Flecanide Query

[Misseyj55]

Hi everyone Firstly

I wish everyone a Merry Xmas and a wonderful new year and may everyone on here and their families have a well and happy time over the coming festive season....

Now can anyone shed some light on my medication for me....

a few months ago the EP said I had 3 choices...

1..I do nothing and go on as I do most days feeling a bit lousy every time my heart decides its going to miss a beat and make me feel faint and crappy for a while. and sometimes for the rest of the day...

2. have another ablation and risk gastroparesis getting worse again and having to crawl back to a better place again over several months...( he is reluctant to touch me again)

3. take Flecanide as a pill in the pocket....which then turned into twice a day 50 mg dose...

then I visit the GP who promptly tells me stop taking the drug and wean myself off it ...cause its doing me harm ....I said what harm she wouldn't elaborate.

so stopped the night dose then the morning dose and 3 days later I'm back having the crumby attacks and last night I sware I went into AF for about 5 hours but it was around 116 bpm...so I took flecanide and drank some hydrolyte which has potassium in it and eventually it settled and I feel totally let down as....this morning its now missing beats so I took another 50 mg .... 9 hours apart and know I shouldn't take any more till tonight if I need it ...at the moment I am in SR and I feel good..... but is this pushing the boundaries of a pill in the pocket .....or should I just take it twice a day and have some peace of mind as this is driving me nuts again....Does anyone else take this medication on a twice daily basis please?

thanks for reading my post I would appreciate any input out there

regards and well wishes to all

Jo x

PS I will ring the EP rooms tomorrow as he has consults on Wednesdays.....I know his receptionist will tell him what happened and will see what he says but I would like to know others experiences with Flecanide...

[Sulily49]

Hello, I am on flecainide, warfarin and verapamil. I take my flecainide daily 100mg morning and 100 mg evening. I had my 3rd ablation 6 weeks ago. I have been on flecainide for just over 18months. Flecainide didn't keep me in nsr all the time therefore had the 3rd ablation. I have been ok on flecainide but am hoping in the future I can come off it and just use as 'pill in the pocket' but at the moment feel I need to stay on it to keep me in rythum whilst heart healing. I am due to see ep in January so plan to discuss with him.

I hope your ep will be able to reassure you and let us know what he thinks.

Take care

[Misseyj55 in reply to Sulily49]

Thankyou Sulily49 I appreciate your feedback and yes will let you know what he says tomorrow....

[Hidden]

Well firstly would ask GP what harm Flecainide causing ? Hardly information to help you make an informed decision is it? Personally I would have my discussions with my consultant . I have been on flecainide twice a day for about three yrs it helps with my condition . Good luck whatever your informed decision is

[Misseyj55 in reply to Hidden]

Thankyou ....Yes I did ask ...GP was just emphatic I stop taking it and then said wean yourself of it your only supposed to be taking it as a pill in the pocket but I end up taking it everyday because I have these stupid episodes everyday....its a bit hard to know what to do...that's why I asked on here do other people take this drug regularly....

I rang my EP today and left a message with his desk person come helper come secretary and she knows me well so he might ring tomorrow after his clinic is over sure hope so or I will ring around 12 md that's when he finishes on Thursdays... Jo x

[BobD Volunteer]

OK Simple question back to you. Who do you trust? A person who has to be jack of all trades and master of none, or one who has spent years studying his speciality. To put it another way, would you ask an electrician or an odd job man to re-wire your house? Remember also that the odd job man worries about his budget.

[Misseyj55 in reply to BobD]

Yes Bob your right , I have contacted the EP and am waiting on a response from him in the mean time I am going to stay on the medication as I can't stand the irregular heart beats and the bad feeling I get with it....I've had a good day except 1 episode today so less anxious...and not worn out...

[Robyncarmen]

Hi Missy, no advise just my experience.

Yes I've been on Flecainide 50 mga for 18 months now. Due to see Cardiologist on 5 th January. Since stopping all my bad habits my AF Episodes are few & far between apart from one last week due to stress from work I've been free for 3 months. Before I would get AF twice a week or more.

Now I'm cutting back on the drug Flec to once s day & am now taking it at night as it really slows me down when I take it night is good as I'm sleeping anyway.

Can walk on the treadmill now in the morning at a moderate pace not over doing it but walking which is great. I feel good doing exercise.

Hope this will help you another way we cope with SF.

Flecainide is a Beta Blocker so I will have one in my bag as well.

I read a post here last week & the person said they felt terrible on Flec it caused them AF. Who knows we're all different & we cope in our own way. Love this site reading how every one copes it helps.

Cheers hear from you. Rob xxx Australia

[Misseyj55 in reply to Robyncarmen]

Thanks Robyncarmen

that's really interesting information...helps with how I feel and want to feel like... I am waiting on a call from the EP and will keep taking it till he tells me otherwise....I too am able to go for a walk while on this medication...last year they had me on Verapamil and then Flecanide too and I thought too that it was the Flecanide that made me crook all the time but now I think it may have been Verapamil...since stopping it last January after the ablation I felt much better...now the crappy heart beat has started again I still think he may have to go back in and have another go at fixing the bit that's causing me the problem...tidy up were his words...then gastroparesis issue again but at least I will know what it is this time round...

[Kodaska in reply to Robyncarmen]

Flecainide is a sodium channel blocker. I don't believe it is a beta blocker.

[Rellim296]

We are all different and flecainide can be magic but it is a powerful drug and does more than keep AF at bay. I don't think it is a betablocker. It is my view that the less I take of it the better (I was on 150mgs x 2 a day for a while) but it did work well for me. I still take 50mgs if I really need to and it does wonders. It's a bit of a rock and hard place thing.

Yes, enjoy the festive season!

[Misseyj55 in reply to Rellim296]

thank you Rellim296

Gosh its reassuring and always good to hear how others experience things and how they have just as you say it is a bit like magic and I feel so much better on it than on nothing...as I said before I am waiting on the EP to contact me to see what he thinks...thankyou Jo x

[Finvola]

You need to make your decision based on a full discussion of your particular condition with an EP who can explain the advantages and disadvantages of the treatment. I have been taking 2 x 100mg of Flecainide for 16 months and have had no AF in all that time. With hindsight (great thing), I should probably have asked my EP about starting on the lower dose of 2 x 50mg and had an explanation as to why the higher dose was necessary in my case.

The main point for me is that 200mg of Flecainide daily are infinitely better than 2 or 3 weekly bouts of AF, SVT and ectopics which I had before I started it.

Best wishes with your decision.

[Misseyj55 in reply to Finvola]

Yes I totally agree I have problems every day without Flecanide so am feeling a bit happier with the crappy heart beats affecting me less ... Much nicer life ...,thank you x Jo

[Dee1989]

Hi, do you know why your doctor thinks it is doing you harm? When I took flecanaide twice a day i ended up with chest pains for a few days knew I didn't feel right on it went to a and e and it turned out it was inducing a 'brugarda type ECG' which I had to immediately be taken off of the drug now I have a list of meds I can't take. More importantly I do not have brugarda syndrome but uncommonly some people can be induced by mess. Not sure if this helps. Dee

[Misseyj55 in reply to Dee1989]

Hi thanks for you input... My ECG was normal on Flecanide a few weeks ago and I don't get chest pain while on the drug but got it without the medication so just the opposite thanks will ask to have another ECG next month perhaps just to check up ... Jo

[Hidden]

My cardiologist put me on Flecainide 20 months ago (I wanted to postpone the ablation offered) and I have pressed him several times but he is adamant there are no side effects given my age 62, no other heart defects or health issues and exercise (brisk walk is best) daily. I aim to reduce my 200mg/day dose inside 2 years but it has stopped my AF completely.

I would add that 100mg/day looked like a failure as had 9 episodes in a month and my cardio agreed we should try 200mg/day, he says the doses (100mg am and 100mg pm) should always be even i.e. when I reduce not 50mg am and 100mg pm.

If I was you I would ask the medics to try regular Flec and also look yourself at Mg/CoQ10 supplements and lifestyle changes e.g. no alcohol, caffeine, mindfulness and less work/social stress plus more prayer, if important to you.

Good luck and merry christmas.

[Misseyj55 in reply to Hidden]

That's good advice my EP hasn't rung me back so I'm going on the he's ok with me taking it twice a day and yes I'm doing all the things you suggested ... I do miss a good cuppa though ... Thank you x

[Hidden in reply to Misseyj55]

My experience is it does get better! e.g. I am back, after over a year, on very weak tea now.

[Misseyj55 in reply to Hidden]

Thank you xx

[Sam16]

Jo

I am on 100mg of Flecainide twice a day and have been so since August 2014. I am only 46 years old and no one has told me that it's doing me harm. Fortunately, so far I haven't had an episode of AF since I have been taking it.

Sam

[Misseyj55 in reply to Sam16]

Good to know x Jo

[Kodaska]

Flecainide is an immunosuppressant. I.e., it prevents the brain's immune cells from activating when they sense an invader, cell damage, or anything else that doesn't belong there. If you have a pre-existing infection of some kind - e.g., Lyme (borellia) bacteria - you can get some pretty nasty side effects that don't go away after stopping the drug. Insist that your doc tell you what the issue is with stopping flec. Don't take vague answers - insist on knowing what s/he knows.

If you want to learn more about what a drug-induced autoimmune disorder is like, search this site on my name. What you'll find isn't pretty.

[Misseyj55 in reply to Kodaska]

Ok will keep that in mind as I have a low white cell count...

[Kodaska in reply to Misseyj55]

I don't think the white cell count has anything to do with the brain's immune system, which involves cells called microglia. They don't live anywhere but in the brain.

[Misseyj55]

No ischemia that I know of and I do feel better on it than off it. Just waiting on EP to ring me back ...

[Misseyj55]

Well how do I thank you all such great input and I feel much happier having read all of the information... Still going ok on the drug ... No phone call from the EP and if he doesn't ring he's not going too and I will continue with what I'm doing as I'm sure he would have been right back if he thought I was doing the wrong thing ... Ok cheers everyone xx Jo