Experience with amiodarone?

Posted by insley @insley, 5 days ago

I’ve been taking Flecainide 100mg BID for about a year. It seems to be losing effectiveness for calming PVCs. My EP is suggesting amiodarone 200mg once per day. Anyone had relevant experience or helpful advice?

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What people never seem to mention when they say how "terrible" amiodarone is, is that side-effects are strongly dependent upon the dosage. My mother has been on 100 mg amio daily for 24 years for paroxysmal afib. She has had NO side effects in 24 years--and she has never had another atrial fib episode! It completely controls her afib. She gets the recommended blood tests every 6 months for liver, lungs, etc. When people take 400-800 mg daily, you can imagine how much more medication is in their bloodstream--no wonder they are getting long-term bad effects. Acc. to my cardiologists, amiodarone is considered the best anti-arrhythmic for atrial fib, and they recommend it to me if flecainide ever stops being so effective for my paroxysmal AF episodes. My cardio's are adamant not to be afraid of amio at a low dose, 100-200 mg per day; and if any side effects began to show up, you would stop and go onto other options. Hope this somewhat balances all of the negative information. Prayers for your heart...

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@jc76

@gloaming
If you can see from my post the emphasize is going through your doctors to see what is best for you as what works, or one may not be best for you.

I even post a caveat when asked about what medication I take. I have passed on to my doctors about supplements and medications that have been mentioned on MCC so that my doctors recommend which medication I should take not what others take.

Some of the OTC recommendations I was told not to take some others say try as we don't see any contradictions to trying it.

As you can see almost everyone has and had a different reaction to Amiodarone. It is an immensely powerful drug and does what it is supposed to do but all research shows it does have a high toxic effect on the body.

The bottom line is always check with your doctors about any medications and OTC supplements and follow what is prescribed to you.

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I answered insley with the quoted question of his. Did you take it that I was detracting from anything you said?

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@drdianeschneider

What people never seem to mention when they say how "terrible" amiodarone is, is that side-effects are strongly dependent upon the dosage. My mother has been on 100 mg amio daily for 24 years for paroxysmal afib. She has had NO side effects in 24 years--and she has never had another atrial fib episode! It completely controls her afib. She gets the recommended blood tests every 6 months for liver, lungs, etc. When people take 400-800 mg daily, you can imagine how much more medication is in their bloodstream--no wonder they are getting long-term bad effects. Acc. to my cardiologists, amiodarone is considered the best anti-arrhythmic for atrial fib, and they recommend it to me if flecainide ever stops being so effective for my paroxysmal AF episodes. My cardio's are adamant not to be afraid of amio at a low dose, 100-200 mg per day; and if any side effects began to show up, you would stop and go onto other options. Hope this somewhat balances all of the negative information. Prayers for your heart...

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I greatly appreciate your input. My EP is now recommending amio 200mg to replace Flecainide 100 mg BID. My quality of life is good but I have had a recent increase in palpitations that seem to be PVCs from a junctional source. This has been going on for 2 years. 2 ablations have failed to eliminate these symptoms but I can ignore them much of the time except when resting quietly. I am a 73yo male who exercises everyday 1-2 hours.

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I'm glad you're getting good input. I am a 70yo female with similar exercise habits, and I took 100mg amiodarone. It was REALLY terrible but now, I'm doing well on 250mcg Dofetilide. I hope that's helpful. And good luck with your decision-making!

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@woodside

I'm glad you're getting good input. I am a 70yo female with similar exercise habits, and I took 100mg amiodarone. It was REALLY terrible but now, I'm doing well on 250mcg Dofetilide. I hope that's helpful. And good luck with your decision-making!

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Thanks for the input! If I may ask, what is you diagnosis?

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@drdianeschneider

What people never seem to mention when they say how "terrible" amiodarone is, is that side-effects are strongly dependent upon the dosage. My mother has been on 100 mg amio daily for 24 years for paroxysmal afib. She has had NO side effects in 24 years--and she has never had another atrial fib episode! It completely controls her afib. She gets the recommended blood tests every 6 months for liver, lungs, etc. When people take 400-800 mg daily, you can imagine how much more medication is in their bloodstream--no wonder they are getting long-term bad effects. Acc. to my cardiologists, amiodarone is considered the best anti-arrhythmic for atrial fib, and they recommend it to me if flecainide ever stops being so effective for my paroxysmal AF episodes. My cardio's are adamant not to be afraid of amio at a low dose, 100-200 mg per day; and if any side effects began to show up, you would stop and go onto other options. Hope this somewhat balances all of the negative information. Prayers for your heart...

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@drdianeschneider
I think the bottom line with amiodarone is it is a very strong drug and does what it is suppose to do. It is very well researched and documented over decades now regarding toxicity. Testing is required when on it because it can cause toxicity.

Being on low dose of any medciation lowers the risk of side affects. I see even though she is on low dose she does blood test every 6 months looking for toxicity. Hats off to her doctors for doing this.

I will say if the medication stopped all her AFIB that had to be a great benefit to her and reduced her anxiety stress drastically. Stress and anxiety can add to having AFIB and VFIB. I had to do eye exams for several years after I got off amiodarone as one of the side affects was eye damage.

It was the emergency room that put me on amiodarone not my Mayo HF cardiologist or my Mayo EP.

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Bottom line, and I always encourage everyone to take ownership of their situation, good or bad, confusing or scary, undefined or known; start with google searches of formal academic research which is widely available at many websites. Journal of American Medical Association, British Medical Journal, National Institutes of Health, etc. Read everything, write down some puzzles or questions that are never addressed in what you read, and then seek answers from real people...in the field. Much of what you find can be read by the lay person, even if you have no formal training. They often have glossaries, or they spell out a term the first time and then put the abbreviation they'll then use in parentheses [ atrial fibrillation (AF)]. I have to reread some paragraphs once or twice to get a better gist. But you end up with an idea of 'where this is going'. And, you'll have some idea of options, their pros and cons, and what you're likely to want to ask of your physician. I did that for a catheter ablation to rid me of the awful symptoms associated with my atrial fibrillation. My cardiologist finally sent me to a great electrophysiologist (EP) on Vancouver Island, where I live. After two ablations inside of eight months, the second one has had me blissfully in NSR (normal sinus rhythm) for coming up to two years now.

Knowledge is power. Keep a reasonable balance of power in your relationships with health care experts by learning what they're thinking and if you should agree to what they propose, or if they'd support an alternative that you prefer.

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@insley

Thanks for the input! If I may ask, what is you diagnosis?

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I have paroxysmal atrial fibrillation.

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@gloaming

Bottom line, and I always encourage everyone to take ownership of their situation, good or bad, confusing or scary, undefined or known; start with google searches of formal academic research which is widely available at many websites. Journal of American Medical Association, British Medical Journal, National Institutes of Health, etc. Read everything, write down some puzzles or questions that are never addressed in what you read, and then seek answers from real people...in the field. Much of what you find can be read by the lay person, even if you have no formal training. They often have glossaries, or they spell out a term the first time and then put the abbreviation they'll then use in parentheses [ atrial fibrillation (AF)]. I have to reread some paragraphs once or twice to get a better gist. But you end up with an idea of 'where this is going'. And, you'll have some idea of options, their pros and cons, and what you're likely to want to ask of your physician. I did that for a catheter ablation to rid me of the awful symptoms associated with my atrial fibrillation. My cardiologist finally sent me to a great electrophysiologist (EP) on Vancouver Island, where I live. After two ablations inside of eight months, the second one has had me blissfully in NSR (normal sinus rhythm) for coming up to two years now.

Knowledge is power. Keep a reasonable balance of power in your relationships with health care experts by learning what they're thinking and if you should agree to what they propose, or if they'd support an alternative that you prefer.

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Thanks! Through this experience I’ve become a believer that I need to be informed and willing to be my own best advisor. I have read widely in the literature (retired physiology professor) and realize I need to listen to my symptoms. I keep extensive daily records (BP, Kardia, Apple Watch) and I’m always interested in the experiences and thoughts of others.

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@gloaming

Bottom line, and I always encourage everyone to take ownership of their situation, good or bad, confusing or scary, undefined or known; start with google searches of formal academic research which is widely available at many websites. Journal of American Medical Association, British Medical Journal, National Institutes of Health, etc. Read everything, write down some puzzles or questions that are never addressed in what you read, and then seek answers from real people...in the field. Much of what you find can be read by the lay person, even if you have no formal training. They often have glossaries, or they spell out a term the first time and then put the abbreviation they'll then use in parentheses [ atrial fibrillation (AF)]. I have to reread some paragraphs once or twice to get a better gist. But you end up with an idea of 'where this is going'. And, you'll have some idea of options, their pros and cons, and what you're likely to want to ask of your physician. I did that for a catheter ablation to rid me of the awful symptoms associated with my atrial fibrillation. My cardiologist finally sent me to a great electrophysiologist (EP) on Vancouver Island, where I live. After two ablations inside of eight months, the second one has had me blissfully in NSR (normal sinus rhythm) for coming up to two years now.

Knowledge is power. Keep a reasonable balance of power in your relationships with health care experts by learning what they're thinking and if you should agree to what they propose, or if they'd support an alternative that you prefer.

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@gloaming
Great advice!

I had ablation for a RV and it worked. EP (Mayo) was hesitant to do LV where I was having increased PVCs. Wanted to try medications first and put me OTC magnesium and a heart rymthm drug.

Worked very well for me. The random LV tacacardia ending and my PVCS drastically reduced. He confirmed (Mayo EP) that anxiety, depression, and mental health have so much impact on your physical health especially with heart rhythm issue. I could not agree more. So, even though I rely on medicationss I really try to do what brings me happines and a better outlook to reduce anxiety as much as I can.

Glad you got results and learned a new appreviation NSR (normal sinus rhythm

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