Flecainide Aka Tambocor

[Tiffw28]

So my EP would like me to start flecainide for my arrhythmias. I’m pretty nervous about this medication since at this point I’ve only every taken Toprol XL (200mg) Can anyone share their experience with me? I’m curious what people really experience with this and how it goes! Thanks!

[Bedlington14]

Hi, I’ve taken Flecainide, along with Verapamil, for PVCs for 7 years. I’ve had no side-effects (that I know of), and it’s been fairly effective, but I think it’s becomes less effective as the years go by. One of the older drugs, I’ve been told. Hope you get on ok with it.

[Tiffw28 in reply to Bedlington14]

Thanks for the reply and sorry my reply is so late.

It’s good to hear you haven’t had issues. The medication is pretty intimidating! I’m at a point where my loop recorder is showing NSVT so while it’s still an option that may change.

Do you have any runs of PVCs or are they all singular?

[Bedlington14 in reply to Tiffw28]

Hi Tiffw28, I have runs and single ones, but they’re random. I can go for months with none, then they seem to happen in a cluster. I’m told I can take extra Verapamil and Flecainide if necessary, but I may choose to have an ablation at some point. Only thing I’ve noticed with Flecainide is it seems to be contra-indicated with many other drugs, but that may or may not be an issue. What is NVST, by the way? That’s new to me. x

[Tiffw28 in reply to Bedlington14]

Thanks for the response. So yeah I have a lot of PVCS and PACs myself. Normally my PVCs have only been singular or 2 together but last year I had a run of 14 and yesterday I had a run of 6 and 11. The runs are what get worrisome and depending on your heart could be an issue. My heart is structurally sound so they claim my runs are ok for now. I don’t know if I trust that completely. I want to but when you don’t know why something is happening how can they give reassurance? Feels strange to me.

So NSVT is non-sustained ventricular tachycardia meaning Having More than 3 PVCs in a row and terminating under 30 seconds. After 30 secs it’s sustained VT which starts to really get dangerous.

[Gill68]

I was apprehensive too but went on it in 2012 and it’s been the only medication that’s kept my symptoms very low, so if needs must, try it. I’m still on it.

[Tiffw28 in reply to Gill68]

Thanks for the reply! Sorry to respond so late to this thread.

So you’ve been on it since 2012? Wow. That’s a pretty long time. I’ve been on toprol xl since about that long and I like it but it’s to the point where it may not be enough.

[Cubiczee1252]

Hi! I was VERY afraid to take it, but my arrythmias were making life unbearable so I took the plunge. That was 7 years ago and it gave me my life back. I don’t have any side effects that I am aware of either. I know the literature says to start the drug in a hospital setting but I did not have to do that. I take a very small dose and I also have heard that the drug may become less effective over time. My EP has given me the ok to increase should I need to. So far so good. I hope you have as good of results as I have had should you decide to take it.

[Tiffw28 in reply to Cubiczee1252]

Hey thanks for the reply! Sorry it took me so long to reply to this thread.

If you don’t mind me asking what arrhythmias do you take the medication for?

[Cubiczee1252 in reply to Tiffw28]

I was diagnosed with atrial tachycardia from a 30 day monitor. As soon as I got out of bed my heart would go in and out of this arrythmia several times a minute. I was symptomatic with breathlessness, anxiety, and feeling lightheaded. At the time I was told an ablation would not guarantee a cure because there were multiple points of origin so my EP felt meds were the way to go.

[Tiffw28 in reply to Cubiczee1252]

Thanks for the reply,

I also suffer from atrial tachycardia as well as a few others. It’s crazy how “jumpy” it can feel. Very scary.

They originally was going to give me the med for the A-tach because I was having so many runs of it it looked like Afib but now they want me to take it for NSVT. It’s still optional but if something can stop this nonsense I think I would want to take it. It’s nice to hear from others who understand. So thanks

[Cubiczee1252 in reply to Tiffw28]

You’re very welcome. I’m the kind of person that feels EVERY odd heartbeat and this rhythm was really affecting my quality of life. I’m so very grateful that this drug gave me my life back. I know it doesn’t work for everyone but for me it was a lifesaver. I still get pvc’s and pac’s but the atrial tach was miserable. My new EP (I moved back to Ohio) has noted a few runs of AFib but I was not aware of those. Go figure!

[Tiffw28 in reply to Cubiczee1252]

Im glad it has helped you so much! That’s awesome. I’m one of those that feel every beat as well. It’s stolen a lot of my life away. It’s pretty bad right now thanks to the NSVT diagnosis and the fear I have. I’m hoping to figure out how to deal.

[drooi]

Like the others I was apprehensive about taking Flecainide, especially when it is a drug that is recommended to be started in a hospital setting. In any case it has been a great drug, gave me my life back, with virtually no side effects. However I find I am needing to increase the dosage lately to eliminate the arrythymia, even though I only started it under a year ago. Good luck!

[MtnMike]

Tiff, when I was initially prescribed Flec I said no way, it has a black box warning for death. The second Cardiologist I saw explained the people who died had had a recent heart attack so I said ok, give it a try. It works but I'm one of those people that experiences a side effect if there is one. I had a host of them with Flec, the worst was severe anxiety and constant depression. I "toughed" it out for a couple of months and finally told my Cardiologist enough. At this point he referred me to an Electrocardiologist who told me he couldn't do anything because my PVCs had decreased to near zero!

The primary consideration from my doc's perspective is the PVC "load" as once it gets above a certain percentage, it will damage your heart. Ask lots of questions! MtnMike

[Crash88 in reply to MtnMike]

do you really need to be hospitalized to take Tambocor?!

[carolly]

I was diagnosed with 3-4 different arrhythmias, had an ablation which sorted out atrial flutter/fibrillation, but frequent tachycardia and PACs left. Flecainaide calms things down nicely. Just need an occasional Bisoprolol to kick back the tachycardias. No downsides apart from maybe just a bit dizzy sometimes.

[custard1]

Been on Flec now for maybe 18 months, was converted back to sinus with a big dose in hospital, now take 50mg twice a day . Ive experienced no issues with it at all, Its usually first used under hospital conditions (just in case of a reaction) I have no worries about taking it myself. best of luck

[Tiffw28 in reply to custard1]

I was under the impression this medication is suppose to be started in the hospital but apparently they don’t require that anymore. I’m not really a fan of a medication like this not being tested out under observation!

[topcat2052]

Hi. I took flecainide for 3 years before I developed a reaction to it, with chronic hives for 13 weeks! ( a quite rare side effect). It was hell and I only got through it by using accupuncture, with a very well qualified and experienced accupuncturist. Stayed on flecainide and dropped the dosage, but continued with skin problems plus, to be honest, it stopped being effective. Ended up coming off it for an ablation, which wasnt successful either. Am considering a second ablation. Have been taking apixaban, then recently changed to dabigatran, as again, problems with skin rashes, but only taken dabigatran for a week or so and skin has broken out again!

[Tennisguy7]

Have you had an ablation? I decided against any drugs unless it's the last resort. Ablations have gotten much better./ These drugs have bad side effects in my opinion. Are you taking MAgnesium supplements, and other supplements>?

[Tiffw28 in reply to Tennisguy7]

I haven’t had an ablation. To be honest I’m very scared of it. I don’t know mentally how well I would handle that especially knowing you are on that table for what 8 hours?? Seems terrifying! But the thought of this medication isn’t exactly appealing either.

[Tennisguy7 in reply to Tiffw28]

my ablation took about an hour. Find an EP that real experienced. Where are you located>? i am in SoCAl and there are a few great EPs down here. Also check out Mayo Clinic and the major hospitals. Find both an EP that is a FELLOW of the Hearth Rhythm Society AND a center that has "guided" catheters. I never hesitated to get an ablation. See Moundman comment below as well.

Glad to talk about it my cell is 949 4394503.

All the best.

david

[Tiffw28 in reply to Tennisguy7]

Thanks for all the help!! So I’m in CT. My EP is well respected thankfully. He spent over 20 years as a fellow with Yale Hospital and is now part of Hartford hospital. I have an tele-appointment this Thursday so I’m going to discuss all my options with them. I think I may also get a 2nd opinion though. I don’t like that while my EP watches over my loop recorder and over sees all of his patients to some extent it’s his PA that does all the in face appts. Now that my arrhythmias seem to be accelerating I don’t want to just be dealing with the PA. No offense to her of course.

So other than researching success rates and hearing other people’s stories (good and bad) online the only close personal experience I have with ablation is my uncles. He has had three in the past year and the first two failed. They said they will not do a fourth if the third doesn’t “stay”. He also had to be shocked a few times during each of the ablations. It has really messed him up. So I think that’s why I’m scared about it all.

[Tiffw28 in reply to Tennisguy7]

I was looking through my older thread because the question of flecainide has come up again so I was re-reading.

If you don’t mind me asking what arrhythmia did you have the ablation for? I’m suffering from NSVT now and I really don’t want to mess with a ventricular arrhythmia so now I’m thinking about pushing for an ablation if possible.

[MoundMan]

Til an ablation more than 2 years ago, was taking daily dosage of flecainide. Worked well with me for several years. Had full energy and no side effects. No need for it since ablation.