I have been very low profile of late because I had nearly two years free of AF - then it came back last Wednesday with a vengeance and refused to go away... This resulted in a trip to the doctor's and then A&E on Thursday because the rate was quite high, blipping up to 150+ bpm.
To cut a long story short, the doctors increased my bisoprolol to 10mg and added digoxin, which did not do the trick, and I didn't go back into rhythm until Monday evening. Tuesday, the cardiac team decided to change my meds to 5mg bisoprolol, from the old 7.5mg, adding in 50? of flecainide morning and evening.
My concern is that the consultant cheerfully said they'd have to do an ecg in a week's time because sometimes flec can put people into VF, not something I'd much care for it has to be said!
What has people's experience been with flecainide? Is it a good drug? I'm hoping this is a pretty rare side effect! The echo of my heart showed it seems to be in good condition, the consultant said.
Many people find flecainide a life saver, or at least a life enhancer. I only used it for about six months alongside atenalol ( it was a long time ago) as a pill in pocket to take when events overcame me. As soon as I saw my EP he switched me to propafanone full time which he preferred. The flecainide did seem to work for me as suggested.
I'm not sure abut VF but atrial flutter can be caused by flecainide which it is why a beta blocker should always be used alongside it. This is the manin reason for the ecg I suspect. I find your consultants comments cavalier in the extreme but at least you had an echocardiogram to check your heart is structurally sound.
My advice is to ignore these unhelpful comments and relax.
Hello my lovely - how are you? I’m still lurking here and just the other day wondered how you are, obviously you got the mind message!
Worked a while for me, then AF broke through anyway and then it left me with Long QT Syndrone so no more for me. It is a toxic drug, not as toxic as Amiodarone, but near that polarity.
Having said that - you know the drill - works well for many with no adverse affects but you would need to be regularly monitored with ECG, IMHO, as any signs of the more dangerous arrythmias would then be picked up immediately and you could discontinue.
When I first started on Flecainide I had to be constantly monitored - attached to an ECG. Anyone who is going to get VF will usually get it pretty quickly so personally I’d go with your EP’s advice as VF is rare but possible affect.
Alternative - get a Kardia and email the ECG’s? Which EP team are you with?
Lovely to hear from you too! Mind message received! I've just been a quiet lurker because I didn't have anything to report, good two years I had before this... Long QT is a nasty one and that does worry me. I'm sure my doctor will have thoughts, and I will make sure I ask her about a regular ECG. I don't have an EP team (welcome to Wales) that I know of. I'm not sure if the cardiologist I saw is an EP. It's all a bit mysterious! I wonder if I should ask my doctor...
Kept me pretty much out of afib for a year. EKG monitoring is standard a week after starting, or after a dose increase. Or at least the monitoring should be.
Just ask your ep if you can take an extra (PIP) dose, should you go into afib. This happened a couple of times to me and the extra dose converted me in 1-4 hours.
Also, give it at least 10 days, before you evaluate if it's working or not. I had a rough first 10 days -- extra arrythmia's -- and then things calmed down.
Lastly, I don't think it's a good idea to go on a no/low carb diet at the same time you're making a major medication change. Too much going on at once and not everyone tolerates low carbs. Do the Flec first and the diet after some time, if you really think that is the best way to lose weight.
Thanks Jim, you're quite right, it's a very severe change. And indeed a lot going on at once! I'm still getting over the shock of ending up in hospital like that (and a couple of really bad attempts to find a vein, you should see my arm... Or rather, you'd probably prefer not to!
Judging by this Forum I would say the majority find Flecainide works for them at least for a few years with some of those then reporting the effect wears off eventually. It continues to work for me after 10yrs on 200mgs with no known side effects and the record here is one member who has been on it for 30+ yrs.
I understand it is best first tested under supervision, I was in hospital when they tried it out on me. My cardiologist then assured me no accompanying CB or BB drug was appropriate as I had lowish BP & HR. I quizzed him again on this (the 3rd time!) at my annual check-up this year and he added the older you get (I'm 70 this year) the less likely Flecainide is likely to cause a sudden onset of rapid HR (sorry forgot the term).
I have always looked at Flecainide as something to buy me time to make a major improvement in my lifestyle choices, which I have done and continue to do; this may be the reason more than the Flecainide why I continue to be AF free. I agree with Jim though that cutting out carbs and other changes should be done gradually; avoid too many changes at once.
Thank you, those are really useful thoughts - I know what you mean, it's a bit severe just to cut out carbs all at once! I will talk it over with my own doctor, who's a sensible person. I have to go back next week for an ecg to check everything is going okay. I'm 65, so hopefully in the bracket where fast heart rate isn't going to be an issue!
I have been on Flecainide for 15 years with no problem. For a year or so I was on 300mg a day( the highest dose you can take). I had an ablation 6 years ago which was successful although they say I have a slight flutter so now just take 100mg a day.
It's lovely to hear from you again, though I'm sure you'd rather be getting on with a normal life than visiting this forum.
I took Flecainide for many years and thought it a wonder drug for controlling my AF attacks. After taking it for a short while (days) I had an ECG to see that all was well.
Years ago when my EP discharged me from his care (said the 3 ablations I had were enough, some people weren't helped by them and I was one of those people) he said for me to try and reduce my dose of 2 x 100mg. I got the impression he didn't like the drug. I did get it down to 2 x 50mg.
Anyway I was happily on them for many years and would sing their praises. Then I asked my GP if I could see a cardiologist as I was getting very weary after walking up hills (the town where I live is full of them).
The cardiologist was an elderly man (not my usual one) I guess he'd been called in from retirement to help with the backlog of patients. He was typical of a sweet old granddad and started asking me about ops and procedures I'd had over that last year. I wondered if he was confused, I was not used to anyone medical asking how I'd got on with other ailments. Anyway he took one look at my ECG and said, "Well you can stop taking that Flecainide for a start, as it looks like it's causing more problems than helping". I could just continue with my small dose of Metoprolol. He also sent me for an ultrasound of my heart which was fine, still had a slightly leaky mitral valve, but that was no problem.
The following month I had pneumonia and covid together, so I couldn't give a fair judge how I felt about not taking the Flec. My heart rate shot up crazily and I was in hospital for a while and then it took months for me to pick up again, but while there they changed my beta blocker to Bisoprolol. I have now managed to reduce my dose to just 1 x 2.5 daily.
For most of this year I have felt wonderfully alive, feel I have my normal life and energy back again. I do not sing the praises of Flecainide anymore. Yes, it may be good at reducing the heart rate, but how it makes you feel should also be taken into consideration. Trouble is we often think it's the AF that's making us feel odd and not our medication.
It's lovely to hear from you Jean! I'm so glad that you're feeling so well. I'm one of those lucky people who get on well with bisoprolol, my hubby (who's on it for high blood pressure) hates it, it makes him feel dreadful. The cardiologist yesterday was explaining why but I'm not sure I grasped it, it sounds as if people who are naturally calm (me) get on better with it. Weird, eh?
It sounds as if you did okay on the flec - I am due an ecg next week to check, is it, my Q-T interval? (I warbled nervously at him, 'long Q-T???' - that's not one I'd like to pick up!)
I guess each cardio has their own take on what tablets and how often/much you should take. Both cardiologists told me sternly to lose weight, and I suspect 'no carbs' will do that quite quickly! That's going to be a tall ask!
I often think that it's the medication that makes us feel weird. This is definitely true of my hubby. I'm just relieved that the echo suggested my heart is basically okay - the lady in the next bed had so much wrong with her heart, poor lamb! Plumbing issues (valves and vessels) rather than electrical though. I felt like a bit of a fraud being there with people who were so ill but I guess that the heart rate I was experiencing was no laughing matter...
I am just keeping my fingers crossed that weight loss and gentle exercise will help. The Lithuanian cardiologist would have made you laugh, the face he pulled when I mentioned exercise!
It's so nice to hear from you again and to know you're doing well. I've warbled on a bit myself now! Take care and do keep in touch.
I have told both EP and cardiologist that I am so fatigued and short of breath plus my toes are numb and generally feel awful. Could I try Flecainide as PIP, both said Flecainide would not cause those symptoms. Have not had AFib in months so guess Flecainide is doing it job but I only take 50x2 , asked if I could cut it to 1/2 x2, said no studies have been done to see if that works. I am thinking about trying without for few weeks. I also take beta blockers, have for years for rate control since I had a bad Graves Disease in 1969. I find doctors don’t like to be questioned, or so it seems.
GP's are not specialists, but cardiologists and EP's should be. I think people need to experience AF to truly understand just what it's like.
I would never have believed how it was Flecainide making me feel drained. I think if you suddenly stop taking it your heart may protest for a while. We are unable to give medical advice on this forum I'm afraid. Me - I'm bit of a rebel and have always tried what I think is best for me. Two years running I stopped my Flec around April time and went the whole summer with a perfect heart rate. Both times AF returned about October. The third year I tried and my heart wasn't happy at all so I had to give up.
The trouble with stopping Flec is you could have times when you're not aware that your heart is beating incorrectly and that could cause your heart to enlarge. I would never advise anyone what to do. My cardiologist could see that it was Flec making my heart behave as it was.
Atenolol 25 mg. Taken it for probably 30+ years. Use to only take half but after went on Fec he said to go 25 mg. I also take Eliquis. My BP stays very low except at the doctors office. Cardiologist had me take it for a month three times a day as he couldn’t believe it wasn’t high all time, when I gave it to him, he said are you sure your machine is correct as not what we get here., told him I had since my GP wanted to make sure is was White Coat Syndrome. He still write Hypertension as one of my diagnosis.
I take Flec as a PiP and I'm very grateful that it stops the AF usually within an hour......but I feel pretty ropey - tired & nauseous - for a few hours afterwards and I'm fairly sure that it's the Flec causing that. Consequently I'm not at all keen on progressing to taking it daily! I don't take BBs because my HR & BP are already quite low.
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Thanks - it's good to have that feedback! Some drugs really affect people - my hubby's badly affected by bisoprolol and I'm not. Weird...
I only take 200mg flecainide as a PiP after initially being prescribed 100mg a day. That means I am only taking it once or twice a year when I have an episode and I am quite happy with that, it takes one - two hours to work. Might be worth asking if you can use it as a PiP? You never know, it might be another couple of years before you have an episode again.
No. I am very fortunate as for some reason my episodes haven't increased since I was diagnosed in 2015. In fact, last year I only had one. I see no reason to have an ablation at the moment, everything is under control.
Flecainide seems to vary in its effectiveness and side effects from one person to another. I have been taking 2 x 100mg Flecainide for 9 years and have had no AF in that time.
It can cause other arrthythmias because of the way it acts on the cardiac cycle but in most cases that involves Atrial Flutter and not VF - which I understand is an extremely rare effect of Flecainide. (Torsade de Pointes)
The only side effects I have noticed are slightly prolonged QT - which my cardiologist is happy with - and short runs of Flutter which stopped once I changed from 1.25mg Bisoprolol to 2.5mg Nebivolol.
Best wishes with it - I hope you find it works for you - for me anything was better that frequent, debilitating AF.
I can't remember wen I started taking Felcainide. A good few years ago at least. I started out with it as a pip 50mg as needed then increased over time. I now take 100mg am and pm with 5mg Bisoprolol am. Occasionlly I do have an AFIB episode but I might then take another 100mg Flecainide and possibly another 5mg Bisoprolol depending on how long since my am dose. The AFIB then usually goes with 3-4 hours. I might slip into A Flutter after taaking teh Felcainide but is stops pretty promptly. Flecainide has been a game changer for me.
my cardiologist started me on Flecainide with no monitoring. (She did not know what she was doing and her comment when prescribing it was “that’s what an ep would do) 🙄. Needless to say I then opted out of her practice and got an ep. But when I started taking the Flec 50 x 2, it caused another arrhythmia and I don’t even know what because when I questioned the cardiologist she said to give it time. Well, I stopped taking it and saw an ep. He told me to take it as a PIP which I did and it worked like a charm every time. It put me back in rhythm within two hours every time. It was my best friend for a couple of years. I have since had a MiniMaze and haven’t needed the Flec since June 22 but while I took it it was brilliant as a pip.
Hi Eatsalottie, I sympathize with your plight! I'm another one taking flec as a PIP (150 mg when an episode starts, and it has never failed to stop it, usu. within 1 - 5 hrs--so we avoid the daily pills, which keeps side effects down). Plus I take 100 mg Metoprolol daily (50 mg breakfast & supper). If I eat small meals, I can avoid a lot of AF episodes. GERD is in there somewhere as a trigger. Too much oil/butter/greasy food or sugar also seem to cause it. But no one has said "give up carbs"! I'm a cookie & cake lover, & I've "trained myself" to enjoy 2 or 3 bites of that Boston cream pie in the fridge, instead of whole slices. At restaurants, I eat 1/2 of what's on the plate, chew slowly each bite 40-50 times (learned from a macrobiotic foods course, actually brings out the full flavour of food), & take the rest home. Believe me--I dropped 13 lbs immediately without trying, I didn't feel hungry, & I lessened my AF attacks w/ this moderation approach. Hope some of these ideas might help you! All good wishes, Diane S.
I rely on flecinade now, bisoprolol caused my heart rate to average 39, I felt so lethargic that the Dr took me off it completely. I take flecinade, 50g x2 daily and 1 extra if I go into AF, usually calms down in half an hour, personally I wouldn't be without it.
Unfortunately Flecainide gave me pro-arrythmias and my episodes escalated..Took myself privately to an EP and he swapped my bisoprolol and Flecainide to Sotalol, been on that now for 2 years. I heard Flecainide can do this
I’ve been on my flecanide for 6 months now. Slight Afib episode at the start which lasted literally 2 mins, with HR to 160+ momentarily, but on the whole I’ve had no real issues at all.
My only concern currently is that I’m given no additional monitoring at all from the GP.
Even my pharmacist asked if I’ve had a recent blood test every time I pick up the tablets, it when I raised this with my GP, I was just told ‘if you need one we will write to you’ 🤷♂️
Anyway, new GP now that I’ve moved to sunny Devon, and they want to do a full review of my Afib so we will see what happens!!
That's very concerning, I was told ongoing monitoring will be needed - our GP surgery does ECGs so I should get one regularly and I'm due one on the 13th at the hospital. I will keep my fingers crossed that your new GP is on the ball!
I have taken it for years, after my ablation I’ve been in just 50 dose, don’t ask why, I haven’t a clue, but yes I’ve never had any problems with it…in fact I saw it as my first line of defense for a few years!
Can anyone please tell me if Flecanide gave them a strange pulsing/heat sensation that started in their head and then spread down their entire body?
After the heat passes I have a weird “fizzing sensation” that seems to shake my whole body.
Landed up in A & E but they could nt catch anything on the ECG.
Have usually used Flec as a PIP, but started on a daily dose of 100gm in morning and evening 3 weeks ago - have felt awful ever since. I’m 68 and healthy in other ways, I’m really fed up now.
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