Stopping amiodarone - experiences?

[Cliff_G]

What are folks' experiences stopping amiodarone after a long time on it?

Having been on amiodarone for 5 years after OHS post-op AF in 2018 (and an AF history back to 1995, ablated in 2002) I have finally managed to get off it, now for over 3 months. I tried 4 times before and never got past 3 weeks before having to restart. I ascribe this success to getting my potassium levels up significantly - high normal vs. towards the lower limit. Maybe.

So far I'm not seeing any huge changes in my areas of concern, including fatigue, very weak legs, no training effect/improvement produced by exercise, shortness of breath. All my thyroid and other bloods have remained normal whilst on it, so nothing I can really get measured. I'm still getting about the same minor arrhythmias as on it, i.e. PACs, the odd PVC, lots of pauses, lots of bigeminy, trigeminy and up to say 10 beats then a miss, the odd short tachy run, the ventricular pauses may be that I have worsening (?) LBBB.

I know it takes months and more to get out of your tissues, but there's also the issue of recovering from any damage done, which will take even longer.

I'd be interested in anyone's experiences on this. Thanks in advance.

[CDreamer]

I will follow you post with interest as my husband is now on year 6, sorry I have no experience to offer but a question, what dose were you on?

[Cliff_G in reply to CDreamer]

Hi, 200 mg/day

[Ppiman]

I have LBBB and can find very little to suggest it should be at all symptomatic and yet my GP generally attributes my many ectopic beats and “this and that” to it. I just find that it’s truly hard to know just what is “going on” unless you have what everyone knows about, i.e. AF.

Steve

[Cliff_G in reply to Ppiman]

Thanks, wondered if it was part of the pauses, maybe not then.

[Ppiman in reply to Cliff_G]

I suppose in a way, it might be. I wish I knew. I suspect that LBBB is evidence of some conduction failures in parts of the heart muscle, and pauses and ectopic beats are also evidence of the same. How important overall these things are - where they will lead, I don't know and I suspect doctors don't either. I read the other day that heart Paiute, for example, remains an "unknown" in medical terms, with doctors still having no real idea why some people get it and others don't.

Steve

[Cliff_G in reply to Ppiman]

Not heard of heart Paiute, is that a typo 😮 ?

[Ppiman in reply to Cliff_G]

Indeed it was. Quite how the word “failure“ becomes “Paiute” is one of those marvels of modern technology that, one day soon, I feel sure, will be given the respect it must surely deserve.

And how I managed not to notice such a crazy typo is a sign of something else!

Steve

[DKBX]

Was on Amiodarone for about two years until my first ablation. Went off cold turkey and was fine for about five years until needed more ablations and cardioversions and different rate and rhythm control drugs. Now on sotalol and hoping.

[Cliff_G in reply to DKBX]

Did you notice any negative side effects whilst on it and how did they change once off it, or was the ablation soon after stopping?

[DKBX in reply to Cliff_G]

Went off immediately after the first ablation. The only side effect was slightly greenish tint to facial skin which faded after about 6 weeks.

[Amiodaroneluck]

I have been on 200 mg amiodarone from 2010 to 2020. Besides increased sun sensitivity and the corneal deposits I've not had any side effects worth noting, thankfully. The last 3 years or so, my dose has been reduced to 100 mg/day. I guess I am one of the lucky people who can tolerate this med without problems so far. Knock on wood. I've read that serious side effects are uncommon at 200 mg/day or less for most people. But if I didn't need it, I'd not want to be taking it. The added tests and xrays are a bit of a hassle. But, I've been in NSR for 13 years and hope to remain so.

[Cliff_G in reply to Amiodaroneluck]

Thanks.

[BlueMonday67]

Hi Cliff G. I was on amiodarone for a year and had to stop suddenly as I had developed ground glass nodules in my lungs caused probably by the amiodarone. I was surprised to be told to stop suddenly but didn't seem to have any problems with doing so.. Went onto have an ablation a month after which solved most of my arrhythmia. And my lungs did recover after 4 months. The amiodarone did also affect my eyes and my thyroid but I wasn't aware of that. Thyroid back to normal after about 6 months and eyes only knew about as optician told me.

[Cliff_G in reply to BlueMonday67]

Thanks. I eventually decided myself to stop, two consultants (cardio & neuro) had already suggested this but I hadn't been able to as the AF came back. But once I realised I was overdoing the steroid inhaler this was a "stop now and tell your doctor" instance. The GP immediately did a chest xray which was clear, waiting for referral to lung consultant, but the last few weeks have been better, so maybe not needed. My thyroid numbers were ok all along, I'm not a sun person and never had a problem there, and the eye deposits have been there but not bothersome.

Glad to hear that the ablation has helped. I had one in 2002 and got 15 good years before an aortic dissection and the required surgery messed my heart up.

[BlueMonday67 in reply to Cliff_G]

I hope all goes well in the future. Seems like your GP is on the ball. When I told mine I had a wheeze and a cough he said it was probably down to acid reflux! It was my cardiologist who sent me off for a CD scan. Thank goodness he did

[Cliff_G in reply to BlueMonday67]

They must see a lot of reflux cases, I've lost count of the number of times I've heard that.

[Dippy22 in reply to Cliff_G]

Yep, I know of two stomach cancers misdiagnosed as “acid reflux”. They didn’t make it sadly. 😟

[Cliff_G in reply to Dippy22]

It (gastritis, anyway) is a standard misdiagnosis for aortic dissection, usually type B has the pain that low down. ThinkAorta! CT scan for a definitive answer.

[Dippy22 in reply to Cliff_G]

Oh yes, and then there was the one the GP was treating for kidney infection! Whilst his wife was at the pharmacy getting the prescription for antibiotics (before the urine test was done) the poor man collapsed dead on the stairs from a burst aortic aneurysm.

Have to say that particular GP was taken to court on several occasions. He only finally got struck off and locked away when he was done for sexually molesting special needs children.