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Amiodorone.

Jbeans profile image
29 Replies

I am looking for some advice on taking Amiodorone. I had a cardioversion a year ago that worked well for 6 months. Since then I have been in AF. No tachycardia, just an irregular heartbeat. It makes me feel unwell and short of breath. My cardiologist has suggested trying the cardioversion again but to also take Amiodorone to improve the chances of staying in NSR. Having read how toxic it is, especially to lung tissue I am concerned about starting to take it as I have just been really ill for 3 months with pneumonia.

Does anyone here have experience of this drug, both good and bad. The alternative might be an ablation.

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Jbeans
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29 Replies
Camille777 profile image
Camille777

I've never taken that drug but this is my brush with it. I had cardioversion that lasted for 4 days. After that, my doctor suggested another cardioversion after taking Amiodarone. My friends were on the phone with me before I got home and said, do not take that drug. After I got home and looked it up, I called my doctor's office and said, never mind. Don't send that drug to my pharmacy. I haven't seen him since because of Omicron. But I'm going to be looking for a new doctor. I wonder how many people it actually helps with AF vs the negative side effects.

Desanthony profile image
Desanthony

Taken short term, before and after 2nd cardioversion is the usual route here on the UK it is not usually taken long term but there are some on this forum who have taken his drug for years and are fine on it. I took it short term before and after my second cardioversion and had no problems with it. Had blood tests while on it to watch it and just as I was due to come off it my thyroid level was slightly raised. No other side effects and within 3 months of coming off it my thyroid level was back to normal.

I’m not medically trained and I have no personal experience of taking amiodarone. My understanding is that it is the most effective rhythm drug available but it can have a variety of quite serious side effects, not least on the thyroid function. Some say it’s the drug of last resort which may sound quite alarmist but personally if an ablation was offered, that’s the route I would take but others may have a different view…….

BobD profile image
BobDVolunteer

Under ESC protocol yes this is the drug of last resort but quite commonly used very short term to assist cardioversion. It must be clearly understood that if cardioversion consistently fails to return NSR then ablation may not be offered as the chances of success are so limited so it may well be worth trying.

Jonathan_C profile image
Jonathan_C

I will share what I know from my experience - to help you think through this, this is not advice.

I first went into afib in 2015 - my cardiologist (then) immediately put me on amiodarone for 6 weeks and then gave me a cardioversion. I stopped taking the amiodarone after the cardioversion and stayed in NSR for long enough to call it a success.

Since that cardioversion I have had a few more cardioversions and two ablations - one of the cardioversions has been since the 2nd ablation - my EP shocked me 3 times and I stayed in afib. So he suggested that I take amiodarone for 3 months - which was sufficient time to "marinade" my heart in it - after which we would try another cardioversion. He also gave me a holter which I wore for 72 hours - the holter showed that I was in afib the whole time.

So based on a combination of: (a) his repeated comments about the toxicity of amiodarone (b) the likelihood (very low) the cardioversion would work given the data from the holter (c) that I would probably need to take a lower dose of amiodarone daily to stay in NSR if the cardioversion worked. -----> I decided to stop all treatment and live with afib - he was very supportive of my decision.

He said there is no right answer, but felt my decision was sensible.

Jbeans profile image
Jbeans in reply to Jonathan_C

I am thinking of this option too. Cardiologist said I would be on it long term. I was offered zblation but it comes with its own risks and sounds scary. I am very SOB when in AF. Felt great after cardioversion for the 6 months it lasted. Its hard to know what route to take. I am on Bisoprolol and Rivaroxaban so staying in AF should just mean grot symptoms.

Becksagogo profile image
Becksagogo

Unfortunately Amioderone does what it says on the tin and is very effective but the side effects can be damaging. I speak from experience as it affected my thyroid, kidneys and liver in the 4 months that I was prescribed it. However it doesn't affect everyone the same way and some people are on it for years with absolutely no side effects at all. I wasn't warned about the toxicity of this drug and at the beginning of my AFib journey, I trusted my Consultant. I now research medication thoroughly to weigh up the pros and cons!Hindsight is a wonderful tool and I have to say I wouldn't take it if I had known what it would do to me.

I ended up having major heart surgery and I have had a pacemaker fitted as I had other issues and AFib no longer troubles me. This wasn't as a result of the Amioderone.

Good luck to you whichever option you choose.

Camille777 profile image
Camille777 in reply to Becksagogo

That's the issue, though, isn't it? When a drug has such drastic side effects, one doesn't know how it will affect them. My doctor just throws drugs out to me like they're candy. But I have heard from him before and read that Amiodarone can work for some people. However, I'm not at that place to deal with the possible side effects. I can't deal with the horrible side effects of Metoprolol, so I think the stress of knowing about the side effects would keep me in AF.

Rubymurray25 profile image
Rubymurray25

About 12 months after my second ablation I had a prolonged AF episode( 2020 during lockdown ) and was taken to hospital, they tried all the usual drugs during my 24 hour stay but nothing worked until an infusion of Amiodarone . I was put on Amiodarone tablets until I could have a third ablation, after 7 months my optician spotted crystal type droplets in my eyes so I was taken off the drug straightaway, it is a known side effect. 10 days later there was a cancellation do was offered my 3rd ablation. I was being prepared for the procedure when the consultant indicated the 7 months of Amiodarone had stabilised things and he didn't wish to risk upsetting my heart so I was sent home. I was then put on Dronedarone a far less toxic drug and 12 months on and 5 blood test later all is OK! I am due a review soon, I hate being in AF with my heart rate up in the 190's so will probably stay on the drug if that is offered. Good luck with whatever decision you make.

Sheepbreeder profile image
Sheepbreeder

It varies between individuals but it may take 6 - 8 weeks for Amiodarone to become effective in controlling AF. It was 8 weeks in my case. 18 months later I have the beginnings of calcium deposits in my eyes so 6 weeks to get the Amiodarone out of my system before starting with Dronedarone. 4 months on I am still AF free and getting on with business as usual.

raymelb profile image
raymelb

I'll add my usual supportive comment about Amiodarone. I've taken it on and off over the last 4 years and whenever I've tapered off usage and stopped using it totally, I go back into afib after a few weeks. I seem to be at a good and balanced point now and I only take 200mg three times a week. I've been regularly tested throughout and no problems found.

Steve112 profile image
Steve112

It would be interesting to know what your current quality of life is.. This medication affects all in very different ways clearly from the replies.

If you have a very poor QOL then the decision is probably made for you.

Jajarunner profile image
Jajarunner

I took it for six months prior and post ablation. No problems. It can have horrid side effects but according to the arrythmia nurses at Papworth AND the cardiac nurse at Addenbrooke's Hospitals many people take it for years without problems.Hope this helps you x

Maggimunro profile image
Maggimunro

Hi Jbeans

My brother was put put onto amiodarone prior to his ablation, which because of lockdown was held up for a year. The consultant kept him on the drug throughout this delay and even after his ablation. He ended up in critical care for 3 weeks, after the Amiodarone had knocked out his thyroid function and caused severe damage to his lungs. They kept misdiagnosing him with ‘chest infections’.

Six months on and his thyroid function is more or less stable but his lungs are permanently damaged. He now faces a life time of steroid use. He was a fit healthy man of the mountains, walking regularly in the Pyrenees, thinking nothing of doing 20k.

His ablation was a success by the way but that is of little use to him now.

Flossie72 profile image
Flossie72

I took amiodarone for nine months., 6 prior to an ablation and 3 months after. It was the only drug that stopped me going into extremely symptomatic AFib, and as such I am very grateful. I was warned beforehand that it would make me very sensitive to sunlight so I was able to take the appropriate protection, but I was still surprised at how sensitive my skin became. I had no other side effects at all, and this drug gave me back a reasonable quality of life. Having read about the toxicity of the drug I was keen to come off it as soon as possible after my ablation, but was persuaded to keep taking it for three months to help my heart settle into it's new rhythm. That was three years ago.

Sue

Nannysue1 profile image
Nannysue1

I took amioderone for 7yrs and under the advice of the head cardiologist st Guys hospital. Yes I knew about the toxicity of the drug but was monitored carefully with blood tests every 3 months, yearly echo ( mainly to monitor my HCM) and 2 yearly chest xray. This worked really well for me and yes I didnt like knowing that it was so toxic but it kept my AF at bay with only 2 episodes in that time. The only bad side effect for me was the sensitivity to sunlight, I really had to protect myself or fry!

Unfortunately it stopped working for me a little over a year ago and after 2 cardioversions over the 7 years which only each lasted around a month, I was offered an ablation. Due to my HCM it only had a 30- 40% chance of working. After much consideration and going up and down and driving myself mad ,deciding whether to go ahead with the ablation, and discussions with my EP, I decided not to.

I'm now in permanent AF but managed with Diltiazem and of course take apixaban.

My 2 yearly eye check with the optician last year showed some amioderone deposit in the retina. I was given an appointment to see a specialist at the hospital and he wasnt best pleased that the optician had referred me and intimated that she'd wasted mine and his time. Yes I did have some amioderone deposit but that it doesn't effect eye sight. ? He said that he wished opticians would phone to discuss it first? Dont shoot the messenger, I'm only reporting what I was told.

Anyway, I've been off of it for 6 weeks now and am pleased to have stopped taking something that doesnt work anymore. I doubt its completely out of my system yet, I believe it can take as long as 6mths. I'm finding that being in controlled AF, that I'm able to lead a fairly normal life. Going forward if things change my final option is an AV node ablation.

Like others have said on here, it has different effects on different people but for me it gave me quality of life for a long time.

Hope that helps.

Sue

etheral profile image
etheral

Given that you have pulmonary problems to begin with, I would get Pulmonary Function Studies done before starting amioderone. Then you would have a baseline to compare if you experience any pulmonary toxicity .. This is in addition to thyroid and other studies.

Best, etheral

Jes59 profile image
Jes59

I was on Amiodarone for a year, though dosage was gradually reduced during that time. For me it was a revelation as my AF episodes vanished with just the odd ectopic Episode. I was also clear for a year or two after but alas the AF has now returned and I am awaiting an ablation. As others have said if you do take it make sure you have regular check ups so at the first sign of adverse reactions you can stop it.

PengieP profile image
PengieP

I am extremely fortunate in that after cardioversion in 2010 and 200 mg Amiodarone per day I have been in NSR with only increased sun sensitivity, some easily controlled thyroid issues, and low heart rate as a side effect. Apparently I am one of the lucky ones who can tolerate the stuff with few problems. If your doc regularly checks your lungs and your thyroid, you should be ok.

Rebma profile image
Rebma

I took this drug after a failed ablation in 2018. My doctor prescribed a very high dose with a lowering schedule every week. It was horrible and I had issues with my eyes and hair loss. I stopped it switch doctors and have two ablations since the first failed one and am now doing fine. I see an eye specialist every six months and thankfully my eyes are getting better and my hair is back to normal. Hopefully, you will get everything straightened out. Best of luck to you. I live in the USA.

TracyAdmin profile image
TracyAdminPartner

Thank you for your post, have you visited the Patient Resources on the A F Association website? You may find the 'Amiodarone' patient information factsheet helpful? heartrhythmalliance.org/afa...

mlp3434 profile image
mlp3434

The longer I was on that drug, the worse my afib got. This drug can cause arrhythmia.

BrotherThomas profile image
BrotherThomas

I've been taking it for about 9 months now and had a successful cardioversion last October. I'm waiting for the results of a 24 hr ECG monitoring, carried out 3 weeks ago and, if OK, I should be stopping it soon. I've had no problems with it, thyroid and everything else is fine.

I think that it's like every other drug, some people are OK with it and some aren't but you'll only find out if you try it.

Fullofheart profile image
Fullofheart

Took for coupla months after 1 cardioversion on dronedarone that only lasted 3 days. Put on amiodarone to try another cardioversion but caused thyroid issues. Now back on dronedarone and waiting on ablation.It's very effective but very problematic is my summary. My cardiologist thought it was worth a go short term and I may have been predisposed to thyroid issues but that was the outcome.

colourblue profile image
colourblue

Hello, I took Amiodarone for 6 months, on having a blood test it did show kidney function borderline. I told my Consultant that I wished to stop the tablet, he agreed that I try without it. Still get episodes of AF but feel happier that I no longer take it. My Optician was surprised that it was still prescribed. Of course we need to listen to the professionals, but also listen to our gut feeling. My best wishes to you.

TanyaSo profile image
TanyaSo

I used Amiodarone 200 mg daily for 10 years. All that time my heart didn't have any arrhythmia. But my thyroid gland stop working well, and I had strong fatigue all time. I stop Amiodarone and my thyroid gland is OK now.Tanya

gemma29806 profile image
gemma29806

I’ve been on Amiodarone for more than a year. I asked to get off it for the side effects. Told doctor bad cough that’s as far as I got. Sent for a chest X-ray which was ok. Had to go to eye clinic turns out I’ve got problems with my corneas and macular degeneration. Also can’t walk very well which is another side affect. I’ve got copd, graves discease yu would think they would check my records.

Safc1983 profile image
Safc1983

I’ve taken it for two spells and have found it controls rhythm well I’m my heart. As soon as I weaned myself off it three months after ablation I fell straight back into afib. I’m now taking it ahead of a second ablation. I’ll not know about the long term effects for a while, obviously, but it does affect my eyesight for reading

Elfiejean profile image
Elfiejean

I have been on Amiodarone for a while. It was 200mg at first. They dropped it to 100mg because of side effects. I still have some but not as bad. It's all a personal decision to be sure. I do not want an ablation. After eight stents and a pacemaker procedure I simply want simple pills. The dye they use gives me a panic episode every time. A pulmonary doctor is monitering my lungs. So far it's ok. You know what's best for you. Go with your instincts.

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