Hi everyone, I hope you're all doing well. I've had a rough couple of weeks as my PAF has ramped up considerably for no apparent reason. I was prescribed flecainide as a PIP around a month ago whilst I'm waiting for my ablation. About two weeks in I went into AF around 10am, which is unusual in itself as it's usually around 2am. Anyway, I took my first dose of flecainide which took effect after about an hour. Since then though I've had far more frequent episodes, even twice in one day. On average I usually go four to six weeks between episodes and I've now had four in one week. The flecainide is effective but I'm wondering if the increase in episodes and the flecainide are connected. I'll phone the arrhythmia nurse on Monday and let her know what's going on, but I'm not sure if I should contact my consultant.
Flecainide: Hi everyone, I hope you... - Atrial Fibrillati...
Flecainide
Hi Private Ryan,
Sorry to hear about your problem and understand it must be a worry.
I’m paroxysmal AF but have taken a hefty ( too hefty I think) flec as a PIP only once, last year, along with propanolol on advice from cardiologist, as i’d just come off bisop at the time, so I know what it can do - I reverted in about 2 hours at that time. I’m since fully back on the bisop, which currently seems to keep me in NSR, so I haven’t had to take flec again.
I’m afraid I can’t tell you if it is the flec that’s increased them ( perhaps others may have a better idea) but when you had the episode at 10am - had you already taken the bisoprolol very recently the same morning? I only ask as flec is supposed to be taken with a beta blocker, though I know some don’t, but I was told to. What dose of flec did you have to take as a PIP?
Also, when you had two attacks in one day, how much flec did you take and did you take it each attack?
Thanks Teresa. I take my bisoprolol at the same time every evening around 6pm, so no it wasn't at the same time as the Flecainide. I've been told to take one 100mg tablet of flecainide on the outset of AF and another after two hours, if the first hasn't brought me back into NSR. I can take a maximum of three in any 24 hour period. I wish this condition had more recognition, as it's very debilitating after an episode.😔
Hi Private Ryan,
Thanks for coming back - all I can add is what I would do if I was to get an attack whilst I’m on my daily bisoprolol.
I take mine every morning around 8am. If I was to get an attack in the late evening, which is what used to happen with me ( like you used to) I would now take another 1.25 mg dose of bisoprolol, but I’m only on 1.25 mg a day. I just feel I’d need to ‘boost’ it up. So when you had your attack at 10 am you hadn’t had any bisoprolol for 16 hrs.
I’m not saying this is what you should do and I don’t know if what I’m doing is right, as you’ve obviously been told what to take what and when by your EP/cardiologist. I know when I asked mine about doses and things, he said it was all ‘trial and error’ and there was no real science to it 😳 though when you’re having an episode, none of us want to trial things and see if it works or not 😳
I do know that flec can sometimes alter rhythms, especially if not taken with a beta blocker.
Everyone seems to have differing PIPs…I’m 5 ft 8 and 10 st 11 and was told to take 300 mg of flec in two separate doses half an hour apart, after waiting 20 minutes after the propanolol, or 30 minutes after bisoprolol. It was a bit of a palava & In hindsight, I think 300 mg is /was too much and I should have waited longer before I took the second dose, but at the time, you just want it to end. I felt really spaced out for hours after. I even double checked with the cardiologist about the flec dose and he said it was correct, though I still have my doubts.
Yes, this condition should get more recognition…I feel for you.
I agree it sounds like it could possibly be the fleconaide that has altered your episodes, based on what you’ve said, I wouldn’t know what you need to do though, but yes, I think you’d have to discuss with your arrhythmia nurse on Monday.
I hope you’ve got good and knowledgeable ones 🤞
300 is the MAXIMUM safe dose in 24 hours! Dangerous to exceed this.
Thanks WilsonD,
Yes, I know, which is why I am still quite weary of taking 300mg as a PIP next time. I suggested to him that it might be too much, especially for my weight etc and I take 200mg in future, but he said it might not work. 300 certainly worked last time, but I know it’s the max.
I don’t think ideally I want to take that much again if I can help it 🤞
I agree with you here. I dont think Ive seen anyone taking max dose as a PIP. Xx
I know…he also said that if I was to take 200 in two seperate doses, if it didn’t work, taking another 100 might not do it either, as too much time had elapsed or something and I’d end up having to go to A&E 😳 all seems such a complicated hassle! I’ll keep my fingers crossed I don’t need it for a while…Good luck with your continuing NSR by the way. 😊
X
All I can say is that I was told to take 200 at the same time... but of course follow ypur EPs advice. Yes its a darn nuisance!
I take 25mg of flecainide twice a day. My PIP dose is 50mg and then another 50 an hour later if necessary. The first 50 usually works. I weigh 160 lbs.
While we all react to these drugs differently, my guess is that most people take much more Flecainide than they actually need.
Jim
I’ve also been told to take 200mg along with 2.5mg bisoprolol - still a little scared of doing it for the first time. Coming off daily 1.25mg of Bisoprolol, have taken one every two days for a couple of days. Cross fingers I don’t plunge into A Fib.
I was taking 300mg Flecainide plus 2.5mg Bisoprolol as PIPs - but then I didn't take any daily dose of either. I started using 100mg Flecainide and 1.25mg Bisoprolol as PIPs, which initially worked but then became ineffective, so I increased my dose. Now I've had a second ablation and haven't had any AF episodes for 3 months.
Can I ask what PIP is? I’m learning. Recently diagnosed and over the months my Flec dosage has gone from 50mg Morning and night to 15g Morning and night. Now under EP
PIP is short for pill in pocket.🙂
The cardiologist did mention taking another bisoprolol now you come to mention it, but I didn't have any on me with the episode in the morning as I was at work. I'll make sure to have some on me and will do so next time. I'm on 2.5mg of bisoprolol daily although I'm male and larger at 5'10" and 14.5 stones. I really hope this is just coincidence, as the Flecainide has reduced the length of time I'm in AF considerably, from 6-8 hours down to less than an hour. However, the larger number of episodes probably negates that, if indeed that's the cause. The ablation can't come soon enough, as I'm a relatively young 60 and enjoy going to the gym regularly. Life wouldn't be the same for me if I have to give that up, as I've been very active all my life 🙁
Adding to my reply ,ablation for me for AF and Flutter 12 weeks ago,no issues afterwards,in NSR 100%. Fingers crossed. If you ask to go on cancellation list you might get in quicker. X
Hi Private Ryan,
I’m a relatively young 56 😊
It’s good that it stops them in an hour and I know how you feel as mine used to last 8 hrs or more.
Yes, please take the bisoprolol with you ( I think this why it’s called ‘pill in a pocket’ as it’s supposed to be in your pocket! 😊)
If it’s any consolation, you’ve done really well getting on a list for an ablation . I was getting longer episodes every three weeks last Summer, but because bisoprolol seems to stop mine (for now anyway), they won’t give me an ablation ‘until I’m worse’. I’d have an ablation tomorrow if I could, as I would love to get it off my mind and out of my life.
Hooefully, freedom is just around the corner for you 🤞
I've had so many false dawn's that I jumped at the chance when offered the ablation. I went teetotal almost 3 years ago and that had a pretty dramatic effect initially, but as it stands I'm often tempted to have a glass of wine occasionally. I think it's the uncertainty that's annoying, but I fully appreciate that there are far worse ailments that affect people every minute of every day. Thanks again for the responses.
Hi Private Ryan,
I totally understand - it’s a real worry and a real pain having this and everything that goes with it. I really worry about the future and getting older with it.
Well done in going teetotal - I have too sadly but not as long as you, just over a year now, as I was only diagnosed last year. I would love a glass of Prosecco ( or two) on a Saturday night 😀
I hope you get through the next couple of days….don’t forget to take that extra bisoprolol and hopefully it might curb the frequency.
Take care.
I haven’t read all the replies so this may have been covered. It’s very important that you do not exceed 300mgs Flecainide within any 24 hour period. I’m not medically trained, but as I understand it, if Flecainide is taken daily as a regular maintenance dose then it is important that it’s taken with either a beta blocker or a calcium channel blocker for the reasons given by Teresa. However, it’s not necessary if taken a a PiP, but if you are taking that kind of dose almost daily I think you should contact your Doctor. Do you know how long it will be before your ablation, when you contact your Arrhythmia Nurse and if it’s possible, why not make her/him aware that you could be available for a cancellation…….good luck
Thanks for the reply. Yes I'm taking Flecainide as a PIP and am aware not to take more than 300mg in 24 hours. I was told towards the end of July that I'd be waiting 4-6 months for the ablation, so I'm hoping it'll be before Christmas. I'll tell the nurse that I'm available for a cancellation, thanks.
I am 60 and have been treated for AF for over 10 years. I have had 2 ablations and whilst I had some improvement I remain on medication. I take 2.5mg of Bisop at night, and three doses of 50mg of Flec, morning, lunchtime and evening. I also take other medication for high blood pressure. My cardiologist told me years ago to take any one of the three doses early if I get an episode and this happens rarely but works within an hour or two. I had been on 5mg of Bisop for a few years but after having Covid my resting heart rate dropped to 40bpm which did not feel good. So my Bisop was reduced to 2.5mg and my rate is now nearer 50bpm at rest. Good luck with the ablation I do not regret having mine as I did see a reduction in episodes but it does seem there are no guarantees with AF of a complete cure.
I was diagnosed with PAF 6-years ago aged 50. I had an Ablation which resolved issues around the Pulmonary Veins but which then became present in the other Atria in the Crista Terminalis. Another Ablation rendered it inoperable. So, I have Flecanide as a PIP. Like yourself my PAF affects me around 3am. My EP prescribed 300mg only and which I take at intervals; 100mg and wait 30mins. If that doesn’t work, and it never does, I take a second 100mg and wait. Only twice have I taken the third and final. As soon as I take the first 100mg I take half of 1.25mg of Bisopro. I was advised taking more than 300mg in 24-hours could put heart into failure and you must go to A&E. I had been teetotal since first diagnosed but can tolerate the odd glass of white wine but never any more.
Hope that’s helpful.
Sounds like the introduction of Flecainide is stopping the AF but at the same time unbalancing the heart prompting more episodes.
I would seek an early appointment with your cardiologist (will probably have to be a private consultation if funds allow) and discuss your options. I favoured PIP but my cardiologist said it was too much of a roller coaster for the heart and put me on 100gms Flec daily, that didn't stop the episodes so we agreed rather than an ablation we would try a medium level dose at 200mgs, which has done the job for 8 yrs and counting.
Thanks everyone I really appreciate the advice. I went into AF again on waking this morning around 6am so took half a tablet of bisoprolol (1.25mg) and one 100mg tablet of Flecainide. It stopped the AF within 45 minutes and I feel fine now, if a little tired. I'm convinced these increased episodes can't possibly be coincidence so let's see what the nurse says tomorrow. I might ask if I can have another consultation given the dramatic changes I've experienced, but not sure if that's possible. I can afford to go private but I won't jump in just yet. Thanks again.
Firstly it doesnt matter whether you take the bisoprolol at the same time as your PIP Flecanide,as you are on a maintainance regime which will protect you from adding Flutter to the Arrythmia party . I was on flecanide as PIP for quite a while but then had to take as daily dose to ward off episodes. Nothing that I had done differently just AF got very keen on having a go.
It sounds as if it might be time to review meds.
Eventually I had several bouts of constant AF ( lasting 5 to 6 weeks).Drugs had stopped working. Ablation route seems to have worked.
Hope you get through ok!
I was on daily flecainide but my episodes were so infrequent that with the approval of my GP I cut the flecainide to use as a PiP. That has really worked well for me, but he said if your episodes start getting more frequent then we need to look at a regular dose again. It could be that you would benefit from that to keep your heart calm.
Flec is an anti arrhythmia and a pro arrhythmia. I was given 300mg Flec as a Pip by cardiologist, it worked fine a couple of times 3 months apart then my episodes increased in frequency and I took the 300mg 7 times in 9 days (stupid I know now!) and then went into severe ventricle tackychardia and I literally felt like I was going to die, couldn’t stand or sit up, went green, severe ache and throbbing pain in neck and throat, my hands nose and ears went icy cold and it felt like I was being crushed, ambulance crew carried me out of the house on a stretcher, blue light to hospital, my ecg in ambulance looked like a child’s scribble! Then as we arrived at the hospital I self corrected to NSR. After that I seeked out an experienced EP who was horrified that I was given 300mg as a pip and told me I could easily have gone into cardiac arrest during the VT episode. Now I just wait out my 4 or 5 AF episodes a year. And always, so far, self correct within 24hrs.Be very careful with Flecainide, it is not for everyone.
Totally recognition of this spent 10 days in ICU with Cardiogenic shock brought on by Flecanaide not clearing system it relies on getting pissed out my kidney function was low and ended up with too much in system get a blood test to make sure that your kidney function is ok Fleca can turn pro arryhmic easily
I take flecainide along with a beta blocker twice a day( 50 mg) and it has me a lot. I’ve been taking this for nearly a year.
I was also given Flecainide which caused more episodes, a known side effects for some people. After an ablation I had to reduce Bisoprolol to 3.75 once a day instead of twice but found I had AF at 4am so I now half my tablet and take 8.30am and 8.30pm and find this works. I think some beta blockers are short acting.
I had Flecainide initially and it caused pro-arrythmia in me, changed to sotalol
Just reading through all the replies it's obvious that everyone's particular needs are different. There must be a lot of guesswork initially on what's best for the patient, so all I can do at the moment is pass on my experience to the arrhythmia nurse and see what they say. I felt drained yesterday so I went for a brisk walk to see if I could shake off the cobwebs. I slept better and no AF thankfully although I'm fully aware it can strike at any time. Thanks again.
Hi Guys, this is really interesting, and some of your Flec stories are terrifying.
I'm 56, and have had PAF since 23. I've had manual cardioversion twice and another 4 Flec interventions when episodes didn't self-correct. I did take Fkec as a preventative for a while, but it didn't work and had other nasty side effects for me, so we reverted to having it as a PIP for when things go out of line.
My understanding when I took Flec routinely was that it was Flec and Flec alone that I was supposed to take - i.e. that it did not require Bisoprolol when taken in this form. I was told that it was only when you took your 100mg dose (repeated after an hour if ineffective) that you should accompany it with Bisoprolol? Effectively, if used as a preventative, that Flec didn't require Bete blocking, but if used as a PIP corrective, it did?
I suppose this is pretty academic for me anyway, as Flec doesn't work as a preventative, but I wanted to check the collective understanding about the two drugs in combo.
Your symptoms for being 'over Flecced' sound truly horrible. It does remind me of two of the episodes I have had, where that exploding neck feeling, accompanied by freezing cold forhead, hands and so on and grey palour was definitely part of my AF, before any Flec intervention.
It does seem that like many other drugs, Flec is one that we all react to very differently. For me it has worked, albeit sometimes slowly as a corrective, but never as a preventative, while for others the reverse is true. I also know of people who routinely take it as a daily preventative for years. For me, I managed about 8 months, but I had appalling and inexplicable 'Richard Nixon' sweats (very tricky, as I am a Financial Advisor, and that is guaranteed to make a client think you are a liar!), and a feeling of such utter desolation that to describe it as depression wouldn't do it justice. I came off, and was so much better as a result, with no more flutters than I had been experiencing on the drug, and it was still 5 years or so before my next aggressive AF episode. The answer is very definitely be very careful with Flec, as it is a nasty bit of medication. I'm much happier using it periodically, usually under supervision, than I would be having it in my system all the time.
Good luck PrivateRyan and you'll get there in the end.
Sam.
Thanks Sam. It looks like Flecainide is getting a mixed press which isn't unusual, as I'm sure there are also thousands of people for whom it's tolerated and helps to alleviate symptoms.
Following an ablation for PAF and 3 months of meds, I stopped taking them as planned but continued with Xarelto. The plan was for me to use Flecainide plus Atenolol as a PIP, but this didn't restore NSR. Rather, the Flecainide induced Atrial Flutter. It's good to see it works for many people.
The arrhythmia nurse said it's unlikely my increased episodes of AF are due to the flecainide, as using it as a PIP means it doesn't linger in the system. She told me to phone anytime if I have any further concerns, and she's also put me on the cancellation list for the ablation.
Hard to say, I am no doctor, but unlikely that flecainde an anti-arrythmic is tied to increased afib frequency (hopefully your afib professionals can clarify). Possible that your afib is intensifying? - Discussion with health professionals re: regular anti-arrythmics may be applicable while alson considering other treatments (e.g. ablation)
Hi everyone, I have one more bit of advice to ask. The PIP approach was recommended by the consultant as the gap between episodes of AF was 4-6 weeks. As they're now much closer together (several per week) I'm wondering if a preventative approach would be best. Should I go through my GP to discuss this or am I better speaking to the arrhythmia nurse? Thanks.
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