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Anyone have experience with amiodorone as an arrhythmia treatment?
I’ve had almost 2 years of treatment for PVCs. Two ablation treatments failed to resolve these extra beats and left me with RBBB. Flecainide (100mg 2x/day) provides considerable relief but I still have periods of symptomatic PVCs nearly every day. My EP has suggested starting a course of amiodorone. Anyone have experience with amiodorone after Flecainide?
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EP had my husband on Amiodarone for 1 month after ablation to help with BP and Rhythm. Then changed him to a different BP med which seems to be working thus far. 🤞
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1 ReactionHi - Just to add my experience with Amiodarone... I was put on 400 mg when I first went into AFib. After a year I was very short of breath and nauseous every day. My lungs are scarred permanently from Amiodarone, and I was on steroids for 4 months. In addition, it dropped my heart rate into the 30's. Since Amiodarone stays in your system for up to 6 months, my heart rate did not recover (I passed out), and I then had a pacemaker implanted. Yes, Amiodarone is a very powerful drug and certainly has its uses. I personally will never take it again (although my EP suggested it). For those who do take it, I highly recommend being monitored for the possible side effects. I wish I had been.
Wow! So sorry to hear about this. Pulmonary toxicity is one of the major side effects. Some types of damage are reversible, others are not.
I’ll add my experience here.
I was on amiodarone for maybe a year and a half for heart arrhythmia(vtach among other things)stemming from scarring after mitral valve replacement. I never trusted the drug, so I took myself down to the lowest possible dose(100mg/day, then 50). I never took the full loading dose either. Not telling other people to do what I do, but I’m glad I took the risk. I will add that my ep did not think the type of vtach I had was life threatening.
Well, after maybe a year my thyroid tsh went too high. The drs pa said not to worry; this was to be expected. That doesn’t translate to good.
I relocated to another state and my new pulmonologist/sleep dr did another pft, which showed decreased lung function indicative of restrictive lung disease.
I took myself off the drug immediately, made an appt with my new cardiologist to tell him what happened, and he was totally in agreement.
I have so far been able to maintain on metoprolol, though he said we could try calcium channel blockers if the PVCs got too bad. I also had an ablation, which helped.
I consulted with Mayo Clinic, who said I did not have restrictive lung disease thankfully.
I’ve never done a repeat pft, but I think I’m ok. I’m probably afraid to. Other tests like the 6 min. walk test and VO2 max stress test have come out well. The thyroid quickly went back into line.
My opinion is to try everything else first. Yes, amiodarone works but it’s also a very dangerous drug.
From what I read, it can cause damage fairly quickly even at relatively low doses.
I also read that the FDA approved it under pressure from European pharmaceutical companies
making it one of the few drugs ever approved without randomized clinical trials.
I wish you and all the others exposed to this drug healing
and safety.
Please everyone start doing your own research.
I should add it’s important to do our own research because unfortunately drs don’t always tell us everything. I’ve had many wonderful drs but enough negative experiences to convince me this is essential.
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2 ReactionsHow unfortunate for you! I can't believe you went unmonitored all that time. The literature I found with just a couple of searches five years ago told me pretty much all I needed to know about amiodarone, including that it needs regular follow-up to see how one's system is handling the iodine load. I feel that it is tantamount to malpractice for someone on such a drug to not be assessed at least once a month for the first six months.
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2 ReactionsHi all,
Since I started this chain in May of 2024 (after 2 ablations) I tolerated symptomatic PVCs at a load of about 50% while continuing Flecainide 100mg twice daily. Early this year my EP again suggested amino so I sought a second opinion at Northwestern. In the course of our original meeting the EP asked all the usual questions including how much do you drink. I replied honestly 3 beers in the evening most days (I’m retired living in Florida, it’s what we do here!). She suggested I taper off the beer over 30 days, then wear a Zio monitor for 14 days. I have not had a beer since that day in February. After a month of irregular heart rates (30-160) the PVCs subsided and my monitor showed < 2% PVCs. She then suggested I cut the Flecainide to 50mg twice per day. I’m feeling better than I have in 2 years and will cut Flecainide entirely in August if I’m stable. Headaches and fatigue have largely resolved as well. Do I miss the beer? Oh, yes, but NA beer is way better than what I tolerated for those 2 years! I hope this long tale reaches someone who will benefit as I believe I have.
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2 ReactionsFantastic! It just goes to show that a change in a routine or practice can often make the difference in the burden of ectopy. For some it's caffeine, for others it's alcohol, while for others it's a currently prescribed medication, too much calcium in the diet, too little magnesium....the list goes on. I'm happy you have found relief.
Thanks for your comments and your story. That was my first episode of AFib. I saw my cardiologist (At that time I had never heard the term "electrophysiologist"). I just accepted what he said about needing a blood thinner to prevent a stroke and the Amiodarone for the AFib. At that time I did very little research - thought AFib was like diabetes - something you had and treated (like taking insulin). Then I started researching and found that most people are started on Amiodarone in the hospital to make certain they tolerated it and not just given 400 mg twice a day! In the years since, I have become much smarter! I research everything, won't take a new medication, unless I have learned everything I can, and generally get the opinion of other doctors. My next 3 episodes of AFib I approached very differently and saw an electrophysiologist, not a cardiologist. My EP wants to do an ablation; today I saw another EP for a second opinion. My amiodarone experience has made me very cautious. I have permanent scarring in my lungs; the four months of steroids reversed some of the damage - but not all. Like you, I have had many wonderful doctors, but enough negative experiences to convince it is essential to do my own research and question EVERYTHING!
I agree, Gloaming! I think it was inexcusable for that doctor to not do follow up! I know it was during COVID and nonessential tests were difficult to get - but I do believe that being on 800 mg of Amiodarone should have been monitored. As I said above, I am extremely cautious about anything now and do lots of RESEARCH! One source for me is this Mayo Clinic Connect!
I took Amioderon for 3 years and after a prolonged qt on cardio gram and motor balance and tremors I stopped. The Afib returned but the motor symptoms never left and has progressed. I never saw it coming neither did the cardiologist