I need to stop taking flecainide. I do not agree with my doctor's instructions on how to do it. I want to go slower to avoid complications. Not long ago I read a post from someone who did it the way I want to do it, but I forgot how this person did it. I tried to find the post but was unable to do it. Could someone please help me.
Cloudday
I just immediately stopped taking Flecainide as advised by my cardiologist. I felt so much better without them and right away had a lot more energy . When I had my next ECG it showed my heart beating so much better. Flecainide was causing more harm than helping.
Jean
Thank you, Jean, I read your post a while back. I had the WMM last November. Immediately, after the surgery I was off Eliquis because I had the atrial occlusion and off Valsartan because after surgery, my blood pressure was so low, and they had a hard time increasing it. It has been almost three months, and my blood pressure has been fine. As per Doctor Wolf 's nurse, the instructions for weaning flecainide when I am 90 days from surgery are: decrease flecainide to every other day for two weeks, then stop the flecainide. So, if you stopped it immediately with such positive results, I probably will be fine following the instructions given. From all I have read about flecainide, I am truly, truly afraid of it plus my desire for a successful surgery is so big I do not want to do anything interfering with it. I am grateful to you. I read all your posts. Be well, always.
Cloudday
Just do what you feel is right for you. I can't remember now but my heart may well have played up a bit after I stopped the Flec, my memory is dreadful these days.
It's great to hear that the WMM has worked for you, please keep in contact and let us know how you get on. Do what Dr Wolf's nurse has advised.
Jean
Thank you, Jean. I'll follow their instructions to the T. Doctor Wolf kept me on flecainide because he wanted my heart to be peaceful during the blanking period. After I stop the flecainide, I hope everything will be ok. I will be in contact to let you all how I get on. Be well.
I hear this from people about being afraid of Flecainide… I’ve been on it for 5 years now, never been a problem for me at all. I go to the gym 5 days a week, hike trails every week, and have been in NSR the entire time on it! This drug does affect some adversely, but for me it’s been the best thing that’s happened to me since I was first diagnosed 30 years ago. I only wish I had tried it sooner!
I agree, I was having PACS that came and went, but the episodes were getting worse. With Flecainide I have a few a day and am in NSR 99.999%. I had side effects on statins, bp meds and beta blockers, but flec has been easy.
Cool… can I ask, are you talking Diltiazem also? My doc wants me to take this with the Flecainide so I’m considering this, just wondering if everyone else in Flec is doing the same?
For me personally, i have to do one or the other. I had an issue with beta blockers knocking my bp too low (on occasion) and I'm not sure if diltiazem, a calcium channel blocker, would cause the same issue. I have a weird situation where my BP is high, but sometimes while relaxing, BP meds cause me to almost faint just sitting in my easy chair. Most docs do have their patients take flec with a beta or calcium channel blocker. My resting HR is in the lower 60's.
I had the same experience as you. So much better immediately after coming off Flecainide
Exactly the same for me Jean. I stopped immediately as my consultant said it was safe to do so . My heart beat was reading 32/33 at times so dangerous. Felt so much better since stopping but to be fair my Atrial Fibrillation has risen from 4 to 33. But no worries yet lol
I came off immediately with no issues - it can be a bit of a difficult drug feel much better off any arrhythmics
Hi Cloudday.
I'm the same as Jean and dmac. My cardio just told me to stop - I didn't have any problems in doing so.
Paul
Paulbounce, thank you.
There should be instructions in the packet which cover this topic. Alternaively, discuss it with your local Pharmacist to be sure.
Throw the pills in the toilet (or loo or lavatory). Flush said ablution facility.
No medication should ever be disposed of down the toilet; I thought the terrible effects of doing that were so well known nowadays that it was a thing of the past!
No!!! Take them back to the pharmacy. Never flush anything down the loo except poo and wee and paper tissue.
Thanks, Jajarunner. I did not know one could take back meds to the pharmacy.
Having preached all that, last time I took a sack of discontinued meds to Boots the miserable woman made a right fuss! It's not like I was handing in street heroin or anything. If anything that.might have been easier!! 🤣
My doctor also said stop overnight after being on them for 3 months. I was too cautious and at first halved the dose and went a week to see if any reaction... then went one a day for a few days then 1 every second days for a few days then stopped.....
Many years ago I was on Flecanide in fact first drug I took, I was then advised to take Sotolol instead so stopped the first for 48 hours then onto the new drug with no problems. If you are under a Cardiologist then listen to him/her, if its the GP and you are not sure of their advice ring the Cardiologist's secretary and ask the question as the Cardiologist knows best, alternatively ask your Pharmacist.
Still haven't had the nerve to reduce my 200mgs/day despite going through an unsettled arrhythmia period after 10 calm years. My cardiologist just says reduce it and you will get more AF, dodging it being the cause.
If I try a reduction, it seems logical to me to do it slowly (not to shock the heart) as although most medics seem to say just go cold turkey, I have not read any reason why this should be advisable in preference to a slow reduction.
I refused to take flecainide in the past after all I'd read and heard about it - I'm a glass half empty person ! The cardiologist put me on it whilst in hospital after my ablation at the end of September, 50 mg twice a day. Almost immediately I felt great and have done ever since. But .....had my post op appointment on Monday and was told to stop taking flecainide . Reluctant to do so but I have done. I asked about reducing slowly but was told no need on such a small dose.
Thank you, LizLancashire. I did not know 50 mg is considered small dose.
I think it's the lowest dose anyone is prescribed from reading previous posts on here.
Thanks, LizLancashire.
Im actually on 25mg twice a day and had weaned down to 20mg. Is it helping me dry out of AF or is it other stuff I’m doing to support wellbeing? I’ll stay on it for the near future and see as I have no side effects
I had no side effects either from being on it. I felt great partly I think to successful ablation without tamponade as previously. Must admit I feel more nervous now that afib might kick in again without flecainide support but will just have to hope ablation was enough to stop future episodes.
you just have to believe your ok and be mindful of your AF triggers. We don’t often pay close enough attention to our triggers.
My episode last week I thought and thought and remembered I also had a bad cold sore also known as HSV virus. I thought back and remembered I also had a cold sore same time as AF episode a year ago. I found a huge study showing that there is significantly higher chance of going into AF if you have HSV than those with no HSV. Ratio of 1.6 to 1.0 So pharmacist suggested daily lysine for prevention of HSV
That's interesting. I used to get cold sores but that was before I was diagnosed with AF. I put them down to work related stress. Lysine certainly helped. I haven't had any since I retired. I'll think positively.
thanks
Was on for 3 months post ablation and then just stopped the twice daily dose (BID) over night. Needed to keep using as PIP for another 4 months.
I came off 200 mg over four weeks - am/pm 100/100, 50/100, 50/50, 0/50
it may have been me. Not that I’m going to be much help now, but I’ll try.
I was told by two different cardiologists different things. One said please yourself wean off them or stop straight away. Then my GP said he was on flecainide and after an ablation to stop them and he did it straight away just stopped
I had an ablation for Aflutter in 2017 but it wasn’t a success hence the bisoprolol flecainide snd apixaban
I was worried as I had been on them for 7-8 years and I wondered if it would be a bit of a shock to my heart to stop suddenly. So I took half in the morning whole one at night for about 5 days. Then for snother 5 days half morning snd night. Then half st night for about another 5 days then stopped.
I didn’t notice much difference to my heart for about another week then my afib started up again with a vengeance
So back on to cardiologist and he said restart the flecainide “if I want to although as I was now in permanent afib and heart failure” he didn’t see the point of ingesting a chemical which wasn’t doing any good.
Anyway I did start them again and for a little while I felt better. Then afib snd fast heart rate started again and my poor pacemaker (which as you probably know is to stop the heart beating too slowly) trying its best to keep rhythm
So GP (couldn’t get an apt with EP) then suggested I stop the flecainide straight away, but in view of the past problems I had I got on to jean and she said she stopped straight away and felt much better as the flecainide was causing her to have more arrythmias.
I have stopped the flecainide now for over a week, but unfortunately I don’t feel any better, possibly worse. I can’t get hold of my EP he is on holiday likewise my normal GP so I have another appointment with a different GP this afternoon
Having said all this, the general census of opinion from doctors and jeanjeannie is to just stop.
Sorry this is such a long screed
Hope you feel ok whatever you decide to do pat x.
I just stopped after taking it for ,12 years, for 10 of them at 300mg a day. My consultant said to just stop. By chance I saw a very knowledgeable about AF GP the same day who told me to just stop, so I didn't take any more. That was about 8. years ago. Just stopping had no effect.
I was on Flecainide for about 5 years (150mg/day). After my ablation I weaned myself off gradually. I found that each time I reduced the dose I got an increase in ectopic beats so I waited a few weeks for my heart to adjust before reducing dose further. I used a pill chopper to cut my uncoated tablets 50mg in 1/2 as required. Took several months in total.
Your experience is very similar to mine… I’ve been on smallest effective dose for 5 years after last ablation and no Afib for that entire time. Doc suggests weaning off but I’m kind of reluctant… have you been in NSR since you went off it?
Yes, still in NSR 2.5 years after the ablation and about 2 years since I stopped regular Flecainide. I still carry Flecainide and Apixaban to use as PIP if needed. I'm getting more ectopics (PVCs) these days, but getting used to them. I'm hoping I don't need to go back on Flecainide because it gave me worsening tinnitus and possibly some peripheral neuropathy.
I have just stopped too. I was worried so I cut down to 1 x 50mg on a night for a week then stopped. I am getting a little more ectopics and short run SVT's but I was getting them on 100mg twice daily last year so dont think the Flec stops them.
Why do you need to stop taking it? I ran out of mine accidentally and my heart was fine without it for the two and a half days until my husband could pick up some more. I had reduced my dose to 50mg in the morning and 100mg at night and it made me wonder if I could manage without it or go back to just having it as a PiP though that might be a bit scary. As I have chronic fatigue too though, I spend most of the time resting in bed and you might be more active and as we know, we are all different. Good luck, whatever you do.
I think my EP said Flecainide stays in your system for a week
Thank you, Vonnegut. I, have to stop it because I had the WMM surgery. I was kept on it because the doctor wanted my heart to be peaceful during the blanking period (90) days. So, God willing, when I stop it that will be the end of medications for me.
Sorry but what surgery is that?
It is called the Wolf Mini Maze. It is done in Texas and in Japan
And achieves what?
It stops Afib and with the atrial occlusion, no need to take anticoagulants or heart rhythm medications.
Do it however you like. Gradually reducing the dosage isn't bad. Halved my dose for awhile, then took it every other day, etc. Tried to ween once, back when I was having relentless afib, and had an episode. So went back to my dose. Later, tried weening again and made it to zero and stayed there. Good luck.
Thank you, FitnessGotFibbed
I shudder to think about all the people who will miss out on having peaceful sinus rhythm due to all the negativity around flecainide on this forum.
I think Flecainide is great! It has virtually put an end to episodes of AF for me and fortunately, my heart even behaved very well without it for several days when I ran out of it!
This is nice to hear. 100 mg of flecainide daily has reduced my ectopics (PACs) from about 20,000 per day to 1000.
Well, John3333333. I am an antimedicine person for all the side effects they cause. First, I was prescribed amiodarone. It kept my heart rhythm well, but it started to affect my eyes. Cardiologist then said that it could be affecting more organs as well. He prescribed Flecainide, it kept my heart rhythm well too. But in November 2024, I had the Wolf Mini Maze with atrial occlusion. Right there and then I did not take Eliquis and blood pressure med. Was kept on the flecainide during the blanking period. Now is time to come off it.
I would encourage you not to be 'antimedicine' - surely analgesics and/or antibiotics have been beneficial to you in the past?! I would also recommend listening to medical professionals when it comes to stopping and starting medications. I also feel I should point out that scarring of the heart, whether standard ablation or mini-maze, to prevent/reduce AF often has side effects too.
Thanks
can I ask, are you taking Diltiazem also? And if so, are you going to go off that also?
I do not take Diltiazem.
I was on 50mg twice a day. Was told to go to 100mg. Heart was more rapid and pounding after the increase. Decided to go down to 25mg x per day. No difference in frequency of AF but feel some episodes are stronger or a little more intense. The big difference is when converting to NSR. On the stronger dose my heart would pause for a few seconds. Felt like I was being turned upside down. Don't seem to have that anymore. Good luck.
Thanks
Weaning off Flecainide
Coming off Flecainide
Since coming off Flecainide
Flecainide
Flecainide
