Amiodarone and AF

[Midnight2022]

I had cardioversion in August at Bart’s to restore sinus rhythm after being in persistent AF for 6 months. Been on amiodarone and pleased to report not a single flutter since. Had transformed my life. Cardiologist wants to reduce my dose and later change me to another drug. Does anyone have experience of this. I’m nervous about what effect will be as amiodarone been working so well.

[Hidden]

I have no personal experience of taking Amiodarone but as I understand it, it is one of the most effective arrhythmia medications available but requires to be taken with a degree of caution because the side effects associated with it. Generally, what you have experienced is a key part of a treatment plan to assess whether or not you can return to normal sinus rhythm and if so, whether you feel better for it and from what you have said, it sounds as though it has been a resounding success. Barts has a great reputation and you are in good hands and they will probably want to get you off Amiodarone as soon as possible as it could permanently affect your thyroid and that’s not good, especially as it can cause AF problems. I suggest you follow their advice and if they offer an ablation which is likely to be the next part of the treatment plan, give it serious consideration because it could lead to a longer term way of controlling symptoms…….

[Midnight2022 in reply to Hidden]

Thanks for your encouragement. I will reduce the dose and switch to different drug after a couple of months. I have been offered an ablation and am now on waiting list of seven months so hopefully that will sort things.

[Rainfern]

Given the potential long-term side effects of amiodorone it seems very sensible to come off it, but understand your nervousness to do so. I came off digoxin the same day as my ablation which seemed a bit sudden as I’d grown quite attached to the benefits, but back in NSR I don’t need anything apart from Apixaban.

[jeanjeannie50]

Amiodarone didn't keep me in normal sinus rhythm and damaged my thyroid. I now have to take tablets to rectify that for the rest of my life. I detest that drug. My advice is get off of it as soon as you can.

Jean

[BobD Volunteer]

As a famous doctor told us at HRC one year. Amiodarone does not have side effects. It has effects!

The damage it can cause to so many organs if taken long term are legion and it has long been considered the drug of last resort. Many people are still living with the effects of taking this drug so your consultant is right to want to change your medication. You have been very lucky so far. Don't push it.

[Stato308]

I understand your concern so well. Had an ablation (pulmonary vein isolation) in May 2023 to restore NSR. Was put on Amiodarone in April 2023 as support during the process and to allow for the 3 month blanking period. Amiodarone 200mg once daily was ceased in August of this year. So far all good. Some return of ectopy but very manageable. Importantly, no AFhas been recorded on my loop recorder at all. You don't want to be on Amiodarone for longer than necessary. My EP said to me, "you should be most worried about staying on Amiodarone for longer than absolutely necessary". This drug remains in your system for up to 12 months in some cases. Trust in the process, the advice received and push through the anxiety. You've got this!

[Gliding]

I was kept on Amiodarone for 15 months after cardio version and ablation. My consultant said that long term Amiodarone could cause liver damage, but didn't mention any. other side effects. 3 months after coming off the drug, I started losing weight, and my performance at the gym deteriorated. At 76yrs I put this down to ageing. However this process asselerated and after 4 months I took a blood test and was diagnosed with hyperthyroidism (overactive thyroid). A fairly common side effect that I had not been warned about. The AF also returned. 2 months later my bloods are back to normal, but my muscles are still affe cted. It is the larger muscles that are most weakened, with my left quad down by 75 %. It should recover eventually.

My advice would be to come off the Amiodarone asap.

[oscarfox49]

Although amiodarone can be very effective for many people (it worked on heart rhythm for me but the other side effects were truly horrible, including a couple of things which led to me calling emergency help at 4 a.m.!), there are a whole litany of unpleasant long term and short term side effects. One of the other things was turning a bright red every time I was exposed to even mild sunshine for more than a few minutes, not something an outdoor person can tolerate.

Doctors prefer not to leave patients on amiodarone indefinitely however as the side effects can be life changing and very serious and it requires regular checks on other body functions to monitor any harm at an early stage. So it would be preferable for you to transition to another less harmful drug if it can have the same beneficial impact.

As you are in sinus rhythm now and your AF was persistent rather than permanent, it is quite likely one of the newer beta blockers like nebivolol or bisopropolol might keep you that way. As reactions to all of these drugs are so variable, or so it seems from reading what people say here, you can only try what your doctor recommends and monitor it carefully. But as with many drugs, many take time to build up in the system and start to work as they should and for initial side effects to subside.

If you have read the literature on Amiodarone I think you will agree it makes sense in the longer term to change.

[Fullofheart]

Amiodarone caused underactive thyroid for me in just a couple of months. Took it for the same reason as you.Cardioversion, without Amiodarone only brought forth nsr for 24 hours but that was enough to evidence the possibility. 3 ablations later and I'm in NSR for the first time in 19 years! Took a lot of effort but we go there.

6 months of nsr after a cardioversion is pretty darn good!! Not that I'm a cardiologist but i suspect your cardiologist is right, time to come off that now and go from there. It all bodes well!

[Amiodaroneluck in reply to Fullofheart]

I already had a history of hypothyroidism. So after I started on amiodarone, the docs just increased the dose of levothyroxine I was taking.

[DevonHubby1]

Wife has had 2 failed CVs and one possible next step was to put her on Amiodarone before attempting a CV again. They (hospital) listed numerous possible reversible side effects such as organ damage and some non-reversible such as fibrosis of the lungs. It was made clear this drug was to be taken for as short a time as possible...so I think the advice to come off it is good.

[Ppiman]

Marvellous news and against what I have read a few times here concerning the chances of reversing long-term AF. I haven't had experience of amiodarone, although I came very close to it (for me a mix of bisoprolol and digoxin worked). You might enjoy reading this:

ncbi.nlm.nih.gov/pmc/articl...

Steve

[frazeej in reply to Ppiman]

Thanks Steve for reposting that journal article. I read it previously when you posted, but of course lost the link! Very useful information, and gives rational insight into a valuable drug when used with proper respect.

JimF

[Ppiman in reply to frazeej]

And you put it perfectly. Thank you.

Steve

[waveylines]

I was put on Amiodarone following a mini maze op. It had to be stopped after a month due to its side effects. I am still recovering from them but the op was successful as I remain in NSR. I think you have been very lucky so far. I definately would not stay on it. Infact I would refuse to ever take it again.

By the way Amiodarone has a very long half life of up to 6 months and lingers far far longer in the body after that. Seems to be your doctors are on the ball wanting to change your meds and forming another plan of action.

Wishing you well...

.

[Soundmike]

Yes like Jean and many others amioderone knocked me for six with my thyroid levels . This is only my personal advice but I would put your consultant on your Christmas card list and take his advice .

[andyk0001]

Hi, my wife also found that Amiodorone worked well after a cardioversion. After 5 months on a reducing dosage she was advised by her cardiologist to stop taking it to see what would happen . At about the same time she stopped drinking coffee with caffeine and cut out alcohol(which she hardly ever drank anyway).The result is that she has had two episodes of AF over the last year which she instantly cured by taking Amiodorone for a couple of weeks. Her cardiologist does not really support this approach wanting her to have an ablation. We wait to see if AF returns but so far so good as last AF was 5 months ago after a carb heavy Italian meal(may be coincidental).

[Visigoth]

I’m on amiodarone - been on it for 2.5 years - and I too would be nervous of coming off something that is working so well for me. My dose was reduced from 200mg to 100mg after the first 12 months and I believe that serious effects are much less likely on the lowest dose. (Someone posted an article about that on here.) Obviously I’m aware that some people have suffered the most terrible effects and that’s awful, but I have regular blood tests to check my thyroid, liver function etc so I feel it would be picked up quickly if I started to suffer from any of those effects. There are people who have been on it successfully for years and years and at the moment I’m hoping and praying I can be one of them! So I’m just saying it’s an option to continue on the lowest dose with regular blood tests.

[55zuzanka61 in reply to Visigoth]

You are right,amiodarone is an excellent drug and helped many people stay in sinus.Yes,the side effects can be prominent but retrospective review of many studies showed the incidence of side effects to be only about 2.6%.Even Aspirin may have more potential side effects than that,and do not forget that it means at least 97 patients out of 100 are doing just fine on this medication. I just believe that they might not be writing any posts since they have no need to do so.

[Prettyorchid]

Very happy for your success with Amiodarone…for many it works well…I wasn’t one of those folks! In 5 weeks it tripled my thyroid panel and lowered my HR to 38, requiring an ER admission. I would closely monitor your thyroid level and other suggested side effects. But hoping you are 1 of the lucky ones, as it is among the last Rx’s to be prescribed !

[Amiodaroneluck]

I have been on amiodarone since 2010. I am one of the lucky people who have had minimal side effects, limited so far to sun sensitivity and corneal deposits. Strangely, the corneal deposits are for me an advantage. They are regarded as harmless, but because of the peculiarities of Medicare in the US, having those deposits makes me eligible for eye exams that would otherwise not be covered by Medicare. The sun sensitivity I deal with with mineral sunscreen and a hat. My dose has been reduced a few years agoto 100 mg a day from the initial 200 mg/day. If you can tolerate it, it's a great med. You just have to be monitored for serious side effects.

[Visigoth in reply to Amiodaroneluck]

That’s really good to know. Like you, I have the sun sensitivity and corneal deposits but as long as I’m careful to use sunscreen and a hat I’m fine! Hoping that I can carry on like this because amiodarone gave me back my quality of life!

[Midnight2022 in reply to Amiodaroneluck]

Thank you to everyone who replied to my post. Currently I’ve decided to stay on amiodarone at reduced dose of 100mg daily and monthly blood tests. My quality of life has improved so dramatically that I’m reluctant to give up what I see as a lifeline. I’m 79 so doubt if I’ll be around for years anyway!!!

[Cabinessence]

Exactly the same as you. Ablation done at Barts in July and was put on Amiodarone a month beforehand to get me into rhythm. Had tried Bisoprolol and sotalol, but Amio was the only one that worked. Just taken off it 16 days ago, as long term it can do damage. Especially fibrosis of the lungs which is usually terminal. I'm now waiting with bated breath to see if the ablation has worked, or it's the amio that's been keeping me in rhythm for the past 5 months. So know exactly how you feel. Been told by my AP that I should know in a month, although my pharmacist said that Amio's long half life means it can stay in your system for up to 51 days.

[riffjack846]

I've been on amiodarone 100mgs a day for over 2 years after an ablation that didn't quite take. Been in NSR with no side effects except maybe some hair loss. I've read all the horror stories but I have also read that amiodarone in lower doses 100mgs is now considered safe unless you have an aversion to the drug..ie: the horror stories. Good luck.