Flecainide PVC's

[VTBen]

Hello All,

So I am well aware of all the research regarding Flecainide-Propafenone.  Aware of risks. 12 years of research.   I have seen Mayo, Brigham and Women's, and my hometown doc, and they all state a really low risk.  Normal heart PVC's and NSVT here.   .5% chance of proarrhythmia as the highest I've been told from the doc's.  Seem to be totally care free in prescribing now a days.  Maybe its me.  Start at home, get a stress test a couple weeks later.  I've heard them say it was of more concern in the past than it is now.  One doc said the risk of 1:1 conduction, which can be controlled by Beta Blocker is greatest pro risk.
I've read all these studies, had 6 ablations, I have to get on something.  I'm getting old, wanna live a little.  I'd like to hear case reports.  I mean the CAST study is just a few hundred people.  Less than a hundred deaths I think.  The FDA warns against it for anything but life threatening problems because of this study.

  This is what scares everyone, including me.   I'd like to hear real life experiences of people who have taken Flecainide, Propafenone, or even Mexitetine for PVC's or Non Sustained VT.  Anyone had success?  How many people are taking it for something other than SVT or A FIB?  Anyone have proarrhythmia?  Anyone die?

I'd just like to know how many people are taking it for PVC's and how's it going?  More and more docs are giving it out.    I think a lot of people would like to hear this.  Hopefully good news.   I've read a lot of posts where people are sitting there thinking about taking it, but scared.  We hear weight the benefits.   When you consider death, benefits go right out the damned door.  I'll suffer a whole bunch before I walk around afriad of dropping dead.  Been doing it for years.   But is this rational.   Will we drop dead?    I have a bottle of it right now.   Can't get myself to take it.   Hope to get some good posts and discussion.

Ben

ANd good luck to all of you who are suffering.  

[kevk]

I have HOCM with mid wall obstruction. The top of my LV contracts before the bottom causing obstruction of blood flow from LV , A PVC on every beat.

[VTBen]

By the way, what is the reason you developed VT?

[Jerry_NJ]

I'm 71 and I think that, the fact that my symptoms are "minor", but I can't run/jogger any longer and did up to late 2007 when the AFib turned permanent.  I think the fact that  mini-maze (done during heart valve surgery) didn't stop the AFib and my last electrocardioversion lasted only 5 days, and my left atrium is enlarged all add up to less than optimistic forecast for the results of an ablation.  I also think Medicare rates are less than the EP would like to get for his expert work.  I think this will get worse as the government take over of all medical decisions goes forward.

Sorry to turn the subject to me, oh yes, my cardiologist give Flecanide a very low chance of converting me given my history.  He also says given my quality of life and life expectancy will not increase even if I were to regain NSR... albeit I'd sure I'd be able to again engage in higher physical activities and exercises.  That's part of QoL to me.

I have not contacted any other facilities.  I am not even sure my cardiologist and the internal EP do ablations, but I assume they do.  I was referred out of the practice for my heart surgery and could discuss ablation with that connection too.

Briefly, I have undergone

[VTBen]

I'm glad it's working for you.  Hopefully it will treat me the same!

[VTBen]

Thanks for the input, the more info the better.  Sorry to hear that you are stuck in A Fib.  Suppose you've tried everything else?   I took Multaq for NSVT and PVC's (off label) this last spring and it created an atrial arrhythmia for me, and made me feel pretty dizzy for the first 5 days I took it.  I don't think that drug is all it's cracked up to be.  It's too bad you can;t give the flecainide a try.   There really isn't much of a safety difference between it and Rythmol, besides for the beta blocker effect in Rythmol.  However if you take a beta blocker with the flecainide, I was told by both Mayo and Brigham and Young that the safety is identical.   Both places stated they could both be started outpatient, but offered inpatient if I was worried.

Why is ablation off the table?  Have you gotten an opinion from a large hospital like Mayo regarding ablation?   They are almost always willing to at least give it a try.  What can it hurt? I've had six.

[kevk]

I started taking flecainide in 1995 after my second discharge from my ICD for sustained V-tach at 315 bpm. I have been on 300 mg of flecainide a day and 100 mg of metropolol ever since. My experience with flecainide has been positive for the past fifteen years, my amount of pvc`s has been cut to a fraction. I had 121 runs of sustained slow v-tach last year according to my ICD that did not require defibrillation, For me that is great.

I did not start flecainide in the hospital and I had no clue how dangerous it may of been.  

[Jerry_NJ]

I can't respond to your survey choices, but I can say I took Propafenone for about 3 years to help keep me in Normal Sinus Rhythm following electrocardioversions (two) for atrial fibrillation.  I took a rather high dose, 225 mg three times a day (every 8 hours).  I have not experienced any problems from that experience, which ended about 2.5 years ago.  I subsequently was put on Rhythmol  SR 425 mg twice a day for about a month followed by another electrocardioversion.  That NSR period lasted for only 5 days and I subsequently went on to only Metoprolol XR (as much as 100 mg twice) a day to control my (Ventricle) HR.  Again, I had no known bad reactions to the Rythmol.  My cardiologist requires a hospital stay to implement Flecainide and does not support doing that for my case.  So I am now on both BB and Calcium Channel Blocker to control my HR...and live with Permanent AFig.  My doctors say getting me back into NSR does not increase my life expectancy, which is reduced somewhat by the existence of AFib, I have no numbers...just data from tests that say "rate control" and "anticoagulant management" give an AFib sufferer the same or better life expectancies as those converted to NSR.  Ablation was specifically rejected by my doctor and a consulting EP.

A little off topic, but as you post has been unanswered for several hours I offer this input/experience.