Amiodarone questions

[Polly159]

Went on to amiodarone about 6 weeks ago and have recently posted something similar, but still have questions:

- how does amiodarone work? Is the aim to prevent episodes or to curtail them?in the beginning it really cut down length of episodes. There were times during an episode it was as if the drug was 'fighting back the afib......

- despite still, obviously being on Amiodarone, length of episodes is steadily creeping up again and the severity of them (Chest pain, heart banging about as well as the 'normal' arrhythmia) is also increasing plus headache is now added in (Not there before) ' wondering why? (All else - diet (now heavily sugar low and plant based) activity, work - the same.)

- waiting for initial consultantation 're ablation (I'm sure will be review of AFIB condition plus 'lifestyle' etc which is understandable). In the meantime, should I contact cardiology GP 're worsening symptoms? I know (and again understand) that often with most illnesses/treatments it involves a "waiting game", but don't want to let the waiting cause a downward spiral in the afib.

Having said all that, I have to say, too, that if NSR were a person, I would hug them tight every day, shower them with flowers and wildly expensive gifts, and never stop telling them how much I loved them! The feeling of being in NSR again after afib is one if the best in the world.

Before afib, I never gave a second thought to how much a 'simple' (!) a thing as a steady heartbeat mattered.

[BobD Volunteer]

Amiodarone is an anti arrhythmic drug which is supposed to stop you going into AF . It is a very toxic drug with lots of side effects, most of which are unpleasant, so if it is not working then you need to ask why you are taking it. I would not be happy like this.

[Polly159 in reply to BobD]

Thanks, Bob, thankfully no side effects .......yet, but I know they are not good at all. Will give the cardi dept a ring on Monday.

[BobD Volunteer in reply to Polly159]

Matt Fay once said Amiodarone doesn't have side effects --- it has effects! It also stays in your body a long time after you stop taking it.

[Lilypocket in reply to BobD]

Sometimes we don't have a choice Bob. After my ablation 5 weeks ago my heart has been all over the place with Flutter, Tachy and Afib. The cardioligist said my heart needs a rest to help healing and nothing else works. I'm between the devil and the deep blues sea.

[Norm in reply to BobD]

Bob, I don't want to be pedantic but you say Amiodarone is "supposed" to stop you going into Afib. 1. Is this proved medically and 2. They appear to give in when you are are already in Afib. Thanks

[Hidden in reply to Norm]

It is given to convert you to NSR and to keep you there. It is medically proven.

However, for me it didn't revert me to NSR , I needed a cardioversion to do do that, but it did keep me in NSR whilst I kept taking it.

For me though the side effects were hyper photosensitive to the point where I was getting sunburn even inside my house, in February, wearing factor 50!

It also damaged my thyroid.

As nice as NSR was, it just wasn't worth it.

I will never take this drug again (and have refused twice)

Keep your eye out for the side effects, they can be pretty nasty

[Polly159 in reply to Hidden]

Thanks Miles Very helpful.

[Desanthony in reply to Polly159]

You should be having full blood tests every 3 months or even 6 weeks so that they can check your thyroid. I was on amiodorone for 3 months - taken off it on Sept 18th was onfor a few weeks before a successful cardioversion and for some weeks after and the blood tests showed it was damaging my thyroid. I am to have another blood test in December to see if the thyroid is getting back to normal.

[Polly159 in reply to Desanthony]

Thanks, Desanthony. I'm already on Thyroxine as I've had an underactive thyroid for over 20 years. Will bring up that point, though, when I see the doc tomorrow.

Take care

Polly

[Desanthony in reply to Polly159]

Sorry I shouldn't have said damaging but affecting my thyroid. It should all go back to normal in the months after amiodorone stopped which is why I am having another blood test in 3 months time.

[Lilypocket in reply to Hidden]

How much were you taking?

[CDreamer in reply to Norm]

It’s the BIG GUN in the AF medical armoury - usually brought out at moments of last resort - but it is the most effective drug there is for converting back to and maintaining NSR - but it is also the most toxic.

I worry now as my husband has been on it for 6+ months now - so far, so good in that no affects but I think it is only a matter of time. He was, however, in very poor health and deteriating and it has given him 6 months of relatively good quality of life. His cardioversion failed and he was not a candidate for ablation so that was his only remaining treatment option.

[Polly159 in reply to CDreamer]

Thanks, CDreamer. Hope something else can be done for your 'better half. As always, I'm amazed at how variable the efficacy and side effects are on people.

[Beta44 in reply to CDreamer]

A relative of mine, now in his eighties, has been taking Amiodarone for at least 10 years apparently with no side effects. I guess it affects different people in different ways, and he is one of the lucky ones, as it is a most effective drug for him.

Peter

[Polly159 in reply to Beta44]

Thanks, Beta44. It's good to hear the amazing range of responses to the many different drugs. (Seems like amiodarone is the 'Marmite' of them all!) Wouod be brilliant if there was the money to investigate all the variables and why some drugs work with some people but for now there is quite a bit of 'trial and error'.

Thanks again

Polly

[BobD Volunteer in reply to Norm]

I love it when people pick on one word Norm. As others have said (and this is under ESC protocol) Amiodarone is a drug of last resort. Maybe I should have said "designed" but the fact is that strong as it is some people will not respond to it whilst the toxicity can still do really nasty things to people.

[Spoiler in reply to BobD]

My thoughts about any drug, why take it if it is not helping you. You have the problem compounded with the drug effects. My poor Daddy thought if it was prescribed you needed to take it😢

[Polly159 in reply to Spoiler]

Take your point. I suppose I was 'giving the drug a chance' to do its work (and hoping that it would). I think my other question was 're dosage - would an increase be worth trying.

Take care

Polly

[Spoiler in reply to Polly159]

I know people that it has helped, but unfortunately neither myself or my Dad could take it and he was the type to wait until a Dr appt rather than call to get advice from his Dr. about any drug they prescribed.

[BobD Volunteer in reply to Spoiler]

You might think that but I couldn't possibly comment (House of Cards). We should not give advice regarding drugs which must be discussed with your treating doctor.

[Polly159 in reply to BobD]

Thanks, Bob, I was really thinking out loud and debating with myself whether or not to stick it out a bit longer or talk 'dosage' with the doc.

Have decided on the latter!

[fairgo45 in reply to Norm]

Didnt work for me just have me lung problems get an ablation .

This poisonous drug should be banned

[Polly159 in reply to fairgo45]

Thanks Fairgo - hope you've found something else to relieve AF.

[Thomas45 in reply to Norm]

It gave me chest and left arm pains, and a feeling of panic. For the 10 months I was on it, I never, ever overtook another car on the motorway. It didn't significantly reduce the episodes of AF either. Once while driving on the M62 approaching Leeds, going to Wakefield I felt that I wanted to pass out. I indicated I wanted to go to the hard shoulder, then I opened all my windows to try to keep myself from passing out. After a time I drove off the motorway. I drove a few miles, realised that I had a mobile phone and called for an ambulance. On 2 other occasions during that 10 months I needed an ambulance to take me to hospital. I hated amiodarone. Flecainide sorted me out for 12 years when I was found to be in Persistent AF.

[Polly159 in reply to Thomas45]

Thanks, Thomas45. Your experience with Amiodarone sound awful. Hasn't affected me that way yet- bit also hasn't worked for me.

[Kaz747]

I was on Amiodarone for about two months (as well as Digoxin and Atenolol so quite a cocktail). The Amiodarone was a drug of last resort as my EP said we needed to try and give my heart a rest so it wouldn’t get damaged with extended fast rhythms. The drugs slowed my heart rate but didn’t eliminate the AF episodes which were happening daily. I had rashes on my skin, lung problems and a blood test showed a high level of a certain enzyme in my liver (7 times what it should have been) so the Amiodarone was stopped. Thankfully my last ablation seems to have done the trick and my last blood test showed my liver was back to normal. I’m now just on a small does of Atenolol plus my anticoagulant. I hope you get sorted and are feeling better soon.

[Polly159 in reply to Kaz747]

Thanks Kaz747. Glad your ablation worked - long may it continue.

[supergranny]

I stopped taking it because of the nasty side effects but then went back into AF but controlled no fastheart beats just irregular and quite frankly I would rather put up with the AF than take Amiodorone!!

[Polly159 in reply to supergranny]

Thanks, supergranny. Interesting, but also s pity you still have AF. Hope things improve for you.

[ublong]

Here in the US my cardiologist wants me to take Multaq (a very expensive drug). Plenty of side effects but not as many as Amiodarone.

Has anyone taken Multaq? Did it stop a fib and what where the side effects?

[barbly1 in reply to ublong]

I am on Flecainide which has worked great for me for this last year post-ablation and is needed for many ectopics. I haven't taken Multaq, but found this on Drugs.com, which says that it is to be used for people who have HAD afib in the past, but not now..... Maybe post this as a separate question so that it gets its own thread and other see it to respond. I am in the US, too. "Multaq (dronedarone) is a heart rhythm medicine that helps maintain normal heartbeats in certain people with life-threatening rhythm disorders of the atrium (the upper chambers of the heart that allow blood to flow into the heart). Multaq helps lower your risk of needing to be hospitalized for a heart rhythm disorder called atrial fibrillation.

Multaq is for people who have had this disorder in the past, but now have normal heart rhythm."

[ublong in reply to barbly1]

Thank you.

[Nugger]

First time I took it, gave me terrible lower back pain after only 3 days.

3 years later, tried it again & I was ok ?

Took it for 10 weeks until I was cardioverted & stopped taking it immediately after, contradictory to what the doctors want.

It did improve my QOL for them 10 weeks, you learn after a while to self medicate, as we’re all different.

My advice is to read & educate yourself, all the best

Frank

[Polly159 in reply to Nugger]

Thanks, Frank. You're right, we're all on our own very different journeys and need to adapt what's out there to suit our needs. Great to have a group like this, to find support and know what the possibilities for treatments etc are.

Take care

Polly

[Jes59]

I have been on Amiodarone for a year, gradually reducing the dosage. It was not given as a ‘last resort’ but more of a first drug to combat the AF (on beta blockers since heart attack in 2003). I have been lucky in that I have suffered no side effects though did have blood tests to keep an eye on this. Best thing is that the drug completely cured my AF. I had about four bouts of ectopics during the year, but lasted only a few hours. I stopped taking Amiodarone a month ago, but it stays in your body for some time so it’s only now that I have my fingers crossed that the AF does not come back. If it does flecainide has been ruled out due to one of my coronary arteries being only 20% patent so not sure what the next step will be if it comes back!

[Polly159 in reply to Jes59]

Thanks, Jes. Good that the amiodarone stopped your AFIB. When you say 'gradually reducing the dosage' is that the regime of 1 week @ 600mg, next week 400, from then on 200? That was the regime I followed so now in 200mg a day, but not stopping afib. Just wondered if you were on a higher dose than 200mg.

Take care

Polly

[Jes59 in reply to Polly159]

Hi Polly, I started on 200mg for about nine months then 100 and final month of 50mg. As someone else said, if your own symptoms are getting worse (though it takes a month for Amiodarone to start working) then you should go back to the doc’s. As I have learnt from this forum the treatment of AF is different for many people, I hope you find one that works for you.

[Polly159 in reply to Jes59]

Thanks, Jes - seeing GP tomorrow!

Take care Polly

[lms0006]

Declined to take it would rather be in permanent AF

[Jes59 in reply to lms0006]

I admire your fortitude, but I would try anything to be AF free. Most drugs have side effects though not often severe, but with regular blood tests to highlight any problems I was happy to try Amiodarone and for me at least it has worked, at least while I was taking it, time will tell if the AF comes back which I suspect it will judging by people’s experience on this forum it seems you usually end up with AF for life!

[realdon]

I was put on Amiodarone after two failed ablations and then going into persistent AF which left me breathless and unable to go up hills or stairs. The AF episodes stopped within days. I stopped taking it last December and have had no AF episodes since, but am well aware that they may be “in the post”.

I followed the EP advice, took the blood tests etc. The only side effects were initially swollen ankles and genitals, which went away (the swelling I mean) after a couple of weeks.

[Polly159 in reply to realdon]

Thanks, Realdon, all the info helps in making decisions. Have an appt with GP tomorrow, so we will see what she says.

Take care,

Polly

[Jes59 in reply to realdon]

Not sure if I’m not envious I didn’t get swollen genitals!😜👍

[johnMiosh]

I was given amiodarone at a dose of 200mg per day to stabilise me after my ablation.

I was very careful with the sun, but was on it throughout a hot summer and wasn't too sensitive for a hat and factor 50 to cope with. I had no other issues with any other organs, although some of my liver enzymes were elevated.

I checked the half life of Amiodarone when I was taking it. It is a difficult drug to expel from the body, only around 1.2% per day is removed. I am not a pharmacist, so my calculations may be a little out, but on the first day I would have had 200 mg in my system. The next day my body would have removed just over 2 mg, but having taken another pill, I I would have had 398 mg left . After a week, I would have built up to 1.4g, after a month 5.1g and at the end of my prescription after three months I would have built up to 11.4 g. I understood at the time that the toxic effects tend to occur when you get 30g into your system (I can't find a reference for this now).

Even after stopping taking it, it still takes a while to get out of your system. I calculated that it took another two months to get back to 5g and a total of eleven months to get down to 200mg. For those who experience serious chest, liver, kidney, thyroid or eye issues, the way to reduce the blood level urgently is by dilution with donor blood.

I was very nervous about being on amiodarone, but overall I was pleased by the effects I am sure it kept me in NSR directly after the ablation and the months of slow reduction probably also gave me some cover.

I am now on no medication and have been in NSR for two years.

[Polly159 in reply to johnMiosh]

That sounds great, John and very interesting info 're dosages of amiodarone.

Take care

Polly

[Hidden]

I take flecainide when I have an episode and they never last more than a few hours. It too is supposed to prevent episodes when taken regularly but it didn't work for me so I have gone back to taking it when/if episodes occur and hopefully, this will be less often as I put an end to the triggers! Good luck with finding what works for you- "we are all different!"

[Polly159 in reply to Hidden]

Absolutely, Sandi, it's great to have info 're others' experiences and to know that, at the end of the day, it's what works for you that counts. Still on the trail of finding that at the moment - but ever hopeful. I think, too, for me, one of the good 'side effects' of AFIB has been to eat more healthily, walk more and not overdo things at work (I don't have the energy anyway!), and appreciate every normal heartbeat! Now I wouldn't go as far as saying afib is a blessing in disguise....!!!!!!?????

Take care

Polly

[Hidden in reply to Polly159]

Don't want to put you off but my AF arrived after years of healthy eating and regular exercise and not being over weight or smoking etc etc but we are all different. Mine wasn't diagnosed until I was 73 so I'm in the bonus years already and after two years I seem to have found the triggers (rushing or slight stress and walking uphill which I had previously thought was doing my heart good as we were told that it was good to get your heart rate up) Good luck with your new regime and hope it proves successful for you. I'm hoping to get back to more regular meditation too- have you tried that?

[Polly159]

Thanks, Sandi, glad you've found the triggers. Yep, there's sometimes no rhyme or reason for AFIB, you just have too keep getting to know it better.

I pray and meditate regularly which I find helpful in so many ways.

Thanks again

Take care

Polly

[Hidden in reply to Polly159]

Sadly, I haven't found all the triggers but I've started on the magnesium taurate which someone here rated and not boasting that I've sorted it as that usually brings something on!

[drose977]

be sure to have your lungs checked every 3 mos. facebook.com/groups/stopami...

[Polly159 in reply to drose977]

Thanks, drose977. Strangely neither the cardiologist or GP mentioned checks. When I saw the GP earlier this week and mentioned side-effects, she simply said that I would know when there were side effects!!!!!!

It could be, of course, that neither medic (especially cardiologist) thinks I'll be on the amiodarone for as long as 3 months as she has referred me for an ablation.

Take care

Polly