stopping Amiodrone

[Danny44]

Hi There,

I’m looking to come if amiodrone after 8yrs as I have severe fibrosis. After a recent CT scan.Seeing lung dr soon also.im now waiting too see cardio dr but all he has offered in the past was an ablation.which I refused as I don’t want a 50/50 chance of it working or end up having multiples.ive had 3 spinal surgery’s so I really don’t want an ablation.I am only 53 so not sure why I was put on a last resort drug and at such a young age.i was put on amiodrone after 2nd cardioversion.I know how toxic amiodrone is now but I had no idea for about 5 yrs until I found out on this site.Im scared to come off ideally I would like to swap for another alternative with no horrible toxic side effects.I also had copd at the time of being put on amiodrone so why would a cardiologist give me a lung toxicmed when I already have a lung issue.Anyway I need to stop it somehow without ablation.has anyone else any experience of this situation as I feel like I’ve been handed the death card atm and I know it affects thyroid,eye sight,Liver,pancreas etc etc.Very worried TIA.

Dan

[Visigoth]

I’ve been on amiodarone for three years and have been lucky so far, thank goodness. I don’t think you need be too scared about coming off it because it stays in your body for a heck of a long time, so even if you stop taking it immediately it will be like a gradual withdrawal. I can’t imagine that the cardiologist will want you to stay on it now, but before you see him/her you could consult your GP about coming off it. What dosage are you taking?

[Danny44 in reply to Visigoth]

Thanks for your reply Visigoth.it stats in your system for about 2 months I did try and stop a while ago and after 1.5-2 months felt like rubbish with big AF attacks.yes will speak to my GP also I take 200mg once a day.such a horrible drug I just want to come of it now 🤙

[Danny44 in reply to Visigoth]

I’m sorry I missed your reply I’m taking 200 mg which I stopped last week Cardio dr.Said he will put me on a low dose of flecanide after the 3 month withdrawal.hope your well.i just hope I don’t have massive AF attacks after it’s out of my system

[Visigoth in reply to Danny44]

I do hope all goes well for you

[Sheepbreeder]

An effective alternative to Amiodarone but without the toxicity is Dronedarone.

[Danny44 in reply to Sheepbreeder]

Thanks sheep breeder my dad is on dronedarone he has been told to stop by NICE as it still very toxic and causes fibrosis and gives you heart failure 😡

[BrotherThomas]

As Visigoth says, it does have a long half-life in the body so coming off it is usually problem free. Nevertheless, after taking it for a couple of years, my cardiologist told me to take half a dose for a couple of weeks before stopping. I actually took a half dose for a month then a quarter dose for another month before stopping. I had no problems during this time.

The reason for stopping is that it simply wasn't working for me.

[Danny44 in reply to BrotherThomas]

Thanks BT much appreciated I think I will give that a go 😄

[Tomred]

Dronederone, if i recall right is the same as amioderone minus iodine, maybe you could enquire about it .

[Danny44 in reply to Tomred]

I only just saw your reply yes I will def ask if that’s a possibility many thanks.

[Ppiman]

Please do search for and read a recent study on the internet entitled " Low dose Amiodarone Safety". It offers a well balanced view of the drug in modern usage.

Amiodarone can certainly be toxic, but so can all anti-arrhythmic drugs, which is why beta blockers are the first choice. Some of the stories I have read here about it paint a bleak picture and yet the treatment of troublesome and sometimes frightening arrhythmias isn't easy (as I am finding).

Steve

[Danny44 in reply to Ppiman]

Thanks Steve I will look that up now 🤙

[Bolander]

After a bad experience with Amiodarone I was put on Sotalol and it has kept me in NSR for several years.

[Danny44 in reply to Bolander]

Yes I’m hoping to change to solatol 😄

[kocoach]

Hi Danny, I've been on amiodarone for 4 years now and other than a lung fibrosis scare I had a few months ago due to an x ray at ER showing minimal lung fibrosis, I got with my EP and said I wanted to stop taking it and I wanted a c/t scan as well. I asked what would happen if I stopped taking amiodarone and he said I would be in permanent afib. I decided to cut dosage in half to 100 mg until my c/t scan in a couple of weeks. Almost immediately after taking a half dose I went into permanent afib like he said and I stayed in it until I had my c/t scan which showed no fibrosis whatsoever (Thank GOD) and immediately began my usual full dose of 200 mg and within a week I went back into NSR. Have you asked for a c/t scan as it gives far more detail than an x ray? Fibrosis is one of the listed side effects of amiodarone, important thing with taking it is to be tested regularly for any negative side effects. I saw my EP about a month ago and he told me he'd see me in a year. Hope this helps you in some way and praying you will be OK, just don't give up as I am 78 years old and have afib for close to 35 years. Have a Blessed Day.

[Danny44 in reply to kocoach]

Hi there thanks so much for your reply yes that’s my worry I don’t want to be in permanent AF not sure whether it can be replaced with Solatil ir anotherAF drug.yes I have had a ct scan and it showed severe fibrosis out of the blue so I’m pretty concerned seeing cardio dr soon and king dr yippee not.

[sillguy]

Wherever things may end up regarding an ablation, it's not a very difficult experience at all (this is a separate topic from how long it may last). If you've had 3 spinal surgeries, an ablation would be a walk in the park. (I've had four over time, as the techniques improved.) Good luck!

[Danny44 in reply to sillguy]

Ok well thank you for your reply.its good to know that’s it’s not to evasive.but i just dont want anymore surgery’s and the fact that you have had 4 over time proves they either don’t work or dont last.anyway thanks for your reply it all helps 🤙