A friend of mine in America has been prescribed this drug and says it is very good for A.Fib. I wondered if anyone in Britain has taken it and what they think of it. Checking it out on Google it gives a variety of possible side effects, some good, some very poor. What is your experience please?
Advice on amniodarone: A friend of mine... - British Heart Fou...
Advice on amniodarone
Written by
Botolph
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57 Replies
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Hello, I have been on Amiodarone for about 2 1/2 years.. I have found it very effective. Your doctor will monitor you and give you regular tests but I found it very helpful while waiting for surgery. I have just reduced the amount I take following surgery and am hoping that I may be able to come off it altogether soon but it is certainly effective. Hope this helps.
That’s a very positive response. Thank you. I’ll ask my cardiologist whether or not he thinks it better than Bisoprolol which I’m on at the moment.
Hi
I am a secretary for Cardiology and I just wanted to say it depends if your GP can prescribe it because we have to send a Transfer of care form and if they accept it then they will do monitoring bloods but if they won't then you will be monitored by the hospital.
Hopefully your GP will be able to monitor
And prescribe it
if you out that search term into the search box top left you’ll see what others have said, and you might be able to talk this over with your dispensing pharmacist
Many thanks. Will do.
I was on this drug for around 8 months whilst I waited for my Ablation. I lost half a stone on it, that was the only side effect I had. It was amazing at keeping my heart rate steady
I was on it a few years ago, along with Digoxin and Atenolol (it was quite a cocktail to try and contain my heart). I was only on it for about 2 months had to go off it as it affected my liver, lungs and skin (you have to stay out of the sun).
My 13 year old son is on amiodarone 200mg once daily for v-tach episodes. He has been on it about 2 months and has to be regularly checked as it is quite a high risk drug. It has a long half life and takes a while to leave the body should any side effects start to occur. Touch wood, so far my son has none although I don't think they anticipate him being on it long-term.
Hi,
I’ve from the UK and have been on Amiodarone for almost 2 years. I’m 45 so young in medical terms and too young to really be on this drug for life but have been taking in run up to cardiac surgery. In terms of helping with AF, it certainly works as I have about 2% breakthrough per week and for most of that I don’t notice. However, it has damaged my thyroid and made mine under active. I’ve recently had surgery and afterwards had sepsis and acute pancreatitis- not sure if Amiodarone had anything to do with it but will let you know if it’s turns out that it has.
Oh and burning in the sun - had to wear factor 50 even on mild days…..
Hi, Amiodarone is my best friend! I have administered it on 3 occasions and following Several cardio version & 2 successful ablations I have held in sinus rhythm until the Amiodarones withdrawal phase. Monitor bloods, hydrate , use sun block even on cloudy days ect as your cardio team will advise you. I've not experienced any side effects using amiodarone.
Hi I’ve been taking it for about six weeks for persistent AFib and then following. Cardioversion. My heart rate is now strong, slow and steady but I have lost a lot of weight, have double vision and shaky hands. I also take Bisoprolol and Spironolactone and Furosamide so I am not sure whether it could be any of these causing the problems. I have a review in a week so I am hoping my GP will be able to shed some light on it and if so I will let you know.
Yes it will be interesting to know if your GP can judge which medicine might be causing your symptoms.
Horrid stuff, I suffered from very bad hand tremors brought on by any exertion of any sort. I couldn’t hold a cup or mug and at one point I couldn’t use a knife and fork and had to be fed by my other half.
Thank you for the warning
Hello there, I'm in the UK and been on it for three weeks... Started off with three times a day for a week, then twice a day for a week and now once every morning. I too was concerned about side effects after reading so much online. I was reassured on here and in Facebook groups how many people are on it and how effective its been. I don't think I've had any side effects so far and it's early days, plus winter!. My GP has been informed to give me an ECG in a month and then check bloods every 3 months, they need to just keep an eye on things as it can affect a few organs in some people. I have also been advised in Facebook groups that I should get eyes checked every 6 months as it can affect vision. I haven't stopped any other heat meds either, still on beta blockers (Carvedilol), dapaflozine and a couple of other blood pressure meds
Basically just keep an eye, I'm told it's a great drug at controlling tachycardia which in my case may help me get my driving licence back!!!
Well I hope you are allowed to drive again. Thank you for all the detail.
hi I was put on amniodarone and it worked very well at keeping my AF under control. I was on it for about 12 months but I couldn’t go out in the sun which I hated being a naturist. And it gave me a over active thyroid which was off the scale I lost loads of weight and had to come off of it
Thank you for this. After reading yours, and other people’s replies, I think I’ll wait awhile before asking my GP about it especially as I have a holiday booked in New Zealand in February and the sun will be difficult to escape.
Also I was told if I went in the sun it could turn my skin blue and it would be irreversible
I found the blue tinge did go when I stopped the drug , it really caused strange effect in my eyes .
Reading about the detrimental effects of this drug I’m surprised it’s still being prescribed. And difficult to understand how it can affect so many parts of the body.
I had a eye problem also
I was on it for a couple months in prep for cardioversion (often used for that in the UK). It's very effective at achieving or sustaining NSR but many people experience issues. I developed underactive thyroid (permanent) and had some eye issues that were resolved. Had to come off it and tried dronedarone instead which was not as effective. Third ablation worked for me and now AF free after 20 years. No idea how long it will last, but so far, so good (18 months). Usually shorter term use of amiodarone causes less problems. You are monitored due to potential liver issues. I think it depends how burdensome your AF is and what you are wanting to achieve but it needs careful consideration before diving in, would be my advice.
Thank you for this. All very helpful.
I just came off it two weeks ago after taking it for three months. It completely eradicated my arrhythmia and I've now been put on a betablocker combined with something else to control the afib.
No side effects whatsoever and very pleased with the outcome.
Such a contrast from many other replies. But I guess that’s the nature of the human condition. We’re all different and I won’t know until I try it. (or not)
after CABGx3 my HR shot up to 170 which isn’t good. After 48 hours on amniodorine it was at a normal level. I was on it for 8 weeks. On a routine blood test 6 months later my TSH was 100+ and T4 was 4 indicating hypothyroidism. It turns out my thyroid was completely fried by the amiodarone. I will need to be on levothyroxine for the rest of my life to supplement the hormones I’m not producing naturally. This happens in about 3% of all cases of taking amniodarone. It’s recommended to take for 8 weeks max. Unfortunately it was necessary to save my life after surgery
Thank you for this second reply especially the bit about it should only be taken, advisedly, for eight weeks.
Hi I have hf and af I was put on this drug about 4 yrs ago and have had no problems it keeps my af in sync I have a blood test every six months at gp and ecg and I am monitored by my local hospital in cardiff every six months my cardio nurse said that my consultant was thinking about whether to take me off if or not and I said as long as it doesn’t effect me I am quite happy to carry on taking it I am an 80 yr old male was told when I started to take it to stay out of the sun or my skin could turn grey , I where a wide brimmed hat if my arms are uncovered I put factor 50 s f p hope you are ok
Glad to hear you’re doing just fine on this controversial drug. Long may that continue. As a one time researcher I’d love to do some work on the reasons why some people cope well on it and others suffer from all sorts of side effects.
I wouldn’t touch it personally. There are many other drugs that can do the job without all the toxicity. There are a lot of sites about this drug. Do check them out.
Amioderone was prescribed to me in NZ. After 11 days i took my bp one night at 11pm and found it was very high. I waited 10 minutes and found bp still high so called ambulance. I flat lined . Now i must never take it again aparently..
I’ve been on and off Amiodarone for a number of years now. Initially I was placed on Amiodarone to deal with Arrythmia. Had an Ablation and came off Amiodarone to experience an over active thyroid (Lost 10 Kg and couldn’t sleep). Currently I am back on Amiodarone (150mg daily) and now have an under active thyroid.
It has been great for treating arrythmia but not so good for my thyroid.
Gave me tremors. Hated it and stopped. However as I take othe drugs it’s difficult to pin down. Biggest issue though if it doesn’t agree with you is the extremely long half life. Months before it’s out of your system
Hi! Sorry just catching up with all these replies! Great question Botolph and opened up a lot of response!
I have recently had a single bypass, and consequently suffered AF episode while in hospital. I was sent home with Amiodarone 200mg x 3 daily now reduced to one a day, Bisoprolol 2.5mg and Furosemide plus usual statin and aspirin! These are to continue till my 6 week review, then 🤷♀️ To date I don’t seem to have any side effects, although I do notice when I get up in middle of night I can feel my pulse in back of head till I get back off to sleep, although this is becoming less. So thinking it is still my heart settling down , but like you I have read all the “ bad press” with this drug and will be armed with loads of questions when I have my check up. As yet I have not been scheduled for any tests to check body reaction etc . Honestly it does make you wonder plus I am still getting sharp pain in my left breast/ guessing it’s early days still only 3 weeks post op, so doing as I’ve been told / realising all the internal healing that has to happen! However I will be chasing my 6 week appt if I don’t hear soon, as reading responses this is definitely a drug that needs to be closely monitored. Perhaps no more sunshine holidays then ? but…so thankful to still be around. Good luck to everyone in their journeys.
Yes, and good luck to you too when you go for your 6 week check up. I’m so grateful everyone here has told me a bit about themselves and their reaction to the drug. My inclination now is to question the need for it should I ever be prescribed it.
The patient insert leaflet that comes with the tablets does say that the hyperthyroidism and trembling referred to by others only affects less than 1 in 10 people. The more than 1 in 10 side effects are nausea, change to taste and sunburn. But, it does sort of say that it's used where there's no alternative.
For what it's worth, I took it for 6 months, very effective, didn't notice any problems. I was reluctant to come off it but the registrar said that it can affect the thyroid. Never had AF since (though that is only since March).
That’s interesting. Has your thyroid been checked recently?
No I haven't! The gp checked it once near the beginning and that was it, but nothing seems amiss health wise
My husband was on this for a while but eventually had to come off it as can affect the thyroid. I'm sure it will be carefully monitored. Best wishes.
I’ve been on it for over 3.5 years and it’s like a wonder drug for me. Completely put a stop to my AF and ectopics. I believe it’s the most effective of all the drugs but can be toxic for some and tends not to be prescribed for long term use. After about a year my dose was reduced to 100mg daily, which reduces the risk of harmful side effects. You have to be monitored with blood tests etc every 6 months but so far so good for me. That said, it doesn’t suit everyone and some people have very serious side effects. Just about everyone taking it has to be very careful in the sun or even on a bright day but you get used to wearing a sun hat and putting factor 50 on - small price to pay! Also a lot of people get corneal deposits- I have them but my consultant ophthalmologist confirmed that they are of no consequence whatsoever. If you take it, you have to go into it with your eyes open and make sure you’re monitored regularly.
Couple of really interesting threads going on today , Amiodorone and Cardioversion. It's strange how we are all affected in different ways with different drugs, I've been on 10mg Amlodopine for 20 years and never had swollen ankles, been on 20mg Ramipril for 20 years and no issues. Been on 2.5mg Bisoprolol since April and feel wiped out so consultant said wean off them as my recent 24 hour holter for my persistent (since July) A Fib showed RHR at 38 overnight but never above 120 in the day and Echo ok with EF at 61%. I've just been "offered" Amiodorone and a Cardioversion, I'm so fatigued by a combination of the Bisoprolol and A Fib that I'm inclined to go for both and if that fails go to presumably ablation. Great insights from so many lived experiences..
I would recommend both the amiodarone and cardio version combination. I really believe it will help you. Good luck
Amiodarone was very effective post surgery to control my AF, however gave me bad side effects of nerve pains/ pins and needles, jerks, & affected my thyroid gland (hypothyroid now). So I had to stop it. But not everyone has side effects from it, though your thyroid function should be checked before starting it and at times whilst on it.
I shall definitely think twice if it’s suggested by my GP.
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