Amiodarone: This has been mentioned to... - Atrial Fibrillati...

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Amiodarone

Singingforever profile image
23 Replies

This has been mentioned to me by several members of cardiology team as being the only option now. Can't have ablation as recent right coronary artery stent.

When they offer it they immediately launch into a long list of potential adverse effects, and my google searches do not fill me with confidence.

Anyone on this or have any advice?

Thank you

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Singingforever profile image
Singingforever
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23 Replies
kitenski profile image
kitenski

I asked my local arrhythmia nurses about it and this is their reply. I guess you and your team need to weigh up the benefits to taking it vs the risks of the side affects.

Unfortunately amiodarone has quite some burden of potential side effects and potential toxicity to thyroid, liver and lung tissue. I'd be somewhat hesitant to suggest it.

There is a medicine called dronedarone that was manufactured with the intention of it being an alternative to amiodarone with less potential side effects however there's less success with it, there remains an association with liver toxicity and with poor overall outcomes if AF becomes persistent or if there is impairment to cardiac function.

Singingforever profile image
Singingforever in reply tokitenski

Thank you for your reply - it does not look great really. I will have to think hard about it.

mjames1 profile image
mjames1

Might make sense if they're using it as a bridge treatment until you're ready for ablation. Because if you have CAD, you may not be eligible for some of the other anti-rhythmic medication's. You should be OK if it's properly monitored.

Jim

NHS4ME profile image
NHS4ME

In other countries (e.g. US, Aus) amiodarone is only used for life threatening arrhythmias, e.g. ventricular tachycardia, not AF. In the US it's not supposed to be used for AF. In the UK the MHRA released a warning to medics about the toxic and irreversible side effects of amiodarone, e.g. fibrosis. They point out that lung problems can come on very quickly, but stopping the drug can't stop the effects as the damn drug has a half life of months. Despite this my cardiology clinic tried to prescribe this to me for mostly symptonless AF.The cardiac nurse defended the use of the drug in this way, and when I pointed out the official advice and research, said 'well, we(?) do our own research!' I have found that nursing staff seem to quote the opinions of particular consultants as established fact.

I now make sure that I am fully informed of all the issues from official sources before meeting consultants, and I ask questions. In my case I rejected amiodarone in favour of sotalol, which I have used before without any side effects and it works.

opal11uk profile image
opal11uk

Yes, it has a poor reputation, I was put on it briefly some years ago and asked for an alternative. Enquire as to whether Digoxin would suit you as an alternative.

BrotherThomas profile image
BrotherThomas

I took it for about 2 years without any problems. To be honest, it didn't really help with my AF so I stopped taking it over a year ago. No side effects though.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I thought it should be used with caution.

Only take for short periods or pill in the pocket.

The 2 excellent write ups from members on meds and AF and ablations mentioned Amiodarone with caution.

cherio JOY. 75. (NZ)

Jajarunner profile image
Jajarunner

I'm on it since February 2023. My side effects are a halo around bright lights and having to adjust my thyroxine dose for under active thyroid. Most side effects were in the 'olde days' high doses. Nowadays they use low dose ie 200 and lower. It's given me my life back, I can run, cycle etc which was being spoilt by constant cardioversions.I'm waiting for fourth ablation as I'm too young to stay on amiodarone long term (I'm 60). Otherwise I'd stay on it forever. Dreading coming off it.

Hope this helps x

Jajarunner profile image
Jajarunner

Ps the arrhythmia nurses told me it is an excellent drug with "bad side effects for some". In my case none of the others drugs worked but I'd try all the others first. It is a drug of last resort.

Ducky2003 profile image
Ducky2003

If you type Amiodarone into the search bar at the top of the page, it will show you previous posts about the drug.I've been taking it on and off for about 6 years and have vortex keratopathy, which is supposed to go away when Amiodarone is stopped, but its the only med that's had reasonable success in keeping me in nsr for any length of time.

I'm on the list for a valve repair surgery, with a Cox IV Maze thrown in so would hope to come off it after that.

Beta44 profile image
Beta44

I had a relative who took Amiodarone for many years with no problems at all apart from staying out of the sun as much as possible. He died of an unrelated matter at 89.

Ppiman profile image
Ppiman

It is a worry, but so far as I can tell, all AAD drugs are far more toxic than rate control ones such as beta-blockers. It surely depends on the symptoms you suffer during your arrhythmia episodes and the effect of these upper chamber atrial issues on the much more important lower pumping chambers, the ventricles. I gather this is why many people are only given rate reducing drugs such as beta-blockers (1.25mg daily bisoprolol in my case), and even blood pressure drugs (100mg daily losartan in my case), purely for their ventricle protecting effects.

I am thinking that in your internet search for amiodarone, you perhaps missed a search for "Low dose amiodarone safety"? That - a large and well carried out study - reached very favourable conclusions indeed for the safety of the drug, and will be most reassuring for you.

As I understand it, the reality of amiodarone as a heart drug is that it offers wide and useful benefits for the heart and has a unique cardiac safety profile. Unlike other AAD drugs, which often cannot be given when there has been any ischaemia or other cellular heart damage (as in your case), amiodarone is safe as it doesn't induce unsafe arrhythmias nor widen the QT segment and risk ventricular arrhythmias.

Unfortunately, in a few people it is toxic, and needs carful monitoring in all patients throughout its use. If you are given it, and I expect it will be a choice you have to make, that study ought to help you, but you do need to ensure both your surgery, your opticians and you are capable of detecting any important adverse effects all the time you are taking it.

Steve

NHS4ME profile image
NHS4ME in reply toPpiman

I am very suspicious of 'studies', especially if they originate in the US, where powerful lobby groups have beaten most regulators into submission and enabled most industries to 'self certify' their products, and self regulate their activities, often with disastrous consequences for the end user. This includes companies carrying out their own trials and failing to submit all their findings to the regulators.

Model52 profile image
Model52

My best friend, who is a retired cardiologist, prescribed it for his own mother who took it for many years and lived to be 93. Just make sure to have your thyroid and lungs checked on a regular basis. It is the most powerful and efficient anti-arrhythmic.

Ppiman profile image
Ppiman in reply toModel52

That is an excellent reply and hopefully will prove more helpful than my long and well-considered response, even though it was based on my years of working with clinical trialists in “Big Pharma” (!?).

I feel that the internet has fostered a change in some who use it to approach its information with a cynical rather than a sceptical mindset. Given our reliance on medical specialists, that can become self defeating and risks being self destructive when we refuse drugs on the basis that we know better than doctors. My brother is such a one. I am regularly regaled for my naivety.

Steve

jd2004 profile image
jd2004

I seem to be doing ok but never say never. Had to remind doc of need for blood checks which were done last week. Haven’t heard back about them. At first I was put on loading dose which was reduced by too much. I now take 2 x200 per day and I make sure I take them every 12 hours.

Ppiman profile image
Ppiman in reply tojd2004

I would ask my doctor to try to aim to find the absolute minimum dose that would make the condition comfortable enough, given the risks if taken long term.

Steve

Vonnegut profile image
Vonnegut

We know we are all different but Flecainide works very well at keeping my heart in order and I’m 80.

john-boy-92 profile image
john-boy-92

Apologies to forum members who have read my experience with dronedarone and amiodarone in the past.

Some people can take amiodarone and its sister drug dronedarone without ill-effect. Others will experience sun sensitivity, cataracts, or irreversible thyroid damage. Around 6 in 100,000 will have pulmonary toxicity with very poor outcomes. Thanks to Professor Anne Millar and the North Bristol Lung Institute I'm still here - albeit with scarred lungs - after pulmonary toxicity secondary to dronedarone (and amiodarone). My case was written as a paper and published on the Internet: dx.doi.org/10.4997/JRCPE.20... © 2015 Royal College of Physicians of Edinburgh. If you take either drug and develop a dry, non-productive cough and, a sound like Velcro being pulled apart (known as Velcro crackles), contact your GP and respiratory department. It may be wrongly diagnosed as community-acquired pneumonia; the key differentiator is that it does not respond to antibiotics, even front-line antibiotics. Additionally, the lung sounds are in a different position than with pneumonia. Left untreated, you become hypoxic, and oxygen via nasal cannula at 4l/minute will have no effect: I needed 25l/minute plus a hydrocortisone injection.

I felt that an ablation at 70 wasn't going to be effective. I spoke to a surgeon who carries out ablations and he said that he wouldn't have one.

Two years after pulmonary toxicity I had a stroke - an EP had previously discounted my AF and said that I didn't need an anticoagulant.

Ppiman profile image
Ppiman in reply tojohn-boy-92

Treating illness is often a balance of risks, it seems. Utopia is the place I’m always hoping to live but I always somehow get lost on the way. 😉

Steve

TiredHeart profile image
TiredHeart

I was on Flecanide for a year with excellent control; however, once diagnosed with amyloidosis I was taken off immediately. I was told my only other alternative was to take amiodarone, which I refused. Last month I spoke with the doctor who will do my ablation in October, Section Chief of Cardiac Arrhythmia at Brigham and Womens hopsital, and he told me dofetilide was an option. In order to take this drug, you must stay in the hospital for the first 5 doses to measure creatine and QT levels, after that, no problems 'should' occur. So, depending on which doctor you talk with, there may be other options.

TracyAdmin profile image
TracyAdminPartner

Hello

Thank you for your post, many individuals are concerned when they are prescribed a new medication, if you have any questions or concerns about taking the medication, please approached this direct with the GP or Consultant. You may find our Information Sheet 'Amiodarone' helpful in answering some of your questions:

api.heartrhythmalliance.org...

If you have any questions, or would like any further support, please contact our Patient Services Team: heartrhythmalliance.org/afa...

information sheet
kocoach profile image
kocoach

Hello, If you'll go to my profile and click on posts and scroll down three or so posts you will see three posts regarding Amiodarone and the journey I have been on taking this afib treatment for about 7 years now the ups and downs, the scares I've had but so far so good. Monitoring of several types are very important while taking this medication. Good Luck with your treatment. Have a Blessed Day.

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