Propafenone on demand?

The last AFIB Report had some comments about a fairly high number of us taking propafenone and similar meds only when we have an episode. I would like to hear some comments from some of you who are doing this.

My history is a chance diagnosis about 2 1/2 years ago (I went into afib right after a colonoscopy, when I was hooked up to monitors), a realization that I had been eperiencing some night time episodes for a while, and then research to figure it out. I just turned 54, am very active, and started taking mg supplements about a year ago. At first, I went 9 months or so without an afib episode, but have had one each of the last 3 months, and two last month. They are now short--I am a vagal afibber, and it comes on at night. I am prescribed propafenone twice a day, but when I have an episode, I chew one, walk around for a bit and then go back to sleep. They usually pass in about 4 hours.

It sounds like discontinuing the twice daily propafenone might not have any effect on the frequency or duration of the episodes. What is the collective experience out there on this? And don't tell me to ask the cardiologist as I had to fight with him just to discontinue coumadin! Unless there are some major risks, I would like to make my own decision, but I also don't want to end up in afib for several days. Thanks, John.

John,

I was diagnosed with AFIB early this year. I started taking
flecainide, which is very similar to what you are taking, on a daily
basis. The episodes became more frequent so I discussed (having
gotten the idea from this board) the idea of on demand use. She
agreed but felt it wouldn't work. She was dead wrong and I strongly
urge you to try this approach.

I take the drug as soon as possible on onset, which is alway at night,
sometimes after consuming alcohol and I take a second dose in the
morning. I convert within 10-15 hours. I have episodes about
once every three weeks but the episodes were almost weekly when
I was taking the drug daily. It is somewhat of a paradox, as the daily
drug increased the frequency of episodes but shortened the duration.
I had only two episodes in the last year when I wasn't using the drug
either daily or on demand, and both lasted way too long.

Noone really knows the long term risk of taking these drugs on a daily basis so why do so if it is not necessary. Who know what changes to your heart will occur with long term daily use. You are too young to experiment with this stuff, it seems to me. If your doctor fights you on trying this, find another doctor. It is a great approach. The fact that he /she fought you on stopping coumadin makes me question him / her. If you are otherwise heart healthy, your episodes are not frequent and do not last long and you take aspirin, I don't see why someone like you should be on coumadin. I think that many doctors go the coumadin route to cover their ass. Another thing
to consider is that many people who use the drug daily find that it stops working at some point. In Hans' recent survey, I believe I read that only ten percent of people using the drug on demand found it to be ineffective over time, but I don't know how reliable this data is. My gut tells me that if the drug is used on demand, it will probably do the job much longer than if you take it every day.

Good luck. If you have any questions, you can e-mail me directly at
kacker@nyc.rr.com.

I totally agree with Kerry. I was on 100 mg Flec. BID and felt lousy so cut it back to 50 mg twice/day. I had a night time Afib attack and took 100 mg at once, then 100 mg 5 hr later and another 100 mg 5 hr later. I went back to NSR within 24 hr of the onset. My cardio had a fit and said to go to 200 mg Flec twice a day! I am 42, very active, and feel some of the cardios are prescribing these powerful and potentially dangerous drugs like candy. I am going the on demand route on my own but keeping the flec to 100 mg at 5 hr intervals up to 300 mg max. Everybody is different so this is not advice, its just what I am trying for myself. I'll post results next time I go into Afib.

John
I take 300 mg of Propafanone on onset of AF. I have being doing this for about a year and a half per my EP. Im vagal also and usually have episodes every 2-3 days. It usually works in 2-3 hours. If not after three hours I take another 300 mg I will convert after 30 min. of second dose if needed. Usually the first dose does it though. Hope this helps and all the best.

Frank
V44

I am a male age 57 who has had 10 bouts of afib in the last 3 years. I have been cardioverted 7 of the 10 times. My E.P. has me on 100 mg of flicainide 2 times a day. I refuse to take this amount. I am taking 50 mg in the morning with 50 mg of topinal in the morning. I have come out of afib the last 2 times by taking extra flicainide. The increased dosage has brought me back to nsr in under 24 hours. This has saved me 2 trips to the hospital to get c.v. My doctor says that I have to get c.v. in under 48 hours or I have to go on coumadin. I am not on coumadin.
I think I might even stop the 50 mg on flic. and just take the meds on demand. Any comments?
Doug

Although the "on-demand" approach was first discussed on this Bulletin Board and in The AFIB Report almost two years ago it has only recently been subjected to a clinical trial by a team of American and German cardiologists. They found the approach to be safe and effective in an at-home setting (1). If your cardiologist does not know about this he/she is not up-to-date. However, you obviously need the approval of your cardiologist before you try it.

Hans

Marrouche, Nassir F., et al. Oral bolus of IC antiarrhythmic drugs for atrial fibrillation: outpatient versus inpatient administration. Journal of the American College of Cardiology, March 19, 2003, p. 98A

I take 250mg-300mg of propafenone at onset of an episode along with 25-30mg of diltiazm.
If I am not active but awake , episode will end in 1.5-3.5 hours. If I go sleep, it usually takes 3-6 hours to terminate. If I am active (say finishing up a round of golf), the first dosage may not work ,and I repeat the dosage about 7-7.5 hours later. Only quite rarely do I have to go to a third dosage 14-16 hours from onset.
I also occasionally take a very small dose of propanone (75-112mg) as a preventative as I believe it provides some limited protection especially during my lost vulnerable hours (2-5PM)

It's amazing, Scott, that your cardio recommended 200mg. twice day.
That might be malpractice.

Dr. Hans Larsen,
Thank you for your comments. I tried to read this artical on line but could not get access to it. Is there a way to read this artical on line? Thank you, Doug

Thanks, everyone. I am tempted to try the approach Frank mentions, but I know, as Hans always cautions, that I should check with the cardiologist. Personally, I do not believe there are many cardiologists who are up to date on this subject. I live in the Palm Beach County area of Florida where we supposedly have these great heart doctors--over the 2 1/2 years since I was diagnosed, I think I have seen 5 of them. Not one has been close to up to date--it really scared me to realize that I was reading medical articles, thanks to Hans and others here, that the cardiologists weren't. Major concerns I have had:
1. All 5 prescribed digoxin. I just turned 54, have run several marathons and remain very, very active, with no other heart issues. When I pointed out to the most recent one that the Amercian College of Cardiologists and the Heart Association say digoxin is contraindicated for laf, he couldn't come up with a single reason to be on it, so I quit.
2. When I was in the hospital, early on in this adventure, they gave me meds to lower my HR. When I went back into NSR, they continued the meds, though I asked them to stop. My sleeping HR in NSR, but on the meds, was going down to around 30 (it is normally in the 40's at rest) and setting off all sorts of alarms. That cardiologist, who was on call or something, started talking about giving me a pacemaker because my HR was so low. We disagreed and I finally got another cardiologist to agree that I didn't need rate control at that point. If I had not been slightly educated, I might have walked out of that little stay with a pace maker!
3. After I got educated, my episodes tended to last 4 or 5 hours. After 9 months afib free, I had to give the doctor a written request that I discontinue coumadin, so he was "protected". Our "deal" is that if I stay in afib 48 hours, I go to the ER. Since we made our "deal", I go into afib infrequently, and never more than 4 or 5 hours.
4. For me, light walking seems to help me convert. When I was going to the hospital the first 3 times, they wouldn't let me move and kept me in bed-those hospital episodes lasted about 36 hours, 12 hours and around 30 hours. At home, I think 6 hours is the longest. But they won't listen to you.
I have given up on finding a local cardiologist that actually cares about me as a patient. With the insurance issues in Florida, you have limited choices in the first place and the docs are more worried about getting sued than treating you as an individual patient. Instead, I rely on information I get here and from medical articles and do my best.

How's that for venting? Now, what are the risks of stopping the propafenone on a regular basis and trying it on demand? Thanks again, John.

Doug

Actually I am not a doctor, but rather a chemical engineer (M Sc in Chemical Engineering) looking for answers to control my LAF of 13 years standing.

I doubt that you will be able to find the reference re. the on-demand approach on the web; however your nearest university library should have a copy.

The full reference is:

Nassir F. Marrouche, Johannes Brachmann, Jens Guenther, Volker Schibgilla, Walid Saliba, Gery Tomassoni, Salwa Beheiry, Ennio Pisano, Dianna Bash, The Cleveland Clinic Foundation, Cleveland, OH, Klinikum Coburg, Germany.

Oral Bolus of IC Antiarrhythmic Drugs for Atrial Fibrillation: Outpatient versus Inpatient Administration.

It was published on page 98A of

Supplement to Journal of the American College of Cardiology, March 19, 2003, Volume 41, Number 6, Supplement A.

Hope this helps

Hans

Hans, I think the American College of Cardiology may have something on its website. [www.acc.org]

I recall seeing something on this, but it may have been here or may have been there.

To Everyone:

How can one prove that the act of taking the meds caused you to convert back into NSR ? Perhaps you would have converted without the drug(s).

Thanks, Nancy

You can't, Nancy. Probably some % of episodes convert without meds, some $ converts more quickly and some % has no difference. The only way to determine things like that is statistically, with large groups who are monitored.

Nancy,

After being out of rhythm for 1.5 mths back in April and May, I used flec. again, as it had worked for me for about a year, but stopped working. The first time I tried it, nothing happened, so thought, I would try again, a week later, and this time took more, and then took a second dose. It worked. I have been taking since, and have stayed in rhythm, with the exception of one breakthrough. I do not think I would have converted without the use of flec.

Richard