Hi all, I was diagnosed with AF at the end of January after being admitted to hospital for a knee arthroscopy to repair a torn meniscus. I was eventually discharged with Apixaban and put on a waiting list for a cardiac appointment. One (normal) heart scan later and it was decided to list me for a cardioversion, which was successful for around 6 hours. I have a Kardia mobile so saved some time by emailing the results to my Cardiologist. He then prescribed me the dreaded Amiodarone and relisted me for another DCCV. I am now in sinus rhythm again and feeling a lot better. I have a follow up tomorrow and want to know the best questions to ask about Amiodarone. I know the side effects are quite bad long term and this worries me, especially the ones with your eyes as this has the potential to threaten my career. I just don’t want to be left on it just because it’s effective if it’s dangerous long term. Should I ask about other treatments?
Amiodarone long term: Hi all, I was... - Atrial Fibrillati...
Amiodarone long term
I'm not medically trained, but would suggest you ask about taking Flecainide instead. A lot of forum members on here take it and for me it's been the best AF controlling pill ever.
Jean
Hi Jeanjeannie50,
Thanks for the reply, yes I have noticed that Flecainide is mentioned quite a bit on various forums for AF..will look into it and ask about it tomorrow. Although I’ve also heard that Amiodarone is the most efficient. But if I can be prescribed something less toxic that works then happy days. Thanks again
A wise doctor once told me Amiodarone does not have side effects. It has effects! Under European Society of Cardiology protocols it is the drug of last resort and should not be taken long term/. Often used to help with DCCV (cardioversion) three months is ideal max. I think.
Thanks for the reply Bob, I did think it was a last resort type of medicine. My Cardiologist did say that he thought that a single pronged approach (ie cardioversion only) probably wouldn’t be enough to keep me in sinus rhythm. I wonder if he is going to use it to increase the chances of an ablation working which he did mention before?
I have to say though for all it’s perceived ills, it’s pretty good at what it does - I am now in NSR and my pulse has returned to 40bpm which is roughly what it was before all this happened. It’s just a shame that the bad comes with it long term. Cheers again
Hi Snez, I am writing because I note above that your pulse has returned to 40bpm. Can I ask if your AF has arrived as a condition for you arising from Bradycardia not being addressed? The reason I write is mine did. I too was given Amiodarone to assist before my second cardioversion.
If you read the contraindications of Amiodarone, this drug should not be prescribed to someone with a history of bradycardia. It made me quite ill within weeks of taking it..... If this is not the case for you, then all power to your elbow, but just keep a close eye on things. My reactions commenced within weeks and I did not recognise them for what they were initially.
Regards,
Mickey16
Hi Mickey, sorry for the late reply, life got in the way as it does. I’ve been bradycardic for a while as until recently I ran 5 to 6 times a week. I have low blood pressure and a low pulse, but the truth is there are many triggers which could have been relevant for me where Afib is concerned. I suspected in November that things weren’t right as I always wear a heart rate monitor whilst running, and it was way too high for my perceived effort. Before discovering it in January, I had a bad case of flu like symptoms and in particular a really persistent heavy cough. I think Bob said before that this can damage the vagal nerve which triggers it. I also went straight from that to a holiday and as most people do, drank too much too regularly. Then I had an operation to my knee which also could have been responsible. So can extreme exercise, and I used to put my body through hell when racing and training.
I’ve had no adverse effects as yet, but I am worried long term as I have another condition called Lynch Syndrome which I should be taking aspirin for as a chemo preventative measure. So there are lots of things to ask tomorrow.
Thanks for the info about Bradycardia and Amiodarone though, that’s defo worth mentioning tomorrow.
Good luck with your treatment, hope you find a suitable one without the effects of Amiodarone 
Hi Snez
Hope all goes well for you today? and thank you for your good wishes. I had an ablation to knock out the rogue signals that were occurring in my heart due to the Bradycardia and a pacemaker was fitted. I do not take any heart meds, only a NOAC. I am a whole lot better now :))
My understanding is that for Bradycardia there are no meds for this condition. A pacemaker is the only solution currently. For me, Bradycardia was causing a Atrial Flutter. From what you describe you have complex health issues and I hope you get some answers today.
Kind regards,
Mickey
Hi Mickey,
Yes my health is not exactly straight forward so thanks for that but I stay positive as knowing about them is the biggest weapon you can have so I’m thankful for that.
Today the cardiologist (thankfully) was adamant that I’m not being left on Amiodarone. Fortunately he thinks long term it isn’t good. He has listed me for an ablation and I’m glad that I won’t be on Amiodarone for too much longer hopefully. He says that I’m a ‘perfect candidate’ for it whatever that means so hopefully will sort it soon.
Glad your sorted now, stay well
Hi s just had amiodarone removed from my list of meds. My neurologist said it’s a neurotoxin and considered poison long term. Legs and feet numb eyes blurred and diagnosed with hypothyroidism this was all within one year. Saturates the tissues so need to wait some time before new meds can be introduced. It kept me out of AFIB after 2 conversions but long term killing me. Good Luck
hi Maagaa,
iv'e been on Amiodarone for over 2 years and was diagnosed with hyperthyroidism over a year ago, but the Endocronolagist said he don't think amiodarone caused it but i know otherwise
The long term effects of amioderone are quite onerous. I could not tolerate it short term. Like you I was placed on it after initial cv only lasted several days. I was then put on Tikosyn (dofetilide) which requires 3 days in the hospital to be continually monitored. There are no dangerous long term effects and have been in NSR for over 6 mos without side effects. Ask your EP if this is available in the UK as I am in the US and not sure. Best of luck.
My Dr did tell me about that drug I am in the US but going to try something else which my electrophysiologist said was just as good and no hospital stay but first he wants some amiodarone out of my body to see if my balance improves
Part of the issue of Amiodarone long-term is the dosage. I was on a small dose of 100mg for over 10 years (with three 1-day a-flutter bouts). Each year I had blood work, annual Pulmonary Function Test. My liver function went from mid-range to upper-range (never treated) and my thyroid function required a daily thyroid pill. After 10 years my doc says "time to get off this drug" and I had an afib ablation Jan 2017. Three months later I went off Amiodarone and Metoprolol. I felt great until Feb 2018 when a-fib/a-flutter returned. Back on Metoprolol and slowly converted in 2 weeks. Second ablation was early April, using tools and methods not available in early 2017. Doc thinks that should be all I'll need. Al
Wow 10 years is a long time on any medication, let alone that one. I think I want to ask about the ablation route, just to try and be meds free eventually. But everything just takes so long. Have to be patient and keep positive I guess.
I hope your ablation works for you, fingers crossed
Cheers
Good morning Snez. I suggest you go to the NICE website and insist that your cardiology department follow the NICE guidelines for Amiodarone. I was prescribed it but refused to take it as the guidelines had not been followed. I then had my ablation and so far all good.
Excellent news!! I know that ablation isn’t a miracle cure and sometimes needs a few goes at it but I’m glad it seems to be working for you
I have an ICD fitted in 2010 and have been taking Amiodorone since. Was on 200mg for many years but 100mg for the last 3. I had a small nodule removed from thyroid in 2012 so take Levothyroxine every day - amounts have varied over years depending on blood tests which I have regularly. I don't know if thyroid prob was due to Amiodorone but know that can affect it. I have had no problems with Amiodorone and also take Bisoprolol Ramapril Aspirin Simvastatin and Furosomide. I am thankful that my heart failure nurse specialist sees me regularly to monitor my condition. Had a cough and crackle for few months recently but scan showed clear lungs.
Hi Snez and all other AF sufferers.
I had my 4th ablation yesterday and my EP told me this morning that he was putting me on Amiodrone for a short term. I'd never heard of it as i have been on flecanaide then bisoprolol over the past 6 yrs. After reading this I confess to being a bit worried and feel i may have entered the last chance saloon. I need to get some questions answered. Thanks
Sounds like you’ve had a lot to put up with, 4 ablations is a lot. Amiodarone does have unwanted effects (like any drug) and not everybody experiences the worst of them. My cardiologist told me today that probably a third of patients experience the unwanted health issues associated with it. But, it is good at what it does, just a shame about the cons that come with it
Good luck I hope you get better
Hello, I have been taking Amiodarone for 15 months, It has done a great job at controlling my AF but I also developed overactive thyroid, after 6 months. I have kept on taking it but have gradually reduced my dosage now to one 100mg every five days - freewheeling and waiting for the AF to return!!! I know it stays in your system for ages so am still getting the benefits - still AF free, but the thyroid symptoms are horrid, especially depression, tearfulness, mood swings!!!! My GP referred me to the Endoctrinology Dept at my local hospital, but sent a letter back saying inappropriate referral, because it was caused by the Amiodarone. My cardiologist has said Cardioversion would not work as have an enlarged left atria. A GP has recommended a good EP to me and my next step is a private initial referral. Dr Sanjay Gupta recommended coming off Amiodarone to let the thyroid settle and taking Flecainide (this was just via a private message to his forum on Facebook). My eyes are getting quite blurry. I had my eyes tested at Specsavers recently. The optician knew all about Amiodarone and said I had a small build up of crystals but nothing significant. All the best to you, Amyrosie.
Thanks for your reply Amyrosie, seems like you’re one of the people unfortunate to experience the ill effects. The thyroid ones do sound horrific, cannot be easy living with those and everything else. I think possibly you do need to have the conversation (if not already) to discuss alternative treatments as living with the effects must be hard.
I think the type of treatment sometimes depends on the opinions of each consultant, from what I have read on here some are pro Amiodarone and others are very cautious in the way/ length of time they prescribe it. As I said, luckily mine confirmed to me this morning that he wants me off it ASAP so I didn’t have to have the ‘battle of wills’ I worried I might have initially.
Good luck with whatever comes your way, I hope it works for you as it’s hard work living with untreated Afib,
Snez
If you go the route of coming off Amiodarone and starting Flecainide, remember to remind the doctor about drug interactions. This means a 50% dose reduction in Flecainide, for as long as Amiodarone is in your system, usually taken to be 3 half lives, ie 6-12 months. Last year I had to argue hard with my doctor. He wanted to prescribe 200mg per day. I reminded him that my normal dosage was 100mg. I then reminded him about the 50% reduction. He still wrote 200mg daily down on the prescription
I was on Amiodarone for several years. When I changed cardiologists, the new one looked horrified and changed me to Bisoprolol. The Amiodarone gave me an under active thyroid and I am now permanently on Levothyroxine. It also made my hair fall out and put deposits in my eyes. Since stopping, my eyes have improved to the extent that I need weaker glasses. Sadly my hair remains very thin.
I have been really well with Am'which is an amazing drug. Someone here saI'd Mother and Uncle on.it for 20+years.All the blood tests for thyroid and liver have been fine
No eye problems.I keep off alcohol to keep heart steady but it must be good for liver as well.
I think drug companies tend to list every conceivable ailment/side effect on the planet?just to be on the safe side.
I actually feel better now after say 2 years on it than I did before I got the AF
I was on amiodarone for 3 months and had to come off it due to it ruining my eyesight..the next best was Flecainide...but now that Ive got use to that...and its now a Crt pacemaker
Good luck ...were all different
Hi I’m fairly new to all this had cardioversion last year, which worked and lasted 1 year, i saw my cardiologist yesterday and she has put me on amiodatone in the hope it will put me back into NSR or help with the cardioversion as the lastest one failed. She said that she would only keep me on it for 6 to 12 months from start of NSR. Regular blood tests every three months. Having read various responses to this drug, I was happy to go along with it knowing that it is not to be taken long term , in her opinion. I also take bisoprolol
Kind of scary comments, here, on long term side effects. I suffered through most of my 50s with AFib and AFlutter, which severely restricted my enjoyment of any sports with an aerobic component - cycling, hiking, trail running were all out, out, out. Even downhill skiing, where you have gravity as your 'friend' was challenging. I have had 2 ablations, probably a dozen cardioversions, and nothing, really, sticks like getting back in sinus rhythm and taking amiodarone. I think the increase in floaty liver spots in my eyes might be a side effect (now that I look at this thread); all I know is that I can ride up a moderate hill and ski fairly long stretches without hanging over my poles in exhaustion. I told my cardiologist, 'look, I will trade ten shitty years for two or three half decent ones, and (eight months since going onto amiodarone), things have improved quite dramatically and there's an enjoyment of life that cannot be denied. Nothing else was working, so it's amio for now.
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