I’ve gone from no episodes of AF for months into persistent low rate AF since the beginning of February. I was taking 1.25mg Bisoprolol daily.
I saw an EP privately last week and he prescribed Flecainide 50 mg twice daily and Diltiazem- the latter as I have a suspicion the Bisoprolol was causing me breathlessness when walking. His hope was that the Flecainide might get me back in rhythm, if not he’d do a CV and hopefully the Flec would hold NSR.
I took my first Flecainide Monday morning. All was quiet for about 40 minutes, then my heart rate shot up to 130 or so and remained there for about 30 mins, then for several hours after I had a deep ache in my chest and felt like I was wading through treacle when walking about, other than that, it went well! I must be honest, I’ve chickened out of taking a second dose and instead, have focused on swapping the Bisoprolol over to Diltiazem. That has gone better thankfully.
I did have high hopes for the Flecainide but now I’m not so sure. I do have a moderate tricuspid leak and enlarged right atrium so was a bit surprised the EP prescribed it but he said that, as the left side of my heart is structurally sound it would be fine.
Anyway, I will be going back to the EP but was just curious to know if others have had similar experiences with Flecainide.
Thanks in advance.
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Threecats
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I found that flecainide actually promoted arrhythmias for me .
On one occasion the cardiologist , on the instruction of my EP , started IV flec immediately prior to a DCCV to see if I could be returned to nsr. No luck so was cardioverted electrically.
Assuming you didn't capture the arrhythmia on a home device like Kardia, sounds like you may have had a 30 minute episode of aflutter, Flecainide can do that and that is why you are taking the Diltiazem with it to prevent a very fast and potentially dangerous 1:1 flutter. Smart move not to take the second dose before speaking to your ep.
They may tell you to stop, go ahead, or go ahead with a stronger dose of diltiazem, or maybe switch you to another anti-arrythmic like Propafenone. A follow up 12-lead ekg may be in order and if you haven't had an exercise stress test prior to taking flecainide, not a bad idea. I was required to pass one before being given flecainide. Should you continue on Flecainide, periodic ekg's, including an exercise ekg after a few weeks might also be a good idea to make sure there are no adverse changes such as a too wide QRS interval or even more concerning changes.
I had a rocky first 10 days on flecainide and then smooth sailing for most of a year. That said, not crazy on being on that drug for life so am going to have an ablation.
Is the Flecanide you have been prescribed the quick acting PIP (pill in pocket) type or the slow release type (in the plastic capsule)?
Hopefully someone else can answer this, how quickly does the PIP Flecainide work, compared to the slow release Flecainide. I was told the slow release has its maximum impact 4 hours after taking, and remains in your system for approx 24 hours. I may have that wrong however, so if someone else can verify, I'd love to know the answer.
P.S. I should add that I was on both slow release Diltiazem and slow release Flecainide prior to having an ablation last September. I am still on the Diltiazem as my blood pressure is a little bit elevated, but after my 3 month post op review I was advised to stop the slow release Flecainide but given PIP Flecainide to take if I have a break out. I've had 3 short break through AF and the PIP converted me back to NSR within approx 2-3 hours. Hopefully it's still blanking period break throughs (been stress related each time).
If anyone can answer my question that would be great.
The Flecainide I’ve got here is in tablet form, so presume it is in the quick acting type - doesn’t say on the box. I’m sorry I can’t answer your question but hopefully someone will be along who can. Might be worth posting as a separate question if not, so more folk see it.
If you're in the UK it'll be normal release Flecainide as we don't prescribe the other type unless in hospital. The wading through treacle is not unusual to start with on Flecainide. Can also induce nausea and headaches. But it's effective for many of us. See what the cardiologist days. I never got the high increase in HR with it though it sometimes happened if I took an extra PiP during an episode. But never lasted long and always kicked me back into Sinus after a while.
Thank you for clarifying the tablet question Singwell and for sharing your experience, it’s much appreciated. I’m glad to hear Flecainide was helpful for you.
I take 200mgs Flecainide as a PiP and it (thus far) has put me back in NSR within 30 minutes each time. Without the Flec my PAF episodes were lasting 10-14 hrs. I usually don't take a beta blocker because my HR doesn't go that high. The Flec has worked really well for me - no side effects that I'm aware of!
Thank you for your reply, Jim. Stupidly, I didn’t think to capture it on my Kardia🙄 Next time - if there is a next time!
I’ve not had an exercise stress test so will certainly raise that with my EP when I next speak to him. I get where you’re coming from about being on the drug long term . To be honest, if l can crack the problem of breathlessness when I walk, then I wouldn’t be concerned about being in persistent/permanent AF as it isn’t otherwise bothering me. There’s also a question mark as to the success rate of an ablation in my case, due to underlying health issues, so not rushing to go down that route at the moment .
Thanks again for the reply and I wish you well with your upcoming ablation.
Hi Threecats , I am afraid what is a wonder drug for some people keeping AF in check doesn't work for everyone.
I tried Flecainide daily a year ago for a couple of months and it added to my problems with longer more frequent episodes of AF and other side effects so having given it a fair trial I stopped it and returned to my usual pattern of episodes.
In January with my episodes increasing even more, it was suggested by the arrhythmia nurse that I try Flecainide again and the side effects were even worse the second time with an even longer episode of AF lasting 10 days with just a few hours break, loss of balance and wanting to faint 3 times in 30 minutes on one occasion so I stopped it again .
I would urge anyone prescribed Flecainide to give it a fair try, AF treatments seem to be try it and see what works for you .
In spite of other health issues I am now on the list for an ablation, I too am breathless all the time .
Goodness Doodle, I’m sorry to hear what you went through with Flecainide. You certainly gave it a good try. As you say, it’s very much a try it and see approach with these AF drugs. I’m sorry to hear about your ongoing breathlessness and hope you get a date for your ablation soon.
My AF journey seems to be leading towards taking daily Flecainide. I am not at all keen but it is to try to control intermittent episodes and now frequent ectopics. (I understand these are not dangerous but they are most unpleasant and a new development).
I was on a 2.5mg daily dose of Bisoprolol but this made me very fatigued and sluggish. On top of that it badly affected my mood and I put on several lbs in weight (although I know some people would dispute that Bisoprolol could have that effect) so I came off it.
I am seeing the cardiologist on Monday and just don’t know what to do as I know he will suggest once again that I try Flec. When I read very useful posts like this it underlines my reluctance. Why are docs so good at doling out prescriptions and so bad at explaining potential side effects!!
Sorry for the long post but I am feeling frustrated and upset, I just want my life back and to be able to do all the things I want without having to worry about this blooming condition 😡 We want to go skiing in a couple of weeks and I am terrified of having an episode halfway up a mountain!!
Does anyone have any positive things to say about Flec or suggest alternatives I could discuss with the cardiologist?
This forum is so helpful, AF is one of those conditions where people don’t understand how horrid episodes make you feel unless they are fellow ‘sufferers’ so thank you to everyone!
It worked very effectively for me ,after an initial error at the hospital who first prescribed it after a TIA. Didnt give it alongside betablocker = flutter instigated.Worked as a PIP, 100mg then if still AF after 2 hours,another,for several years.
Then as maintainance dose 50mg x 2,again good for years,then AF got upper hand again 100mg x2.
Eventually had an ablation after failed to hold AF off enough.
Still on dose afterwards until review in May,although in NSR. My EP wants to thoroughly retrain my heart he said.
I have had no issues taking any of the doses above,hard to tell if my bouts of dizziness on bending or walking uphill is Flec Bisoprolol,Losartan or Furosomide! The usual suspects..!
The forum is certainly a wonderful resource for sure. I’m sorry if I’ve added to your worries Sunnyday. I know there are lots of folk on the forum who take Flecainide very successfully, as Wilsond has done.
I hope you are able to get something sorted with your cardiologist and enjoy your holiday.
I really value peoples’ varied experiences with all of the meds and procedures available. I was wary of Flec before and your post has by no means made it worse.
I really hope you get things a bit more sorted and start to feel better very soon.
How did EP leave it,has he/she arranged a follow up check up or way of letting them know quickly of any issues?So it wasn't AF do you think? I have not had this feeling with flec.
I think you are wise to pause it until you get to let EP know.
Thank you for your reply. At the moment the EP said he’d transfer me to his NHS list but goodness knows when I’ll see him again under that! I was going to give it a little longer to see how I get on with the Diltiazem and then email him and, if necessary, stump up the fee for a follow-up consultation.
As for the feeling itself, I’m in AF all the time now anyway, it was just the speeding up thing that took me by surprise - got to around 130 bpm before dropping back gradually. As I said in my reply to Jim, I stupidly never thought of capturing it on my Kardia 🙄
Anyway I’ll run it past him and see what he thinks.
I’ve been on flecainide tablet twice a day since 2018 and I’ve found it a miracle drug and touch wood no side effects.
I also have a hole in the heart (consultant said possibly caused during my ablation), triscupid and mitral valves regurgitation, pulmonary hypertension, diastolic dysfunction, enlarged left atrium, but no one has said I shouldn’t be taking this.
I was prescribed this when I had been admitted to hospital so when I read by so many if our forum friends that it shouldn’t be taken if the heart is structurally unsound I do worry a bit, however it mostly keeps me in nsr so I try not to worry
I am also on 1.25 bisoprolol despite a now low heart rate since the ablation and apixaban
Thank you for sharing your experience, Pat and also sharing that you have some structural issues with your heart, too and are ok on Flecainide, that is very good to know.
It definitely is a case of try it and see, Threecats. Sotalol did exactly the same for me and I had to stop it after 4 days.
I was put on Flecainide 9 years ago together with Bisoprolol but the breathlessness was horrendous. A change of beta blocker to Nebivolol worked wonders and I have been AF free in all that time (9 years). It shows how different drugs are and how different we are - Flecainide has been a wonder drug for me - so far.
I hope you can find a solution and aren't put off by your experience. Best wishes.
Thank you Finvola, it’s really interesting to hear that your breathlessness was sorted by a change of beta-blocker. I’ve gone onto Diltiazem for that reason and, although it’s only been a couple of days, think it’s helping with the breathlessness when I walk. The only trouble is that it doesn’t seem to be as good at controlling my heart rate. Currently my daytime resting heart rate is 90, although it drops to mid 70s at night. Will give it a couple of weeks to see how things settle but will see if I can’t try a different beta-blocker if not. As you say, it’s all trial and error but 9 years AF free is fantastic! Long may it continue for you!
Thank you Threecats. I couldn't tolerate Bisoprolol at all and, as I was new at the AF lark, it took me to find this forum to even know about Nebivolol. Nebivolol is a cardiac-specific beta blocker and doesn't act on lung tissue in the same way as Bisoprolol. This makes it suitable for some asthmatics and, certainly for me, it was a real relief.
Hello Three Cats. Newbie here, I was on 2.5mg bisoprolol daily, felt dizzy all the time, like walking through treacle, almost as if I was just missing a couple of gears. And Afib events kept happening. Three months ago I was moved onto 1.25mg bisoprolol plus Flecainide 50mg twice a day (and I stopped eating anything at all within four hours of bed, which seemed to be a trigger) and it’s all been good, I’ve been in NSR since, dizziness etc gone. Everything I read tells me that the Afib isn’t gone, and will be back, but the Flecainide has been good for me - so far! The fact it worked for me - so far - doesn't mean it will for you, but there's hope....
That’s really good to hear, Bear, thank you for sharing your story with Flecainide. That all sounds promising and I do hope it continues to work well for you. Good idea about not eating anything for a while before bed , too.
I took flecainide for about three months when it was working well but it then caused atrial flutter so it was stopped, they stopped and now just have it as a PIP. A friend takes it daily and swears by it. We are all different with our same problem! Take care 🦊
Thank you for sharing your experience Bingofox. As you say, we are all so different in the way we react to these drugs. I don’t think living alone when trying a new drug helps much in my case, either, as I’m an anxious type by nature 🙄 Anyway, onwards and upwards as they say!
Lol! That's the one - waited until Monday to take the first dose - didn't fancy an A&E trip over the weekend! What are we like!😂
Hiya Threecats,
TBH, I have never taken Flec, nor could I be persuaded to. I had trouble with Bisoprolol (5mg) when first put on it in January 2010. By April of that year it was causing me full flow, random nose bleeds. I was prescribed it by my Cardio Consultant when he diagnosed and started my treatment for AF. It was prescribed to be taken in the morning.
Saw my GP who prescribed me to take it at night along with other night time meds. I have never had a nosebleed since. Ever AND the Bisoprolol has done a brilliant job of holding my HR at around 64 to 67 daytime resting HR. Since taking the Bisop at night its been great.
Thank you for your reply. It is surprising how timings etc can affect these drugs, for sure. I’m supposed to take the Flecainide twice a day but want to speak to the EP before taking any more, given my initial reaction. I had swapped the Bisoprolol for Diltiazem as the Biso seemed to be adversely affecting my asthma. Unfortunately, the Diltiazem hasn’t done a very good job of holding my heart rate steady - got stuck at 145 for quite a while yesterday, so back on the Bisoprolol! Exciting times🙄
Hi TC ...... by the way, love your black cat picture, he/she looks young and mischievous 😂
I am indeed fortunate that I can tolerate Bisoprolol (5mg) so well ... it must be a total nightmare if you don't, or any drug for that matter. My surgery now employs a Surgery Pharmacist ( as a member of surgery staff as distinct from a member of the adjoining pharmacy staff). From my dealings with her she sounds thoroughly professional and knowledgeable. Hope you can eventually stabilise your heart rate. Over the years it has been a big help for me.
Ah yes, that’s my “kitten” - well, she was 11 years ago! Still acts the baby though! I adopted her along with her mum and auntie - think the cat shelter saw me coming😂
You make a good point about the surgery pharmacist, thanks John. I’ll see if I can get an appointment with her on Monday. It is a shame about the Bisoprolol as it does a good job of lowering my heart rate. I gather from this forum that Nebivolol might be better for asthmatics so will explore that option with the pharmacist.
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