Amiodarone

[AblatedCyclist]

I had 3 ablations at MUSC to address PVC’s and ARVC, got an ICD after that, then developed AFib followed by an atrial ablation and finally a cardioversion to fix atrial flutter a month after the shocker. I’ve felt fine through all of this - asymptomatic all along. I’m 70 and was a runner for 22 years and then a cyclist the last 25 years. Following the cardioversion my EP reluctantly put me on Amiodarone with the intent to wean me off in 4-6 months. He started me at 200 mg and after a month cut that back to 100 mg. He’s now in Europe for a couple weeks but I’ve got symptoms of the drug now (shaky hands, persistent cough, phlegm, etc). and when I contacted the office my regular cardiologist- who’s super- suggested I stop taking it until he returns. I’m wondering if I should maybe just cut back to 50 mg? Any thoughts?

[Mickey16]

Hi AblatedCyclist,

I would take your Cardiologists advice. I am not medically trained but had been prescribed Amiodarone and as you will be aware, this medication can cause some very serious side affects. I developed serious side affects, and developed a serious cough and coating on the lungs etc. If you are experiencing similar and other side affects you have mentioned, I would consider what your Cardiologist is suggesting and personally , I would follow his suggestion.

[AblatedCyclist in reply to Mickey16]

thanks very much. I’m glad to hear from someone who’s been through Amiodarone and appreciate your response.

[etheral]

The half life of Amioderone is quite long abd a significant amount of the drug remains in your system after many weeks so I would agree with Mickey and just stop the drug. It cause both short and long-term effects on the lungs which should be evaluated. If you get worse quickly, you should be evaluated immediately. Best, etheral

[AblatedCyclist in reply to etheral]

thanks very much- I appreciate your feedback. It’s he,Paul.

[Ppiman]

I've read that amiodarone is safe in low dose but not for all; I would follow medical advice always and stop it since you aren't having symptoms. My understanding is that all treatments are to reduce symptoms, rather than do anything helpful to the heart itself (of course, some with AF have other issues which require drugs or ablations).

Steve

[realdon in reply to Ppiman]

When I came off Amiodarone (which had worked well in dealing with AF and 4 years on I am still AF free) the cardio advised not suddenly stopping but a phased reduction - I can't now remember the exact details but definitely was not advised to just suddenly stop.

[Ppiman in reply to realdon]

I think that's good advice and that slow tapering is common for many heart drugs - beta blockers can, apparently, be dangerous if just stopped. I suppose it depends on the dose and how long the drugs have been taken for. I tend to trust doctors completely, myself.

Steve

[AblatedCyclist in reply to Ppiman]

I trust and like my doctors too, and my EP doc reluctantly put me Amiodarone and said tapering off of it gradually was always the plan. But with him overseas now, and some symptoms of the drug showing up (cough, shortness of breath, fatigue, etc) my primary cardiologist told me to just stop taking it. Hence the dilemma! EP had me cut the 200 mg pills in half 5-6 weeks ago and for the past two days I decided to cut the 100 mg in half to take it down to 50 mg.

[Visigoth in reply to realdon]

I find that very interesting as I am on amiodarone myself. Do you mean that you came off it and have remained free of AF, with no other intervention? How long were you on it?

[realdon in reply to Visigoth]

After 2 ablations that didn't work my AF got to a stage by August 2018 where I could not easily go upstairs because the AF was making me breathless. Also the episodes were becoming more and more frequent. Dr Clague (Brompton) decided to prescribe Amiodarone which initially I was very much against having read about possible side effects. Reluctantly I agreed. The dose was tapered upwards over the first couple of weeks and the episodes of AF ceased within a week or two. From December 2018 the dose was tapered down and by mid December I was off the Amiodarone. I have been AF free since then but still take Apixaban. I should mention that when first diagnosed with AF in 2012 I was given a pacemaker because when coming out of an episode of AF my heart sometimes stopped beating for between 3 and 10 seconds which had caused brief faints. I still have the pacemaker which provides evidence of AF episodes if any (NB this was NOT pace and ablate).

[AblatedCyclist in reply to realdon]

Great that you’ve been AF free for several years since you got off the Amiodarone. I’ve had an ICD for almost 2 years and I think that’s helped overall. The AF just popped up summer 2022 (very annoying after all the other stuff seemed under control) so hopefully this won’t be persistent. No AF since the ablation but I did have that flutter that they shocked me for.

[Visigoth in reply to realdon]

Thanks for explaining your situation. It seems to me very encouraging that you’ve been AF free since coming off the amiodarone. I’ve been on it for the best part of two years now and can’t help wondering what will happen if I come off it.

[AblatedCyclist in reply to Visigoth]

not sure if your question is for me or Realdon but I have only been on it about 10 weeks and am tapering off. I’ve had no AF since an ablation last September but I did have flutter at 135 bpm. That’s when he started the Amiodarone.

[Visigoth in reply to AblatedCyclist]

Thanks for your reply. I’m always interested in people’s experiences of amiodarone. I’ve been on it for the best part of two years and in comparison with other people it’s beginning to look like a long time!

[AblatedCyclist in reply to Visigoth]

no, sorry, I’ve been on amiodarone for about 4 months now but the plan was to wean me off in 6 months or less. I haven’t had any heart issues since I went on it but I’ve been noticing some side effects from the drug that I don’t really like

[AblatedCyclist in reply to realdon]

thanks- my EP said the same thing. I appreciate your response.

[Jajarunner]

I did see a research paper where 50 worked fine with (and I quote) "elderly patients". I don't know your age so please don't be insulted! Anyway, it's something you should discuss with the cardiologist. Good luck

[AblatedCyclist in reply to Jajarunner]

lol. Thank you and I will. I cut the 100 mg pills in half for now so I’m down to 50 mg while he’s away. I think he’ll be good with that as tapering has always been his plan. We’ll see. 😊. And I don’t feel elderly, but I’m afraid by any definition I would be considered elderly!

[Jajarunner in reply to AblatedCyclist]

Just seen your age, 70 is not old these days. I work at a gym and we've had customers in their 90s. Amazing. You're a mere whippersnapper!!

[AblatedCyclist in reply to Jajarunner]

Lol. Well I don’t feel 70! That’s old. I can’t believe I’m dang 70 already.

[Jajarunner]

pubmed.ncbi.nlm.nih.gov/125....

I think this is the study xx

[AblatedCyclist in reply to Jajarunner]

thank you!

[kocoach]

Hello cyclist; I was taken off of Tykosin (Dofetelide) when it lost it's efficacy and was put on Amiodarone and I developed hand shakes like you won't believe. Eating at restaurant hand shaking so much I couldn't eat my soup, kept flinging it all over the table, had to have dinner put in container ttake home. Told my primary care physician and he said it was ET's (essential tremors) but who knows. Been on amiodarone for about 5 years now and Dr. won't let me cut back or switch me to another medication. Tykosin kept me out of afib for almost 25 years running 7 miles a day (in sand) training boxers and sparring with them until age 54, am now 76. Holter monitor showed I was in afib 80% of the time now. I've come to the conclusion "it is what it is." Good Luck with your afib and have a Blessed Day.

[AblatedCyclist in reply to kocoach]

thanks kocoach. 5 years seems like a long time to be on amiodarone but it sounds like you tolerate it well. My doctor didn5 want to put me on it but said he didn’t expect me to be on it more than 4-6 months. It’s been a few months since I’ve had any heart issues- but I’ve arrived at your same conclusion- it is what it is!

[Tuna0510 in reply to kocoach]

So...dumb question here....If you are taking amiodarone for 5yrs and a Holter monitor indicates you are in AFIB 80% of the time......why are you still on amiodarone?

[kocoach in reply to Tuna0510]

The EP that is taking care of me doesn't want me off of it, asked him many times but advises not to probably because my heart rate goes up to 260 bpm. I really don't know but he's the Dr.

[PengieP]

I can only speak to my experience. I had been taking 200 mg/day since 2010 when I was cardioverted out of Afib which had caused heart failure. I've recovered from heart failure and have been in NSR since then. Last year my cardiologist dropped my Amiodarone dosage to 100 mg/day with the idea that I may eventually get off it completely. None the less, I appear to be one of the lucky ones that cab tolerate Amiodarone with almost no negative side effects- the major one is sun sensitivity but even that isn't all that bad either since use of sun screen seems to take care of that. I would do exactly what your cardiologist suggests. Those guys know what they are doing and I hope you can get rid of your flutter too.

[AblatedCyclist in reply to PengieP]

thanks very much. It sounds like you do tolerate the medicine very well and I’m glad to hear you’re doing well. Thanks for sharing your experience with it.