Question about amiodarone

Diagnosed with chronic afib 14 years ago and my cardiologist wanted me to take amiodarone. After researching possible side effects (yikes!) I got a 2nd opinion and went the digoxin/warfarin/blood pressure meds route instead. I recently learned of the potential downsides of living with afib and went to my EP to discuss my options. A cardioversion restored sinus rhythm for 15 minutes but my afib returned. I had a cryoablation procedure last week and managed less than two days of sinus rhythm before going back into afib. My EP prescribed amiodarone and possible cardioversion. This is my 2nd day on amiodarone and I'm pretty sure my pulse is mostly normal and I'm having no obvious side effects. However, the toxicity of amiodarone is well established. I googled for supplements that may reduce the risk of taking the drug and found studies (using rat tissue and live hamsters) that showed Vitamin E and Vitamin C supplementation actually reduced at least some of the toxic effects of the drug. I'd like to know if anyone has experience with this or has a recommendation.

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  • My father was on amiodarone for about 6 months, it did help the AFib and he didn't have the side effects other than over a period of a month he got what you described but it all went away once he got used to it. Interestingly though, we got a second opinion from a reknown cardiologist who told us that amiodarone is not so much of a wonder drug for Afib, not sure why. We asked him what he meant by that and his response was that the potential damage to the liver, lungs and kidneys outweighs its benefits to Afib. Hopefully you will have results after the crayablation so you won't need to continue taking it. Quite interestingly though reading through your post you refer to the downsides of living with Afib.- could you elaborate on this a little bit more please? I am only asking because it has always been downplayed to us by my father's EP as a normal condition that someone learns to live with!

  • I appreciate your feedback. Starting about a year ago, I began to feel some discomfort in my chest at times, ie sleeping on my left side. Since I was diagnosed with afib, I was rarely aware of my irregular heartbeat but suspected that it was now causing my discomfort. The thing that triggered my return visit to the cardiologist was a blurb in the Consumer Reports ON HEALTH publication (Dec 2016) stating "AFib's Other Threats: It's long been know that the irregular heart rhythms of (afib) raise stroke risk, but a recent analysis of 104 studies found that AFib is also associated with coronary heart disease, chronic kidney disease, heart failure, and sudden cardiac death." My cardiologist added dementia, a 5 year loss in expected lifespan, and a few other grim possibilities to ON HEALTH's list. My plan to live with afib proved to be a bad idea so I explored my options with the cardiologist. Because I have great trust and respect for him, I started taking amiodarone a couple of days ago following last week's ablation procedure and subsequent return to afib, and I must admit that I now feel better than I have in a long time. I'm hoping the need for amiodarone proves to be a short term requirement.

  • Thank you so much for your feedback, too. I wasn't aware that Afib shortens life expectancy, if anything my father's EP has always taken examples of other patients of his who live with Afib constantly and one of them, allegedly, being very good at tennis! So my father is 76 and another EP has recommended crayo ablation to him, and he hasn't had any ablations of any kind done. Now I am wondering whether he should explore the crayo ablation given this frightening fact of shortening life expectancy and causing dementia..

  • I made my decision to 'live with it' 14 years ago without any knowledge of the possible consequences. I wasn't comfortable with popping a warfarin table every day but, for the most part, afib did not interfere with my life in any way so living with it seemed like a good option. In fact, afib prompted life style changes that actually improved my health to this day. It's clear that afib affects people in different ways and if it results in poor health, the possible outcomes are likely to be affected. btw I am a few years short of your dad's age and can recommend consideration for proceeding with an ablation. The hardest part for me has been remembering that I need to take it easy for the first month or so following the ablation!

  • Thank you, that is very comforting to know and very helpful indeed. Hope all goes well with your Afib:)

  • Amiodarone worked well for me but I insisted on coming off it, after three months. The long term effects can be terrible and even fatal. Not only that I was beginning to have eye and lung problems.

  • Tony, thanks for your feedback. In spite of my trepidation, I felt much better with what seems like NSR almost immediately after starting amiodarone a couple of days ago. I don't know what my EP plans for the long term if my heart rhythm does not remain stable but amiodarone won't be an option after the first month or two if I have a choice.

  • I was put on amiodarone a month ago following my cryoablation which the following day put me into atrial tachycardia. I had a cardioversion which didn't work so because my heart was racing so much I was put on amiodarone. My consultant said to take it for five weeks to see if my heart went back to NSR. It has certainly stopped the racing heart and I am now only having a few ectopics and short bouts of AF. So for me it seems to be doing its job.

    I haven't had any side effects either which is fortunate. However I am very aware of the long term effects this drug can have on the body and hope that when I stop taking it my heart will still be ok. Certainly my consultant said one year is the longest you can take it for. He also warned about being in the sun and the need to ensure you are covered up.

    Because it is such a strong drug I am very nervous about taking anything else with it.

  • Thanks for your feedback. My heart sank when the EP prescribed amiodarone but after two days on the drug, my heart feels like it is back on NSR. At least the churning sensation in my chest went away. Like you, I hope that amiodarone is not needed on a long term basis, and I wish you well in your journey back to NSR.

  • Good morning Thumpr and welcome to our forum. On the top right hand corner of this page you will see a message 'Search AF Association'. If you type over that amiodarone it will throw up lots of posts on this drug.

    Wishing you well.

    Jean

  • Thanks for the tip! I ran across this forum last night, joined it and posted my question without digging deeper. Once I posted it, a list of other related posts was displayed and I realized I could have searched for this subject to look for an answer to my question.

  • Amiodarone is useful short term especially to try and help establish NSR by cardioversion but more than six months or so is not such a good idea. Of course since we are all different there will always be those for whom it proves unpleasant.

  • Thanks Bob! I started amiodarone a couple of days ago and have to admit I feel much better/stronger. Hopefully I won't need it on a long term basis.

  • 26 years ago I was diagnosed with cancer and sought help from a Cancer Help Clinic. They recommended high doses of Vit C. I still take 1000 daily. My old GP said that I had the most expensive urine in the whole of North Wales. Your body only uses as much as it needs. From memory it's a different story with Vit E. You need advice before taking extra.

    I was diagnosed Amiodarone very early in my AF journey. I took it for some months and it didn't have much effect so they swapped it for Soltalol. I was appalled that no warnings were given about its toxic effects.

  • Thanks for the feedback. Following my afib diagnoses, I researched supplements that help to support the cardiovascular system and have popped many pills since then and, yes, a significant amount of my investment went down the drain. However, I have a health heart so I don't consider it a waste of money. The consensus seems to be that the longer you take amiodarone, the greater the chances for a serious side effect. Hoping that I don't need it in the long term.

  • This conversation is most interesting -- thank you to all who have contributed so far. Although I have no experience of taking Amiodarone, I do have a story of sorts. A year ago it was decided that I had paroxysmal AF and I was prescribed Flecainide, Metoprolol, and the anticoagulant Xarelto. From then on, I felt lousy -- in a brain fog, excessively sleepy and physically fatigued and so on, which all pointed to the Flecainide as culprit. On my next cardio visit three months later I mentioned these side effects and he prescribed Amiodarone instead of the Flecainide.

    I had the prescription filled at the pharmacy, but after reading the printed material that came with it I felt I couldn't face any more possible medication side effects, and decided not to take it right away but to hang in there with Flecainide for a while, to see if my body might adjust. When I later told the cardio that I hadn't switched to Amiodarone yet, and my reason for not doing so, he threw up his hands, shaking his head and saying, "You complain about Flecainide, so I give you Amiodarone . . . but you don't take it because of possible side effects! You want perfection but there is no perfection! Why don't you just stop worrying about side effects and relax and enjoy life? Just get on and enjoy life!"

    I patiently replied that enjoying life was exactly what I was TRYING to do -- by avoiding unnecessary risk of bad medication side effects. But he didn't seem to get it. I have a followup appointment today, at which I would like to ask several questions, but he has little time for questions. Which is why I so appreciate everyone who participates in in this forum!

  • I appreciate your feedback and agree this has been an interesting and enlightening conversation. You mentioned Metoprolol. This was one of the meds my cardiologists prescribed 14 years ago and it made me feel awful: I felt like I had a cannonball in my stomach and I struggled to make it from my car to my desk at work every morning. Once I switched to a different med, those symptoms went away. I started amiodarone a couple of days ago and I feel much much better with what feels like a normal pulse.

  • My cardiologist took me off Amiodarone after 3 months following my heart stoppage and diagnosis of afib. It was OK in the short term until my heart began to settle. He said that the long term toxic effects of the drug outweighed its long term efficacy.

  • Thanks for sharing your experience. I haven't had a chance to discuss this with the EP but he prescribed a 3 week supply with 1 refill so maybe it's not a long term situation where toxicity becomes a much bigger issue. I have to admit that I feel better since I started amiodarone a couple of days ago in spite of my concerns.

  • Hopefully, you will be able to maintain normal sinus rhythm and your doctor may determine that you don't need it after a few months. I agree with BobD that it's useful short term. I think it was for me also and I did not experience any issues after my doctor discontinued it.

  • Thank you, Eric. It's comforting to hear that the risks are diminished with short term use, and I am happy with my brief experience with amiodarone.

  • I was put on amiodarone 1 month post ablation. My heart was in constant afib/flutter and there really was no choice. I wasn't thrilled about it due 3 black box warnings. I was to take it for 3M. I took it a total of 2M and 2 weeks. At my 3 M post ablation he said stop taking it (knew i hated it), it's half life will be in my body for sometime. It did bring me into NSR where I have remained.

    I had problems with it. I couldn't handle the first week of the loading phase. I would sleep, a deep rm sleep for 4+ hours a day and stayed in bed very late, again, in a deep rm sleep when I should be getting up. In addition I had light sensitivity to sun and indoor lights. I had no appetite for a while, nothing tasted good. I had no energy. The symptom I despised the most was proprioception issues . I was very careful walking. If I was sitting in a chair, I felt as if my body was falling over. Had many weird scary dreams as well. Had a bad cough for a while as well.

    It is not a drug long term. I am curious to see if I stay in NSR without it. Don't know if it matters as in the midst of this all my mitral valve has deteriorated and they are thinking the afib/flutter is coming from there.

    I feel good now! Hope this helped

    Judy

  • Hi Judy, thanks for your input. I had my ablation last week, started this drug only a few days ago and have had only minor issues with it...so far. On the plus side, I feel much better. I think my pulse is not entirely NSR but it's a huge improvement over how I felt pre-ablation and and when afib returned after my ablation. I'm happy to hear that amiodarone got you to NSR and hope this continues without the drug. Like you, I'm not keen on taking it, especially the large doses in the first week, but I can't complain about its effectiveness. I wish you well in dealing with your mitral valve issue.

  • seems it's always something! My hubby went to ER this past weekend in AFIB first time. A drip of amiodarone got him back into NSR. He did get 2 stents while there which was good. I was surprised with blockages of 75 and 85%, stents were the solution vs open heart surgery. Glad he didn't have to go through that but hope it is the wake up call he has needed for a very long time!

    Glad to hear you are feeling better and the amiodarone isn't having serious side effects. Has it made you lose your apetite?

    Judy

  • No. In fact, I have to watch what I eat to keep from gaining weight. I'm struggling with the need to 'take it easy' because I feel good and my to-do list keeps growing. My problem with weight is likely the result of a reduced level of activity and not drugs. I'm past the first week where I took 800 mg of amiodarone a day (yea!) and am now on 200 mg per day, and my pulse is still seems stable. Will get an EKG next week and a cardioversion if the test shows afib. I am glad stents resolved your husband's blockages and hope that he can avoid further encounters with afib.

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