Hi everyone,
I have just received a letter from my cardiologist saying that I am going to be put on Amiodarone to help keep me in rhythm after my cardioversion. After researching the drug I see it’s a black box drug with toxic nasty side effects. Is it ok for me to refuse to take it and ask for an alternative? I know he knows best but I’m terrified by the side effects and don’t tolerate drugs very well and always suffer side effects. Feeling really anxious 😟 it says it can be fatal.
I was on this for 3 months after my EP assured me that it was safe to use as long as I was monitored for side effects. It was certainly effective and I suffered no side effects although it’s not something I would want to be on long-term. There are certainly people here who believe that it has damaged their thyroid.
I’d ask for an alternative if possible. I was on it for a short time as a drug of last resort after I’d been through so many medications. In fact I was on three drugs together to try and calm my heart - Atenolol, Digoxin and Amioderone. I had to go off the Amioderone after a couple of months because of side effects - it affected my skin, my lungs and my liver function. Everything settled and went back to normal after a couple of months thankfully.
I have been on Amiodarone for 3 months and had a thyroid test last week, slightly higher but well within the limits. I was put on it in conjunction with 1.25 mg Bisoprolol as it was the only drug that got me back in normal heart rhythm during a brief spell in hospital following a short series of AF episodes. My normal cardiologist has said I will be on it until my 3rd ablation and with Covid not sure when that would be, which is not ideal as I know it;s not a long term drug. Same old story I think about how different we all are and how different things work for one and not another. Do hope things work out for you asap. Kind regards Max
I was nearly put on it and had the same fears you are having, but I gather it's a very useful and generally safe drug for short term use. It's in the nature of the Internet to gather mostly people's negative experiences, and packaging leaflets, by law, have to tell the worst-case scenarios, so it's very easy to draw the wrong conclusion about any drug. My own cardiologist said that it is an invaluable drug when used correctly. I'd always be guided by my doctor, but certainly have a conversation with him or her about it.
Steve
You mustn't be afraid. Fear in itself will cause reactions that complicate matters. I was petrified of taking Amiodarone due to everything I had read on here. I delayed taking it for a while but then I beat the fear. I have now been on it nearly two months. Any side effects are hardly noticeable for me, and I know I won't be on it for long.
I was put on Amiodarone for three months following my second ablation. Like you I was very worried about side effects and questioned its use. I was assured it would help so gave it a go. I must say that I did feel awful but no specific side effects for the whole three months. However it did no lasting harm and kept me in sinus rhythm which I stayed in for two years. When it came to ablation 3 in September I did discuss it at length with my EP and he agreed no amiodarone other than a loading dose immediately after the ablation. This ablation hasn’t worked for me however but due to lots of reasons. What I would say is do discuss it and in my experience they will listen and try and suggest alternatives if you are really worried. As someone so rightly said you mainly hear the negatives online and sometimes the advantages outweigh the disadvantages.
Thank you everyone, I will have a long chat before it’s administered and give it a go as I don’t want heart failure or to get worse. Would be awesome to be in rhythm again x
Hi Mollykin, likewise with me I panicked when I read of all the side effects that this drug could occur. Discussed it with my daughter, decided to go ahead - what other options are there?!!
Must say it was the best thing, be aware of the sun!! Plus I was greatly monitored by my GP. I must have been on it for 5/6 years. Did had to have a couple of ablations, tachycardia/brachycardia, little brats that they are! Thankfully my excellent cardiologist brought me through all if this until his decision to go for a pacemaker.
So now off the Amiodarone, wonderful, born again!!
Go with it Mollykin, we must all have faith in our wonderful Cardiologists.
Am here if needed.
Magsxx
I was asked to go onto Amiodarone following my 2nd CV. The 1st lasted almost 6 months then back into AF.. I too read all about the "possible" side effects and turned it down. He spoke to me again and suggested I try it and see how it goes. That was 20th Jan 2020, I'm still in rhythm and no problems with side effects. It did cause a little constipation but a couple of prunes a day fixes that. My advice? Suck it and see, it's better than AF, no breath, no energy, swollen ankles and flooded lungs. .
My wife took Dronedarone for just 1 month and it brought her out in an all-over body rash which took some time to clear. We then learnt that this drug causes photosensitivity so be careful to avoid the sun (not that we get much in the UK). My wife's reaction occurred after spending most of the day in strong sunshine when attending an August wedding so it may not have been a problem if she hadn't had the sun exposure that day. One advantage it has over Amiodarone is that it doesn't cause thyroid problems.
Hi Molly well I was given high dose Amiodarone and Magnesium for about a month before my second conversion. My first conversion without meds only lasted 5 days then back into AFIB. Second one with Amiodarone lasted 3 years back in AFIB now. It takes about 18 months to leave the tissues and then you’re on your own. I now have hyperthyroidism, neuropathy, numb hands and was never told about the horrible after effects of Amiodarone or I never would have taken it. Some people have no regrets but I did for sure. If I was you I would ask for an alternative. Much Luck
Hi Molly,
I was put on Amiodarone after I was suffering from episodes of AF that were affecting me at work and at home. My Cardiologist (very experienced) put me on it, think it was 200mg for a start but over a year this was gradually reduced and I had my bloods checked and all ok. ( I was however very careful when in the sun on holiday).
The transformation from having AF and not having any episodes was for me quite spectacular, though it took about a month before it started to work (and it also takes as long for effects to go when stopping it though I was on about 50mg in the end).
I would not hesitate to have it again, but as with any drug it’s side effects can affect you but you will have blood tests to keep an eye on these.
Amiodarone has been in use for a long time and the reason it is still used is because it is very effective and ‘safe’ if properly monitored.
I count myself as lucky that I tolerated it so well and it gave me my life back. Two years later I have only suffered a few bouts of ectopics and one or two AF episodes, fortunately short ones. Had the drugs not worked ablation was my next option, but to be honest I was more worried about having one of these than taking the drugs (possibly because I’m a nurse and don’t like being on the receiving end of needles!).
So looking at some of the replies you have had you can see that advice goes from one end of the spectrum to the other. Talk to your cardiologist (I insisted in seeing the senior consultant after I was passed around by locums and registrars who I did not have confidence in) and good luck with what ever treatment you have.
I was on it for six months with no problems. I said to my arrythmia nurses that it was a horrible drug and she corrected me: "It's a brilliant drug but with side effects for some people". I preferred it to betablockers as they made me feel awful (and didn't work!).
But of course you can refuse to take them. Its your body and you make the final choice
I was on amiodarone and it did affect my thyroid; ended up with medication induced hypothyroidism. Had to add levothyroxine to my list of daily medications. Amiodarone was effective in controlling the afib after my 2 ablations, but...
I found Amiodarone gave me terrible side effects and normally I do not suffer from them. I insisted I got an alternative but I had to tolerate the side effects which made me ill 3 months before my cardiologist prescribed an alternative. Chase him if the s/e’a are too severe
Was taken off Amioradone after Valve replacement surgery. 5 weeks later had a stroke caused by Amioradone induced Overactive Thyroid. Which sent me into very fast AF. That was 16 months ago still weaning off steroids and back in AF.
I had read all about and didn’t want to take but GP agreed with Cardiologist that it was a good idea.
Put me in NSR for a while.
Hi, I was on Amiodarone before and after my ablation procedure and I had no side effects. My cardiologist advised me that Amiodarone works well, and I agree, but only for a short amount of time. After my ablation procedure, I was on Amiodarone for a couple of months and still no side effects. My cardiologist also advised that if you are on Amiodarone for a long period of time, then the side effects will come into play. I suggest to use Amiodarone for a short period of time only. I hope this helps.
Some people can tolerate amiodarone and the related dronedarone, and others can't (I had to argue against being sedated and put on a respirator in ICU - they wanted to ring my wife at 1:15 am). There is a documented procedure for a patient taking amiodarone in secondary care, being handed over to a GP; make sure this happens. You should have a creatine test (blood sample) to establish the baseline as this will need to be checked for liver function.
Signs that you are not tolerating amiodarone or dronedarone, any of the following:
* your urine turns coffee coloured;
* a light non-productive cough that continues;
* dropping blood oxygen (SpO2) to 92% or lower.
you need to contact your GP / Cardiologist immediately - they may not be aware of a serious reaction as it's 6 in 100,000.
If you are admitted to hospital because your blood oxygen is dropping, clinicians may suspect that you have long-COVID or community aquired pnuemonia as a chest x-ray will show a "ground glass" mass in one or both lungs, but it will be in a different lobe than pnuemonia (I wasn't diagnosed until the third admission). It is likely that this is pulmonary toxicity that is also known as cryptogenic organising pnuemonia. Be aware that if you have AF in hospital you may be put on a drip that contains amiodarone (that happened to me despite the reaction to dronedarone), check the labelling on the drip. If it's pulmonary toxicity or cryptogenic organising pnuemonia, the clinicians should contact the North Bristol Lung Institute at Southmead Hospital, Bristol, who treated me and a wrote a publish paper. Treatment is warmed and humidified oxygen at 20 litres / minute and, prednisolone or similar corticosteroid.
No doubt you have read about the other reactions.
Stay well, I'm sure you'll be fine.
John
Dronedarone is effectively amiodarone with the iodine element removed. From my experience if you don't tolerate dronedarone you are unlikely to tolerate amiodarone and vice versa.
Amiodarone 
TERRIFIED AMIODARONE
Amiodarone
Amiodarone
