Flecainide

[Mark41]

Hi! Been on Flecainide for two weeks... Feels like heart failure!?! Struggling with AF on and off for a couple of years (I’m 43) was hoping to settle things down then do an ablation but I think this Flecainide has hit me like a bus, has anyone else had a bad reaction to it?

[Hidden]

Hi Mark, sorry to hear about your struggles with Flecainide. I can relate! I wrote a post about a week ago about my own adventures with it. Here's what I know:

I'm taking 100 mg Pill-in-the-Pocket, so only when an AF episode starts. It generally cuts off the episode in 4 hours. Sometimes after 4 hours, I'll take a 2nd 100 mg. Usually the episode stops shortly after that 2nd dose. I'm always relieved for it to end, but sometimes I have that lingering fatigue from having more Flec in me.

My EP recently suggested I take 150 mg at the onset of an episode in order to cut it off sooner. I tried that, with awful results. The episode kept going...100mg more at hour 5. It lasted some 16 hours, with stronger symptoms.

I'd never been told anything about side effects of Flec, but learned from research and people here at the forum that at higher dosage, Flec can actually cause the symptoms we're trying to stop. I'm certain that this is what happened with me.

I've learned so much from this forum, in particular how nonchalant doctors can be in prescribing these very powerful meds. I've yet to encounter one who digs into getting the dosage right, either with thorough discussion up front, or follow up along the way.

I'm sticking with 100 mg Flec and so far so good, with the occasional 2nd dose after 4 hrs.

I recommend that you follow up as soon as possible with your doc about the dosage. Best wishes to you!

[Mark41 in reply to Hidden]

Thanks Nella, I am realising more and more how important it is to take ownership of these matters and do your own research. I was told it was considered pretty much side effect free and having had no problems with bisoprolol, digoxin, amiodarone plus a few others over the last couple of years, I’m amazed how adversely it’s seems to have affected me. Thanks again and best wishes to you too

[Hidden in reply to Mark41]

Hi Mark, my experience has been that my docs start from the place that "this works for most patients," without mention or concern about side effects. They focus on "most patients" and assume I'm one of them and so it will be fine. And as for side effects, it seems that in their mind, one should just put up with them as the price for the "good" that the drug is doing.

I used some other drugs early on and did end up pushing back a bit on Propafenone, which I hated. I was really sick in general and just didn't know any better back then.

But after really suffering from the reaction I had to a steroid cream prescribed by my now former dermatologist, I learned that I simply have to speak up.

In her case, even after I repeatedly told her that I was suffering greatly from the steroids, she kept repeating that it should work for AF patients. It was downright chilling to note how firmly attached to this concept of how the drug should work she was, rather than maybe dealing directly with me, the sensitive human in front of her. To her credit, she did eventually get it, but it was quite a lesson in the power of that particular mindset and that I must bring up my concerns at the outset and not count on the doc to do so.

I hope your doc isn't that stubborn.

I've also been "spoiled" by my acupuncturist and homeopath, who tweak herbs/remedies with each encounter, and really dig into finding the right balance for me. They actually guide me more in terms of the Western meds; then I go back to my doc to discuss what I've learned and ask about dosage or med changes.

"Integrative" medicine at its finest!

[Mark41 in reply to Hidden]

Thanks Nella and that’s really interesting about your acupuncturist and homeopath. I’ll have a look at that too

[Alpaca555]

Hi Mark... I struggled with flecainide and it didn’t much help me when I got af episodes. So, now my ep has taken me off flecainide and I’m just on Bisoprolol 2.5mgs once I get an af episode. It seemed to work it’s magic in about 3 hours - let’s hope it wasn’t a fluke! Yes, I read on the leaflet that comes in the box that one of the side effects of flecainide is arrhythmias... how crazy! 🌻

[Hidden]

Yes. I took it only once, p.i.p., and it converted an episode of AF 90 bpm to atrial flutter 150 bpm, a well recognised problem.

With you having tried Amiodarone and Flecainide would an ablation sooner rather than later be a good option for you? Are you taking an anticoagulant?

[Mark41 in reply to Hidden]

Funny you should mention that! I was in sinus rythym for about 6 months and my cardiologist gave me the all clear ie heart function recovered and no need for anti-coagulation. Then my heart suddenly started racing and out of rythym and I ended up in hospital with blood clots in my kidney and spleen. Not nice but I was lucky really. The Flecainide was supposed to just help settle things down now for a couple of months and see where things are before an ablation.

[Hidden in reply to Mark41]

So I guess that would be yes to the anticoagulants ? 🙂

[Mark41 in reply to Hidden]

Errrmmmm.... yes 😄

[jeanjeannie50]

Hi Mark, what dose of Flecainide are you taking? If its 2 x 100mg, then I wonder if you would have been better starting on a lower dose like 2 x 50mg to get your body used to it. I would have a chat with your GP today if that's possible.

Flecainide doesn't suite everyone and can actually make AF worse in some people.

Jean

[Mark41 in reply to jeanjeannie50]

Thanks Jean, did 2 x 50 for a week then upped to 2 x 100 last Friday, will do 👍🏽

[CHRISAF18]

I take 50mg x 2 that was prescribed from the off not as pip but every day seems to managed symptoms well plus bisoprolol 5 mg so I sticking with it. Go back to see your cardiologist not GP would be my take on it. Best wishes

[Aqua_1 in reply to CHRISAF18]

I'm taking the same dosage as you and 4 months later I still get very dizzy. It keeps my AFIB in check though. My EP has suggested I cut down to 25mg twice a day but it worries me that with such a low dose it might set off my AFIB again.

[CHRISAF18 in reply to Aqua_1]

I understand how you feel just don't want to rock the boat and end up in hospital. Not easy is it 😯

[wilsond]

It went me into atrial flutter after one week.I was then given bisoprolol again as well as flecanaide to counteract this..and put in 200 mg a day.After a while,felt both meds were too strong for me,have reduced to 100 mg a day and dropped the bisoprolol..on medical guidance.So far ,better all round,not so exhausted and had strong muscle pains in legs.I was told it takes 2 weeks or so for us to get used to new meds..but there are a lot of people on here that can't tolerate flecanaide.

Best wishes

[Hidden]

Diagnosed at A&E in July after an episode of fast AF which reverted itself after about 4 hours. Given Bisoprolol 1.25 to take once daily but incredibly dizzy, HR only 42-44, postural hypotension, and desperately fatigued - couldn’t function at all. GP told me to stop Bisoprolol and wait for cardiology appointment.

Then found myself on no treatment and not anticoagulated. Got very scared so saw a Cardiologist privately who arranged an echo & 24 hour monitor & prescribed Flecainide 50mg & Apixaban 5mg both twice daily. Reviewed after 2 weeks to check ECG not adversely affected & given further advice that if breakthrough episode occurs.

1. Wait an hour to see if it reverts on its own

2. If episode continues take another 50mg Flecainide as PIP

3. If still no improvement after another 4 hours, go to A&E

So far ok & haven’t had more episodes. Still having dizzy spells most days but I was having these before going on treatment. Going to have 7 day event monitor at some point (back in NHS now) to try to track down the reason for the dizziness.

Would definitely recommend a private appointment if you can afford it to speed up the diagnosis and treatment.

Currently my main symptoms are palpitations which go on for hours, though I seem to be in normal rate & rhythm, odd feeling in my chest (not pain, tightness or pressure) fatigue some days and the dizzy spells most days.

Early days on Flec I was much more tired, dizzy, nauseous, headachy and palpitations were more frequent and heavy. Been on it for over a month now and feeling much better. ( I am female mid 60’s).

[Mark41 in reply to Hidden]

Archie, can’t believe you were left without anticoagulation! Thanks for the info

[nikonBlue in reply to Hidden]

hi, Liked your 'steps' 1-2-3 and basically that's what I do except I usually just go to bed if it's lasting more than 4 hours and hope that I wake in the morning, if I get to sleep in the first place!!

I'm on 150mg morning and evening of the lovely Flecainide and I always carry extra 50's in case I need to take one which I often do. I was told all I could take would be that extra 50mg in any one day but I'm not so sure now and will need to check.

I'm also taking cancer medication and the side effects of the cocktail of pills can be intolerable at times so I'm never sure which side effect is caused by which medication!!!

Not easy eh? Hope Mark41 gets things on an even keel soon!

stay well all,

Blue

[RichMert]

Every evening. The drug sent my heart into a really strange rhythm. Could only stand it for a couple of weeks. I believe it is normally used as a 'pill in the pocket' which would suggest it is fast acting however, it has harsh side effects.

[Jeff8288]

I have been on flecainide for 4 yrs now. Was prescribed after my third failed ablation. Sorry your having problems with it. I have had no problems.

[LiftingYogi]

I have had similar experience with Flecanide & am now waiting to see cardiologist again. As you’ve read it doesn’t suit everybody.

[Mark41]

Flecainide free for 36 hours and woke up feeling so much better today. Pulse halved to 60 and sinus rythym back after over a week of pinballing around. Pleased it works for some/most, but obviously not one for me! Thanks for all your helpful comments, I am very grateful to you all

[Grannie1948]

A week ago I started 50 mg twice a day for 2 days then 100 mg twice a day of Flecainide for AF. Also on Eliquis and Metoprolol after having a massive stroke in November. No side effects on any meds. Did not know I had AF when I had stroke.. Had been taking Advil for a week prior for back pain. Had THROMBECTOMY at ER and no damage from stroke, very blessed. Also take Lisinopril, Zoloft, Levothyroxine, Zetia, CoQ10, no side effects.