Flecanide

[Elaine1951]

What's people's experience of this drug please. ? Is it a pip. What are side effects

[Hidden]

Hi I take it twice a day so I don't use it as PIP although a lot do. Been using it for a few years now

[PeterWh]

Search posts for flecanide and flecainid - there have been quite a number of posts, especially recently.

[Kodaska]

I hesitate to speak up, but since you asked.....

healthunlocked.com/afassoci...

I hasten to note that my experience appears to be very rare.

[jeanjeannie50]

Hi Elaine - I'm taking 2 x 50mg Flecainide daily and have been doing so for about 6 weeks, before that I took it as a 'pill in the pocket'.

I must say that since taking it every day I feel that I've got my life back. I no longer feel extremely tired afterwards if I walk anywhere and feeling ill after eating lunch and then daring to move has disappeared altogether. My paroxysmal AF attacks were quite severe and and lasted for weeks and sometimes even months making me feel quite disabled. However, it's nice now to feel quite normal again, but of course it's still early days for me. I'm wondering now why I was so reluctant to take this pill each day, but then of course it was the fear that these tablets would have some nasty side effects. Well, I don't appear to have any so far. You may feel a little odd when you first start taking them, but that soon wears off. Note that they can only be prescribed initially by a cardiologist or EP and not your GP and that you will need an ECG to check that all is well a few days after starting to take them.

I have been assured, by heart specialists, that these tablets have no nasty side effects.

Jean

[Elaine1951 in reply to jeanjeannie50]

Many thanks. My cardio is suggesting them following a calcium test. Good luck ! So glad you're getting some relieg

[rmclachlan]

I take 100mg twice daily, no problems with side effects. It seems to be quite effective although I get occasional breakthroughs. Just had a two month spell with no AF, it reappeared on Sunday😟 I take it with Bisoprolol, which is a common drug pairing - again no side effects.

[Hidden]

Hi Elaine, I am 62 and have PAF with no other heart/health complications - relevant as other issues can increase the side effects of Flecainide I believe.

I have taken 100mgs twice daily for coming up for 2 years, no known side effects but I have partnered this with Mg and CoQ10 supplement plus 1 mile x2 per day walking - do consider these areas as the research/conclusions drawn by me indicates they could be important. I intend to try to wean myself off soon, if I can, as I think it can't be good long term.

It's a balancing act, don't take it regularly until you have to but don't leave it too long as AF is difficult to stop once the heart has got into the habit.

Good Luck!

[AnticoagulateNow]

Back in pre-ablation days when I had AF, I spent the last 12 months with flec as a pill in the pocket. For the first few months it worked a treat. I would be back in NSR within an hour after popping it. But slowly, over time, it took longer and longer until, in the end, I was left wondering whether it really was the flec that reverted me or whether it was the natural spontaneous ending of the AF episode. Perhaps others have had longer success with this drug but I fear AF seems to have a knack of eventually overcoming anything we throw at it. It's a very powerful drug though and shouldn't be taken casually. It carries the usual risks to both liver and kidney functions and those with structural heart disease won't be prescribed it at all. In everyone, it carries risks of proarrhythmia, ie new arrhythmias, atrial or ventricular, paradoxically caused by this anti-arrhythmia drug!

Have an ablation if you can Elaine - it saves all this hassle.......

[CDreamer]

I took Flecainide for several years before ablation. I did't want to take it because it is a very toxic drug - no doubts about it - but it is always a risk / benefit assessment - are you better with it or without it? At the time I was definitely better with it - now I am not so sure as I now have a muscular / neurological condition and Flec has been suspected of being a factor in people developing few life long conditions - but that happens with asprin or any other drug.

As a PIP I took it occassionaly and it worked for me very well, I ended up on the maximum daily dose of 300mg before ablation and was taking that dose for about a year - that was not good and I think it may have exacerbated a latent underlying condition into a full blown disease, but that is only a personal opinion.

I do not think doctors really can know that it will be 'safe' for you personally as they can only make judgements on known knowns - which are numbers that come from clinical trials and studies which come from herd statistics. I.e. Unless there large number of Doctors or people reporting adverse affects they will consider any drug 'safe'.

[PeterWh in reply to CDreamer]

And the trouble is that in many, if not most cases, doctors (GPs, EPs, etc) do not report side effects for a number of reasons. Many also just look at the published side effects and poo poo others. Also it used to be the case that there was a fair amount of work involved in reporting affects, particularly after medicines are out of the trial / first couple of years of use period.

[Gracey23 in reply to CDreamer]

I've been on Flecanaide for years and now at max dosage of 300 mgs daily. It's keeping me from episodes now that dosage was increased however I now suffer from nervous systems problems. Would you explain your neurological symptoms as I've been searching to get answers. My EP doesn't feel that my symptoms are a result of Flecanaide. Thank you and good health to you.

[Elaine1951 in reply to Gracey23]

Hello, Im not taking Flecanaide but as it was just suggested by my cardio thought Id ask others on this v helpful group. Many thanks

E

[CDreamer in reply to Gracey23]

My condition is called Myasthenia gravis & it just like AF symptoms vary - all involve muscle weakness - especially after using the same muscle repeatedly. The first symptoms were very vague - fatigue like I have never experienced before, then my eyes were effected - sudden onset Ptsosis (inability to open my eyes) - double vision - waddling gait - shortness of breath - swallowing was effected - neck & shoulder weakness - I couldn't brush my hair because I couldn't lift my arm above shoulder height and I could go on an on......

Suffice to say it is treatable but with drugs that are far more dangerous than Flecainide. I am now on the verge of a medically induced remission but every time I catch a cold I have set backs.

I have heard quite a few people report dizziness / spaciness feeling with Flec and problems with their eyes, I don't believe Flec caused the Mg as I think it was lurking for a good many years before I had AF but something definitely exacerbated it. By the way all anti-arrythmic drugs and all beta-blockers, ace inhibitors and a whole lot of other drugs including magnesium supplements are contra-indicated for Mg'ers so if the AF does return my options are extremely limited.

In the meantime I am trying to live as well as I can by eating clean, exercising when I can and avoiding stress.

Webmd - side effects of Flecainide.

"Dizziness, vision problems (such as blurred vision, problems focusing, seeing spots), shortness of breath, headache, nausea, shaking, tiredness, or weakness may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly."

Oh, and if you take it regularly ensure you are tested regularly for liver & kidney functions, both before you take it and every 6 months or so whilst taking it.

[Gracey23 in reply to CDreamer]

Thank you so much for sharing your information. I'm very sorry that you are dealing with more issues than AFib. You condition seems very serious and I wish you good health. My difficulties are more linked to my central nervous system. I have feelings of electrical current going through my extremities. I can't seem to get any answers so now I'm working with a naturopath. She thinks my issues are all linked to the electrical problems with my heart. I've been worried that my issues are exacerbated by Flecanaide. Please feel free to reach out to me at anytime, I am a great listener. Take care of yourself.

[CDreamer in reply to Gracey23]

If you read the literature then you will see that one of the many side effects of Flec is either numbness or sensations of pins and needles in the extremities.

Flec has also been used as a treatment for MS so it obviously does effect the central nervous system.

I have found that doctors very rarely give you definitive answers and I have often been left to figure it out for myself and they have to be scientifically evidence based so will not commit to saying anything unless they can produce evidence, which can be very frustrating.

On the other hand we as human beings seek to make connections so if we see a link we try to attribute cause and effect, which is not always true.

Accepting 'I don't know' is very hard,

[Gracey23 in reply to CDreamer]

Thank you for your kind reply. I have looked at side effects of Flecanaide but never read about drug used for MS. If you come across the link where your got information I would like to read. Thanks again and good health to you.

[Dee1989]

I had a very rare side affect with flecanide, I was getting chest pains for about 4 days on and off I ended up going to my a and e feeling a bit silly thinking maybe it was just muscles but they did an ECG and picked up a rare condition called brugarda syndrome. I was told I instantly had to stop flecanide and was kept in hospital for over a week under observation. When I saw my EP he told me I did not have the syndrome but it could possibly be induced by some drugs (again this is rare) so I am now not allowed a list of drugs.

I then went on to take a calcium channel blocker which was ok and eventually had my 2nd ablation and am now medication free

Everyone is different I have heard lots of people that have been great with flec.

Dee

[Hidden]

I have been put on Flecainide twice and on both occasions it gave me mild palpitations on a low dose and I was taken off straight away. So it's not for me.

[CTG99]

I started with Flecainide as PIP (150 mg when needed) but as AF evolved, had to start taking 100 mg 2 x daily. At that point I started noticing that if I looked anywhere other than straight ahead, I'd start to feel a bit dizzy. Saw the EP and as most of my episodes were occurring first thing in the morning, he suggested keeping the 100 mg at night, when it didn't matter if my vision was slightly affected as I'd be sleeping, but drop to 50mg in the morning. That made a huge difference - vision issues went and I didn't notice any other side-effects. I'm happy using it.

Caroline

[Mabel247]

I have been on flecainide for 3 years 100mg twice a day. I take it with bisoprolol, a statin and rivaroxiban as an NOAC. Apart from the odd PAF it has transformed my life. I was getting 24 hour episodes 2 or 3 times a week which was very draining now I get one episode every 3 or 4 months for about 6 hours. OccasionaI fluttering and tiredness are the only side effects I suffer. I had a stroke 5 years ago as a result of AF so if all these drugs keep me well I endorse the flecainide wholeheartedly. It has saved my life.