Flecainide 2 years

[Marky54]

I have been taking 100mg 2 times daily and it has held my PAF at bay.

Are there any long term side effects from taking the drug?

How long can this be effective?

I'm very happy that it is working but could anyone answer the above?

Thanks

Mark

[PeterWh]

Do a search on Flecainide and flecenide on this forum since there have been many posts and many responses. That way you will pick up comments from people who may not see this post.

[Londonant]

I'm in a similar position. Have been taking 100mg twice a day for the last month and (fingers firmly crossed) it seems to be working. This clinical review of flecanaide is quite reassuring and worth a quick skim through.

ncbi.nlm.nih.gov/pmc/articl...

Long may it keep working for both of us

[pottypete1]

Hello Mark

As you will read in other posts I have made, I have been on the same dose as you for over 20 years. I have had no noticeable side effects and have no problem with it.

This is not true of everyone I know but I can only speak for me.

Pete

[BobD Volunteer]

Flecainide works well for many people but a few have problems and one even developed an immune disease because of it. as I'm sure you will see if you trawl the comments.

Flecainide can be effective long term and it does not lose power but often AF progresses needing more of the drug or alternative treatment.

[Thomas45]

I've been on Flecainide for 10 years at 150mg x 2 a day. I am tall. It works for me, where amiodarone didn't.

[Finvola]

An excellent question - and I suspect the answer is 'it depends'. On your AF, its progression, your metabolism, body chemistry etc, etc .... ad infinitum.

I have taken the same dose as you for the last two years and am AF free. My EP's comment is that I tolerate it well. I too wonder how long this can last so I try to dismiss worries and enjoy the freedom from misery that Flecainide has brought.

Here's to many more years for all of us taking Flec. 🍷🍷🍷

[pottypete1]

I could not tolerate Amiodarone.

P

[Marky54]

Many thanks everyone it seems I'm not alone, it seems to be working for several of us. I like to keep active and physical exercise as been my trigger, since been on flecainide daily I have had only a couple of heart flutters and that has been through being very tired from long haul flights. It is great to hear fellow AF people who are in the same situation as me.

Thanks again

Mark

[Stucoo]

I have been on Flecainide since my DCCV in July and I am still in NSR. I have however experienced some side effects that include visual disturbances and Tinnitus in my right ear. I'm also taking Bisoprolol. I do not like taking the drugs and often wonder how I would be if I didn't take them and relied upon life style changes alone.

[PeterWh in reply to Stucoo]

Did the visual disturbances start after being on Flecainide or were they exacerbated after starting.

Apparently there is a tendency for AF to start or exacerbate both tinnitus and possibly visual disturbances.

Also high blood pressure can cause visual disturbances and so can some of the BP medicines (perindopril). Am investigating this as floaters particularly have reared their head.

[Stucoo in reply to PeterWh]

I have have seen occasional floaters for years, but the intermittent black spots only started since I started Flecainide, and the Tinnitus during the last couple of weeks. I saw the my optician recently and they dilated my pupils and took pictures of the back of my eyes - all normal. My blood pressure is fine(low end) and recorded my heart rate at times in the mid 40s

[rosyG]

I don't know about side effects but a cardiologist at a recent meeting said it's good in that one doesn't get used to it and it stays effective- of course if your AF changed that might be different but all the time you are in NSR your heart is able to renew the areas where errant signals were causing changes

[Marky54 in reply to rosyG]

That sounds very positive thanks Rosy

[Lcpatrol]

I've been on flecainide 100mg BD and bisoprolol 5mg OD for 8 years but this year the dose of each has been halved and my AF is still under control. Bill

[Hidden]

Hi Mark, I have been on the same dose for 30 months with no AF and no side effects although I suspect it may be behind some tinnitus and digestion issues. I am a strong believer in not being complacent though and I would look at your lifestyle carefully (this can actually bring many benefits unrelated to AF!!) and moderate the common triggers e.g. over exercise, stress, dehydration, alcohol/fizzy drinks/caffeine, eating particularly certain processed incl gluten & sugar. Also breathing exercises/Mindfulness, yoga and if you have a faith prayer. All sounds boring I know but given the option I wouldn't go back to my pre AF lifestyle. Good luck.

[Rellim296]

Flecainide affects people differently and may cause numbness in the feet to develop.

[Ellenearle in reply to Rellim296]

Rellim296 - I am on Flecainide and Metoprolol since my ablation this past summer - ever since starting the drugs I have had foot-related side affects. Do you experience that? My feet are tender under the balls of my feet, sort of where the toe joint is. Hurt most when I walk on a hard floor with no socks - don't really bother me too much on a daily basis of I wear soft socks, but always sort of a lingering feeling that they don't feel right....

[Rellim296 in reply to Ellenearle]

My toes went numb first - a couple of years after I started taking flecainide when I woke in the morning they felt as if I had been wearing a pair of shoes two sizes too small all night. When my flecainide dose went up from 100mgs x2 to 150mgs x2, the numbness swiftly spread to my heels and ankles and lower shins. They feel as if wrapped a bit too tightly in film, or as if my feet have been filled with concrete and the outside is just starting to set. There's a sense of tightness. They don't hurt and I notice it less if I am wearing socks. It's over two years since I stopped taking flecainide on a daily basis but they feel much the same.

I have no proof that it has been caused by flecainide but whenever I mention it, doctors say it is probably flecainide. I have never had anyone take an interest in the way my feet feel and note down any details.

Flecainide may have affected my sense of taste and I did get sent to an ENT specialist and he thought it was a side effect of medication. I don't know how poor my sense of taste is. I bought some fresh coriander and put quite a lot of it in something and thought it tasteless and my husband commented on the tastiness. I struggle to taste cinnamon too.

[Ellenearle in reply to Rellim296]

I haven't found many references to this side affect, but I think we are experiencing the same general thing. I have only been on the drug for about 4 months, so the feeling remains on the bottom of my feet and hasn't moved up at all. I don't like the fact that it didn't go away for you even after stopping the drug. Am I doing permanent damage to by feet while taking this? My mother had something similar after being on chemo on and off for years.

I don't have any taste issues, nor other side affects - I don't think.

Thanks for commiserating - it's good to know I'm not imagining things

[Rellim296 in reply to Ellenearle]

There are a few of on the forum who have had issues with feet and flecainide - not many. As PeterWh says above, you will find other discussions. I posted about finding a personal dose for flecainide with the aim of taking just sufficient without overdoing it.

Flecainide worked well for me, and if I had a choice I would go for funny feeling feet and very little AF rather than having my heart going off the rails all the time and getting ever worse. I don't feel it is a big price to pay for the way it can control the rhythm.

[Ellenearle in reply to Rellim296]

My problem was mostly WPW and tachycardia - only AF very briefly. Post-ablation (well, post-second-ablation) I have had no recurrences. I am hoping to be able to get off drugs at some point...but I'm unclear how my dr will be able to tell if it is the drugs keeping me in normal rhythms or if I have been "cured". Of course, if I need flecainide I'm more than willing to take it - like you said it's a small trade off. Anyway, I go back to see him in February, and will definitely discuss the foot issue.

[Rellim296 in reply to Ellenearle]

I stayed on flecainide for four months after my second ablation. I reduced to 100 x2 immediately, then to 50 x 2 after 6 weeks and then stopped at the follow-up appointment.

I'd be interested to hear what's said about the foot issues.

[Ellenearle in reply to Rellim296]

I'll report back if I get any good info from my dr about the foot issues -