Need advice on Amioderone

A friend was taking the drug, and developed essential tremors, almost like Parkinson’s disease. Her doctor took her off drug right away.
All drugs have side effects, finding one that makes you feel better takes time because a lot of error can happen.

Hi unhcatfan, I'm wondering what concerns you have with Amiodarone side affects. Yes there is long term effects but is a great medication and I was on it for about 10 years. Now in very high doses I myself at the end had issues with it but on the low dose it was very helpful in my case. Now when my heart was at its end and I was waiting for a Heart for transplant, to keep me going, they had me on a IV version which did cause a bad reaction.
Also my problem was VT not afib so maybe my dose level may have been different. Its been over 5 years now since my transplant so I don't remember the dose levels.

I've been on tikosyn for about 10 yrs with no,problems. Have not had afib with the exception of two bouts after getting the first two vaccine shots.(Moderna). I'm convinced those bouts were due to the vaccine and I will never get a booster. My cardio has never suggested an ablation and from reading here, ablation doesn't always work nor does it last forever. I'm 84 and happy with tikosyn.

I have been coping with a-fib for nearly 30 years. Tried all antiarrhythmics, all worked for a longer or shorter time (loved my Flecainide!). I have now been on amiodarone for about 5 years. I take a relatively low dose - 150 mg daily - and it does what it can to keep my a-fib episodes under control, but unfortunately I am still getting them frequently. I am now looking at a surgery called TT Maze to knock out the a-fib once and for all.
As for side effects, I have none. No headaches, and my liver, kidneys and lungs are all okay (they test yearly for any changes.) For now, it's the drug for me. Good luck.

hi Dana,
Thanks for the insight. I'm concerned due to the high loading dose they want me to be on (which I know is only for 10 days; 800 mgs a day in divided dose then 200 / day). The drug has a long 'half life' as you might know and that's a concern. I realize that I could do very well on the drug but could also even in the short term have issues that could be damaging to my thyroid/lungs/eye sight. Just not sure I have faith I'll be ok despite the re assurance from the doc that I'll only be on it for a short time (not sure how long) and that 'if anything happens we'll take you off'. So yeah, I'm fearful and now sure the 'reward' of having my ablation work for a period of time is worth the 'risk'.

Hey there jenrev I'm glad that you have had a good response and good luck with your TT maze (I'll have to look that one up). I feel like I could be making a mistake by not going with this protocol and still might change my mind. I understand the EP's rationale for wanting to use it...
Sounds like you have pretty frequent afib attacks? I just walk around pretty much in a daze since I have persistent afib that for the most part, is livable. (I did have 2 hospitalizations this winter 3 weeks apart with acute congestive heart failure, which my cardiologist says was not caused by afib...prob covid related as I had it in Dec for the second time).
Wishing you well!

Thanks for your reply and sorry you are having issues with this drug. Not to promote anything but there is a 'stop amiodarone' public facebook group were you can read alot about people who have used the drug. Most of the posters seem to also have loved ones who have had very bad side effects, death even, that were related to this drug.
While I agree that everyone is different, it's stories like yours that make me pause and think there 'has to be something better' to achieve the same effect...Take care, and best wishes going forward!

I have about one episode of a-fib every week that lasts a couple of hours usually. Because of the rate-dampening effects of the amiodarone, my heart rate rarely goes above 115. When I am not having a-fib I'm coping with lots of erratic beats/ectopics - mostly premature atrial complexes. I gather that PACs and A-fib are good friends who like to hang out together - not my friends (!) The TT Maze procedure is basically an ablation that takes place on the outside surface of your heart rather than inside the chambers. More invasive and also more effective. This will happen in the fall. Cheers and patience to all of us coping with these arrhythmias - it takes a lot of mental stamina!

Ok sounds about right as for a normal dose. I was able to find an old reference to what I was taking and actually I was on 2 separate anti arrhythmic drugs. You may want to ask about one less common but I found to be (I believe) better with less side affects. The 2 i was on amiodarone 200 MG 1 per day, and mexiletine 200 mg 3 times a day then towards the end a third one Sotalol 120 MG twice a day. But this was when things were really getting bad and it was 3 months later when I was looking at transplant.
Now in the beginning when I was only on the first 2 the amiodarone was at 400 Mg so your doses were actually on the low side at 200 mg. Im not sure when the length of the treatment affected my Thyroid but when I got to Mayo the Cardiologist noticed that my ears tips had a light shade of blue. This she said was from the Amio. I did not notice it as it was very light. it was also then that I was told my thyroid was beyond use and was removed. So your not wrong there is long term effects on that medication. But I look at it this way. It got me 10 more years before I needed a more drastic treatment like transplant. But your smart to consider all area's before making any decisions.

I also might add that when my original problem started my cardiologist tried 2 other medications first before Amiodarone. One was lisinopril but I got hives with that one. I don't remember the other one. So I was kind of at a place where Amiodarone was the last option. Maybe discuss your concerns and see if there are other options available in your case.

Hi Jenrev
You are SO right it does take a lot of mental stamina to cope with A-Fib.
It is so unpredictable and that to me is the worst part.
There is no rhyme or reason to it.
Being a very disciplined person ( boxing and do MMA) I always attack something with a strategy or game plan.
With A-Fib there is NO strategy that works.
The A-fib does what it does when it wants.
Like a little man living in my chest that has its own mind.
It is so frustrating.
And as you touched on, the mental part is the worst.
I find no one seems to understand.
Its really messed up my life.
Best of luck to you I hope everything works out well for you.