Amiodarone yet again...

[ClickerTicker]

I have been on the dreaded amiodarone for about 18 months. Have read all about the side-effects -- I've got the eye deposits and sun sensitivity -- and really, really, want to ditch the stuff.
My MVR was in 2002 and I initially went into AF just before I left hospital - about 6 weeks after the op. They cardioverted me and I had no more occurrences till Jan 2004. Was loaded up with amiodarone and have been on it ever since.
I've my annual appointment with my cardiologist next week and want to insist that I stop the amiodarone.
Tried a while back and was given the response that:
- we've got lots of patients using amiodarone without significant problems
- for my conditions, MVR and acute heart failure there was no other effective option (my LVEF is bouncing along the floor at somewhere between 10 and 20).

Anyone else with this combination or suggestions?

 

[hensylee]

brother had cardioversion and it held for awhile, too. Now he's in a-flutter all the time and sometimes in a-fib. He was on amiodarone for 1 yr, 4 mos. It takes a very long time for it go get out of your system.

I expect, if you look further (or if your cardio will) you may find that there are safer meds. I had a fit when bro went to ER for a-fib and the dr mentioned putting him on amiodarone and I told him that he knows there are other meds that will do the job and my brother is NEVER again to be put on amiodarone. He listened to me.

I wish you good luck.

You might try asking Dr Rich in about.com - heart disease/cardiology. He is an electrophysiologist; he will answer your questions himself in a short time, but he won't give you recommendations of any kind - just general information.

 

[Ross]

Sotolol, otherwise known as Betapace. Amiodarone should be a last choice drug, not a first.

http://www.betapaceaf.com/patient/in_the_news/pr2.jsp

 

[Cris N]

I went into A-fib 2 days after I was released from hospital following MVR. I wound up on amiodarone for 30 days. Electrophysiologist wanted me off as soon as possible. I've been off it for 2 months now... obviously there's still some in my system but I've had no problems since.

Ask your cardio for a referral to EP if he/she doesn't want to prescribe something else. Just because "we've got lots of patients using amiodarone without significant problems" is a pathetic reason for keeping someone on amiodarone.

Cris

 

[ClickerTicker]

Thanks to you all. Great advice. I'll definitely ask to see an Electrophysiologist asap.
Ross, regarding Sotolol/Betapace I see the site referenced warns that "BETAPACE can worsen congestive heart failure". My heart failure is due to the heart muscle being damaged by endocarditis so I'm not sure whether the congestive heart failure caution applies.
I self-test and self-dose so I'm not worried about the roller-coaster INR that coming off amiodarone will initiate. Apart from the first few days, I managed my own INR during the intro of the stuff.
I forgot to mention one other amiodarone nasty... I have brownish discolouration on my lower arms around the canula sites they used to initially pump the evil stuff in.

 

[Cris N]

I forgot to mention one other amiodarone nasty... I have brownish discolouration on my lower arms around the canula sites they used to initially pump the evil stuff in.

The one I was worried about was my skin turning bluish-gray. The dreaded Smurf Syndrome with the possibility of it being non-reversible!

Cris

 

[gadgetman]

Questions about this drug continue to pop up. I guess it all comes down to trusting your Cardio (or whomever) to do no harm. I guess I could be like the overweight patient and search until I find a fat doctor, the smoker who searches for the smoking doc or the sugar loving patient searching for the doctor who thinks SUGAR is good for you. But I guess I'll stay with my Cardio who says "I've got lots of patients using amiodarone without significant problems". I've only been on 200 mg twice a day. I don't remember them giving me MEGA doses while in the hospital. I continue to voice my concerns to my Cardio. So far (I know the LONG TERM EFFECTS) I've not experienced any warning signs.

I did a Google search on the "truth about Amiodarone" and found a good quote by a French Doctor. He (I don't have it in front of me, its on my home computer and I'm at my daughter's) said that many things are written about the BAD things of Amiodarone but he compares it to the reports about the tragic train wrecks. He said you don't hear about the thousands of hours where trains operate on time with no injuries, just the stories about the wrecks. Just check out the BAD things aspirin can do to SOME people and you will think twice about the harmless aspirin.

The bottom line is you must reach a point (or run out of doctors during your search) where you trust your doctor to "do the right thing". That does not mean doing things without question just because he/she is a doctor. You must question everything (and I mean EVERYTHING) they plan on doing to "we" (must be a medical term). But it comes a time when you must decide to "go with your gut" or place trust in someone else. There is no "easy answer". I have full trust in my Lord but sometimes you must decide to either trust He will just heal you or seek someone who will be guided by His hand to repair what is broken. Life ain't easy.

May God Bless,

Danny

 

[Kathleen]

Tikosyn

Tikosyn

I have started on Tikosyn while in the hospital 250 mcg 2 times per day. Tried all the anti arrythmic meds including amio--have congestive heart failure also. I have not had one side effect from this drug because there really aren't any to speak of. The doctors had to administer in the hospital since EKGs were required to measure the q waves 2 to 3 hours after each ddose for 3 days. Ten days and still fine. Might be another med to add to your question list...although only certain pharmacies can fill the prescription.
Kathy

 

[ClickerTicker]

Questions about this drug continue to pop up. I guess it all comes down to trusting your Cardio (or whomever) to do no harm.
Danny

Danny, to some extent I agree with you. Almost all drugs have a warnings insert pretty much guaranteed to stop you sleeping at night. One of the things that makes me nervous about amiodarone though, is the ambulance chasing tort folks piling in. Just do a google search on amiodarone and lawyer and you'll come up with 39,000 hits. Although most of the hits are probably spurious, the highly ranked ones make me nervous. I only got 620 with Tikosyn and lawyer...

 

[Ross]

Let me interject something here, one of my best friends has been brought off of Amiodarone about a year ago. It has played total havoc with his liver and was endangering him. He had been on it for nearly 3 years. As soon as they took him off, he went into afib and has since been cardioverted 4 times. They now have him on what they beleive to be the proper dose of Betapace and he is doing well with it.

It may or may not be an option, but if you can stay away from Amiodarone, you'll be far better off in the long run.

 

[hensylee]

any med that has 39,000 hits connected w/lawyers...... reckon there might be a reason for it? Where there's smoke...... Please consult an EP can't hurt, you know.