical activity on the monitor, but with asystole you're flat-lining. I sometimes didn't have a radial pulse when in bad AF, before I started on meds earlier this year - so I guess they must be doing something :o) But I can't have been in true PEA as I was always conscious, so it was probably just that the ventricular output was so fast and weak it didn't reach the radial pulse very well.

  • With me. the screen said all well but no pulse as muscles not responding. 3 1/2 mins of CPR did the trick at the expense of my ribs. Just as well I was on the table at the time eh.

    I don't have a radial pulse on one arm now since radial access angiogram. Must be there somewhere but almost impossible to find. Must have moved the artery. lol

  • Oh, I think you were definitely more PEA'd than me haha.

  • I'm a fan pf PIP flecainide and use 50mg repeated after about 1 hour if not resolved then another 50 at hourly intervals. The max total I've been up to in a day is 200mg

  • I use 50 mg x 2 and I think with my other drugs a few ectopics not every day I have been free from af for 2 years. Just take one day at a time not projecting into the future also told if I go into af it's not permanent to take it as a pip. Glad I haven't had to do this as yet. I feel tired but probably a bit of age plus bisoprolol and amlodapine I think the cocktail is probably the answer for me. Best wishes

  • I laughed at your physical description of yourself - that's me too.

    I saw my EP recently and discussed flecainide. His instruction is to take 100 flecainide after 20 mins of AF. If it doesn't work within 3 hrs then repeat. Max is 300 per day. If I deteriorate to 3 attacks in a week then I am to start taking 2 x 50 daily. I also take 2.5 bisoprolol daily, and have done so since my ablation 3 years ago.

    He was especially adamant that I do not ride out episodes without the flecainide. We have discussed that on here recently. The heart would get into the habit of fibrillating.

  • Your EP sounds v sensible, I'm looking forward to seeing one for the first time, hopefully will get my appointment soon :o)

    I have been concerned about 'habitual' fibrillation, as it got to the point where I was in bad AF about 50% of the time. However in the last fortnight I seem to be a bit better! I may be clutching at straws, but I'm hoping that increasing the time spent in daily deep meditation is finally having an effect. Well, anything's worth a try haha!

  • I hope something like meditation can help, but my (and many many others') experience is that AF progresses rather than declines without ablation intervention. And the sooner, the better, once you are living with more than without fibrillation. For many, too, flecainude simply stops working.

  • Yes, I know that I'm lucky to have one of the best and most highly rated of EPs. He is a real gentleman and easy to talk to.

    Did you realize that flecainide is an old drug which is inexpensive and non - addictive? I do know that it's powerful and not to be messed with, but right now it does work for me.

  • I have had Afib for 20yrs first had Flecainide as a pip but got fed up ,it only happened about 8 times a year but at inconvenient times so cardiologist told me to take it daily 100mg am and pm and was fine for about 8years then got a episode and had to have cardioversion then fine for a year then happened again last year same result and now been free for another year. The downside is that I have started Warfarin on their recommendation all the NOACS gave me very bad side effects so I am persevering with the cold hands,hair loss and also had a very bad nose bleed! I think it also affected my eyes but the Dr's all say not and that is"age related". So you can see that we are all different and just have to find which suits us the best.

    Best of luck Jo.

  • Thanks Jo. I have never had a 'convenient' episode of AF, apart from when I was on a holter monitor :o)

    My hair is falling out so much I'm considering getting a wig, it's awful. Have to keep on telling myself that if I wasn't on Apixaban and had a stroke, life would be far, far worse.

  • My thoughts entirely, I have developed macular degeneration one wet one dry eye I am still not convinced it was not connected to the horrendous nose bleed I had as I have yearly eye tests and nothing ever indicated this problem. I had never ever had a nose bleed in my life before.

  • Hi , I have experience of both, started off 10 years ago as PIP , but, I got fed up with the after effects of 300mg when I had an episode and started daily 2X50mg - I have no effects at this level and apart from chest infections or other sickness I have very little AF - longest period free 18 months - for that reason INMY CASE I am happy with using it as a prevention.

  • Glad you've found a method that is working for you. What after effects did you notice when using 300mg as a PIP?

  • I found that I couldn't walk that quickly without feeling I would fall over - or indeed get up the stairs - nowadays if I do get AF i take 3* 150 which makes a total of 250 for the day and doesn't seem so bad and happens rarely so I would rather stop it rather than let it start. My Cardio believes that you should take this approach rather than PIP as " letting AF break out a lot means that you will get more of it" and his other point is that if you have non none in your system it means that you need to take the 300mg to stop it. The problem with Flecanaide in my experience is that it takes 3 hours to get into MY system and circa 6 to achieve maximum strength so if yo are starting from zero I need that big dose to stop it. I am now on year 9 of this regime of the 2*50mg with few breakthroughs. I also take magnesium and follow a diet with at least 20mls of olive oil per day. Nothing is perfect but I an 67 walk 10 miles a day and manage the curse of AF not bad. maybe one day the Flec wont work in which case I hope ablations continue to improve as they have done over the last 9 years. I consider myself very lucky to have such a good experience on Flecanaide.

  • Teach2learn - I've had AF for about 13 years. Since then, as you point out, AF just gets worse over time - and mine is persistent now.

    However, I've always been interested in the spiritual side of things, and have meditated daily for a long time. One of the worst things about the AF getting so bad was that I felt a failure for not being able to cure it by making lifestyle changes and/or cure myself from a spiritual healing perspective.

    About a month ago I reached a personal crisis point. The combination of taking meds/not wanting an operation/feeling so ill, provoked me into a real quest for self-healing. Since then I've undertaken a lot of spiritual exploration into my individual causes for AF, and am deeply committed to unravelling those negative emotions. Most of this is done through meditative and energy work. Most people consider this to be weird, but as my view is that some illness is caused by negative experiences and emotions, then it makes sense to me :o)

    And I am feeling so much better for the past fortnight - early days yet, but I'll continue working through things.

  • Wendy, I was diagnosed with paroxysmal AFib in 2006 (attacks that lasted up 24 hours). I attended the Atrial Fibrilation in London and was prescribed 50mg flecanaide twice daily. I was AFib free from the moment I started taking it up early 2015. In other words it worked for me for around 10 years.

    My AFib started again in 2015 despite the Flecainide. I had an ablation last year and have been AFin free for nine months. I currently take no medication.

    Flecainide was a great drug taken twice daily for me.

  • That's brilliant, it's so good to hear a success story!

  • I was on flecainide 50 mg twice a day from Dec until July 11th. I did absolutely wonderful (I have persistent Afib that requires cardioversion) this drug made me feel like I was completely normal, as I had no episodes of afib via pacemaker reports. BUT, when they did my stress test, I failed at only 5 minutes into the test my heart rate started dropping instead of going higher. I had gone into a dangerous other rhythmn problem, VTACH. My EP said I absolutely could no longer take my miracle drug. I have required 2 cardioversions since being off of it. One on the 29th of August, another on the 31th. The drug was great, but I am no longer allowed to have it.

  • That's a very disappointing outcome for you, although lucky it was picked up before anything bad happened to you. I wonder if anyone else has reacted to Flecainide in a similar way?

  • I do not know, because basically I just got out of breath and light headed, which was a side effect of another drug I take (metoprolol). I thought nothing of it really, my EP exact words, it is not worth dying for. I had rather see you in Afib. I did not want to stop the drug, was working 5 busy normal days a week. I guess I am a jink, I had a cardiac arrest on the second pill of Tikosyn they gave me in the hospital last year, also very uncommon! No other health issues except slow heart rate.

  • Cardiologist prescribed 300mg as PIP for me ,I take this when an episode comes on,within 40mins to 2hrs,my heart is back to normal,Taking them daily,made things much worse for me.

    Eleanor.

  • I take Flecainide and it really did work for me. Have just had an ablation and waiting to see if it works. Probably being a bit thick here but what is PIP?

  • Hope the ablation is successful for you :o)

    A PIP stands for pill in pocket - a tablet you take only when you go into AF, rather than taking it every day as a preventative.

  • I was prescribed Flec 100mg BD plus 300mg PIP, but not told about the maximum dose, so on occasions I've had total of 4-500mg in 24 hours and I'm still here! My PAF is a lot better controlled now with the regular Flec (and 5mg Bisoprolol), and if I do get breakthrough AF (if I've had a night out an more than a couple of glasses of wine - a known trigger of mine), usually just an additional tablet of 100mg sorts it. We're all different though, have different triggers and so respond differently to treatment regimes . . . .

  • Hi,i am daily on flecainide and for me he work well till now

You may also like...