Experience with amiodarone

[Dizzy3]

Hi, I have had 2 previous ablations for paroxysmal atrial fibrillation and previously on flecainide bisoprolol pravastatin and apixaban. I have had episodes of AF and more recently atrial flutter. My arrhythmia nurse took me off flecainide because of the atrial flutter and put on solatol which didn’t keep me in rhythm and Iam now in persistent AF and prescribed Amiodarone. I have read so many negative comments and side effects I am scared to start this drug. I am waiting for a cardio version and listed for a third ablation. I would be interested in your experiences of this drug.

[wilsond]

Were you taking bisoprolol alongside flecanide as recommended?Flecanide alone can instigate flutter.

I can't comment on amiadarone for myself but my friend was on it whilst awaiting cardioversion. It was for a few months, and the cardioversion was successful. 2 years on she has had no reoccurrence and off ablation list.

Are you able to speak to your consultant about this,rather than ' just' the arrhythmia nurse to perhaps put your mind at rest or raise 😟 concern?

Best wishes x

[Dizzy3 in reply to wilsond]

Hi yes I was on bisoprolol as well. I haven’t been seen by a consultant yet but I’ve been referred to a electrophysiologist for the ablation.

[Circular in reply to Dizzy3]

I (74 yr old male) was on Amiodarone for more than six years and ended up with chronic hyperthyroidism. I lost 10 kilograms (from 80 kg to 70) in the space of 4 months and had very low energy. The drug has high levels of iodine which can disrupt thyroid function when used over a long period.It has taken six months for me to get back to normal.

The Amiodarone was replaced with Propafanone.

The lesson from my experience is to have frequent blood testing to monitor thyroid function while you’re taking Amiodarone.

[Dizzy3 in reply to Circular]

Thanks for your reply. Yes I’ve read about issues with the thyroid I will be making sure I am checked regularly. I am glad you are feeling better now.

[TracyAdmin Partner]

Hello, have you downloaded the Amiodarone patient information sheet from the AF Association resources tab? api.heartrhythmalliance.org...

Alternatively, please feel free to contact our Patient Services Team for further advice.

information sheet

[Dizzy3]

Thank you for this. I did get a fact sheet from the pharmacy and the nurse discussed the risks.

[diminished7th]

Hi Dizzy, I had been in persistent Afib from Feb 2022 when my EP prescribed amiodarone in Dec 2022 with the view of having a cardioversion in January 2023 and remaining on amiodarone for max 1 year. . After 5 weeks on the drug I self converted without the need for the cardioversion. The EP stopped the drug in Oct as he felt it had done it's job. I have been in sinus rhythm since January 2023. I had no no side effects other than cold hands and had blood tests every 3 months, all of which were normal with the exception of 1 abnormal thyroid reading which actually turned out to be due to a viral infection. I see the EP in April and hope to still be ticking normally.

Good luck with it and I hope it is as successful for you as me as I know others have had dreadful experiences but we are all different so you might be one of the lucky ones too.

Sue

[Dizzy3 in reply to diminished7th]

Hi diminished 7th, thank you for your reply. It is good to hear your positive outcome. I hope mine will reverse back into sinus rhythm. I have started amiodarone today so I will keep a close eye on any side effects.I hate the dizziness no energy to walk anywhere I’m experiencing in AF.

[BrotherThomas]

I was on amiodarone for just over two years and came off it about 18 months ago. I had no problems with it in terms of side effects over that time but it didn't work for me. It didn't produce a spontaneous reversion to NSR in that time and neither did it prolong my time in NSR after a successful cardioversion. I took it for about 18 months before the cardioversion.

[JoDogBlue]

I was on amiodarone for 12 months, leading up to and following a cardioversion. Finished in October so now off it for 3 months. I'm still in sinus rhythm. Although I know it takes a long time for amiodarone to leave your system I'm told there's a small chance I'll stay in sinus rhythm. Because I felt better after the cardioversion I was given the option of and have opted for an ablation.

So amiodarone has helped but I felt lousy during the loading period, lots of sleepless nights. I was very sensitive to sunlight, burning very easily. All my tests were normal but I'm glad I'm off it.

Of course everyone is different but if it helps and you test OK it's probably worth it.

[Dizzy3 in reply to JoDogBlue]

Thank you that’s reassuring. I have just started the loading doses my heart is still bouncing around and I too have been having sleepless nights. I hope it helps it to settle down. I am booked for a cardio version and listed for my third attempt of ablation. Not sure how long it will take.

[Ppiman]

I have posted a link many times to a study that showed low-dose amiodarone to be a safe and effective drug. There are people here who seek ill of it but it is a highly regarded drug as it works well and is uniquely, unlike others not "pro-arrhythmic" so is much safer in that respect.

If you search for "low dose amiodarone safety" in Google, you'll find the study at the top of the list of search results. It will help alleviate your fears.

Steve

[Dizzy3 in reply to Ppiman]

Thanks I appreciate your reply and I will definitely have a look at the study.

[Ppiman in reply to Dizzy3]

I would have posted the link but we have been asked not to add in links without prior admin approval. It's a typically heavy-weight clinical paper but the conclusion is clear and easier to read.

Steve

[Dizzy3 in reply to Ppiman]

I have just been having a look. I’m just worried I’m having to take a high loading dose for the next 3 weeks. I can only monitor and report any side effects.

[Ppiman in reply to Dizzy3]

That’s normal with the drug, I gather, so is nothing to fear at all. I would carefully monitor myself as you will no doubt be doing but do take care not to make connections that aren’t real. Over the years, that’s been the cause of many of my health fears.

It’s over the longer term that the drug can cause complications and only in higher doses as it contains a lot of iodine which lodges in many places in the body, I gather, beyond the body’s ability to metabolise it easily and quickly (hence the very long half life). The eyes and lungs, if I recall, are prone to this so check ups along the way are mandatory.

I gather, though, that the low dose use of amiodarone is very different from how it was first extensively used and much of the literature and people’s feelings about the drug are conditioned by these now discontinued, earlier inappropriate uses.

It’s said to be far safer in other key ways compared with alternative anti-arrhythmic drugs as it, uniquely, lacks any pro-arrhythmic action on the ventricles.

There’s been a lot of attempts to synthesise a version of the drug without the iodine component, I understand, over the years but, so far, nothing matches its effectiveness.

Steve

[Jajarunner in reply to Ppiman]

Excellent study. Thanks for sharing. I'm on 100 and it's working brilliantly...touch wood!!

[Lilypocket]

Worked very well for me - was on it for 6 weeks post ablation as had a few issues. I think it is very good drug for short periods to get the heart rate back to NSR. It doesn't work for everyone but it was a good solution for me. At the very beginning my HR slowed with big gaps in the night but I reduced the dose with dr's approval and from then it worked perfectly and I was checked regularly while on it.Good luck

[Dizzy3 in reply to Lilypocket]

Thank you

[BeeBee79]

Hi Dizzy,

I'm currently on Amiodarone - was prescribed it after my 4th ablation for 3 months. Only side effects were such a sensitivity to the sun and took almost all of my afib away. I had a very good summer as I reduced slowly but then it call came back. I'm now back on amiodarone as they discuss cardiac surgery mini-maze for me. I have regular drug tests and i do think it's been affecting my thyroid as despite very limited diet, I am just unable to lose weight.

I see nothing wrong with being on Amiodarone whilst waiting for your ablation as long as your monitored......

Good luck

[Dizzy3 in reply to BeeBee79]

Thank you I hope your procedure goes well.

[Visigoth]

I’ve been on amiodarone for nearly three years and it’s been absolutely fine for me. I felt a bit weird during the loading dose period and I have regular blood checks to test thyroid etc, but I can honestly say that it’s been a wonder drug for me. Everyone is different of course but I’m hoping I can be on it long term - I’m taking the lowest dose.

[Dizzy3 in reply to Visigoth]

Yes it’s the loading doses I’m worrying about so much at once. I’m still in atrial fibrillation and it is symptomatic I can’t walk far feeling dizzy and exhausted. I’m hoping it will help until I have my ablation. I pleased to hear positive stories as all I keep reading are negative ones.

[Visigoth in reply to Dizzy3]

I totally understand- the negative stories put me off as well and I had to pluck up a lot of courage to start taking amiodarone! But I’m so pleased I did.

[Jajarunner]

Been taking for 11 months. It works brilliantly but is messy with my thyroid a little and J have halo vision BUT I have got my life back after three years in which I had three failed ablations and 11 cardioversions. I'm on the list for a fourth ablation though with little faith it will work. If it wasn't for the side effects I'd stay on amiodarone forever. My arrhythmia nurses tell me it is a great drug with "side effects for some".

[Dizzy3 in reply to Jajarunner]

This is very reassuring thank you. I hope the next ablation works for you.

[Jajarunner in reply to Dizzy3]

That's very sweet of you, thank you