WHETHER TO COME OFF AMIODARONE - DIFF... - Atrial Fibrillati...

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WHETHER TO COME OFF AMIODARONE - DIFFICULT DECISION.

muffin31 profile image
19 Replies

My husband suffered a heart attack 12 months ago with mild to moderate damage. Stents were put in which went well, but 4 hours later he went into fast AF. Amiodarone was given intravenously which stopped the AF at first but during the night he kept switching between sinus rhythm and AF. He was then started on amiodarone tablets and discharged 24 hours later after being told he had paroxysmal AF possibly as a result of the stent placement. Since then he has been taking 200mg of amiodarone a day plus 1.25mg bisoprolol and eliquis blood thinners. He had thyroid, liver and kidney tests after 6 months which were OK. Since then he has had follow up appointment with cardiologist who explained the possible side effects of amiodarone and said there was "no easy answer" about whether to come off them or not, presumably meaning that to do so would also carry a risk. My husband said he would think about it. He has had no further fast AF. We are due to see GP next week for further 6 month checks. Cardiologist has told him my husband would make a decision about coming off the amiodarone and I have had many sleepless nights thinking about it. Having been told there is "no easy answer" I am terrified we will make the wrong decision. I do remember the cardiologist saying there is a small chance of serious lung damage with the amiodarone but do not know what the percentage is. We know AF sometimes occurs straight after stent placement and sometimes resolves itself but we have no way of knowing if this would be the case or if my husband could go into fast AF again which could be dangerous. He is 78 years old and ablation etc is not an option. He is reasonably active at the moment and we are still able to enjoy most things. I realise all cases are different but I wonder if anyone has had a similar experience and had to make this difficult decision. Sorry for such a long post but worry seems to build when there is such a long wait to see a cardiologist again and although our gp is good he is not a heart specialist.

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19 Replies
CDreamer profile image
CDreamer

Hi - I can so relate to your dilemma as my husband - 85 - has been on Amiodarone since last February with great results. He has blood monitoring much more regularly though - about 8-12 weeks.

My husband was clear re: CV disease but was in persistent fast AF and had been for about 9 months, with aortic stenosis and basically in HF. He responded really well to daily Amiodarone after failed cardioversions and unresponsive to other drugs.

Affects of Amiodarone:- lung damage, damage to the thyroid, increased risk of skin cancer so absolute need to keep out of any sunlight - my husband has had numerous basal cell lesions removed from his face and neck and skin thinning. I am sure there are plenty of other affects but those are the most serious. Without doubt Amiodarone is the most toxic drug you can take - but without it life wasn’t worth living for my husband.

I have to say that it has improved his QOL over the last 6 months beyond measure and he has maintained NSR since, however, it is a very toxic drug and if he can, I would prefer he come off now - even if it was just to see if he can maintain NSR. As Amiodarone half life is so long, we know the affects will continue for several months, we understand that we won’t really know for several months whether or not this is going to be the ‘right’ thing to do.

You cannot worry about these things and you certainly don’t lose sleep over these decisions because your own health will suffer and you won’t ever know if it is ‘right’ or ‘wrong’ thing to do so I never think in those terms - I look at how things are now and ask the question would you be better with or without the treatment right now? Is it a greater risk to stay on and continue monitoring and hope he won’t suffer the affects or better to come off and see what happens?

And whatever you do, you won’t know about the alternative decision because unfortunately we aren’t blessed with hindsight or a rewind button!

I am hoping for him to come off the Amiodarone and then if the AF returns and QOL decreases again - we have a rethink.

My only comment is I think this sort of decision is often way beyond the average GP level of competence - unless they have specialist cardiac experience and training - so my husband is writing to the specialist - enclosing all the data he has - weekly Kardia traces, BP recordings, blood results etc and asking for guidance for GP.

Hope some of that helps - Best wishes CD.

PS - I don’t believe that fast AF is dangerous in itself but if uncontrolled for longer periods of time may lead to other conditions such as Heart Failure but it is not an immediate life threatening emergency if you go into fast AF - been in it myself too often for the last 12 years!

muffin31 profile image
muffin31 in reply to CDreamer

Many thanks for your helpful and supportive advice. It gives us plenty to think about. We will be considering everything before our gp visit and may request a private appointment with the cardiologist. I do hope things go well for your husband and for yourself.

Best wishes.

wilsond profile image
wilsond

Hello! It's always difficult when we are given a choice,especially in these circumstances. I often draw up a For and Against list,with as much info as I can gather.

We worry about long term effects of powerful drugs but then if they are working ,it's tempting to think ' if it's not broke don't fix it!'

Is it possible to contact your husband's cardiologist via his/ her secretary and ask for a more defined answer as to why it's not an easy question to answer in regard to stopping/ continuing with amiadarohe.

Why is ablation not an option by the way? He's not ancient!!

Wishing you both the best!

muffin31 profile image
muffin31 in reply to wilsond

Many thanks for your helpful reply. You are right it's so tempting to carry on as at present when things are going well but there again the reports of effects when taken long term are frightening. We are thinking of trying to get a private appointment with the cardiologist when we see the gp next week but may well phone his secretary as you suggest.

Best wishes.

BobD profile image
BobDVolunteer

Whilst I understand your concern I do wonder what might happen if he stopped. OK AF may return but it might not . Beta blockers such as bisoprolol can control rate if it did after all and 1.25 mg is just about the lowest dose possible .

There is no doubt that amiodarone is a nasty drug, in fact one doctor famously quoted "Amiodarone doesn't have side effects it has effects!"

Nothing is without risk as I'm sure you know and doing nothing can be risky.

I dont think fast AF is that risky to be honest if control is available. Unpleasant yes! Many people have events with very hight heart rates and just increasing bisoprolol may well be enough to control it.

You do need to consider tha risk /reward equation here and make a choice one way or the other or else you will end up chasing your nerves into oblivion! Worry will solve nothing.

muffin31 profile image
muffin31 in reply to BobD

Many thanks for your reply and the supportive advice. Will bear in mind when we see the GP next week.

Best wishes.

Hi muffin, I’m not able to add much as this is way outside my sphere of knowledge but I wonder if it’s possible to see your cardiologist privately rather than wait for a NHS appointment. Provided no tests are required such as an echocardiogram, an appointment generally costs £200 to £300 and with Christmas looming, maybe the family could chip in for a gift wrapped appointment.....just a thought, best wishes......

muffin31 profile image
muffin31 in reply to

Thank you for taking the time to reply. We may well request a private appointment when we see the GP next week. There were so many questions which didn't occur to us when we last saw the cardiologist.

Best wishes.

Barb1 profile image
Barb1

Can I ask why is an ablation not an option? If he came off and went into AF maybe this would be an option? If it was me with such a toxic drug I would stop taking it and see what happened. If I then had to go back onto it, at least I would be making an informed choice.

in reply to Barb1

I agree with Barb, if are saying an ablation is not an option due to age then maybe you should reconsider. There are a number of folk in their late 70’s early 80’s who have had an ablation. Be guided by your EP as they are unlikely to proceed if they think the risk is too great.....

muffin31 profile image
muffin31 in reply to Barb1

Thank you for your reply. Not sure why ablation is not an option but may be because of damage following the heart attack. This is something we will ask at next appointment.

Best wishes.

in reply to muffin31

I think it would be best to ask an EP about this rather than a cardiologist

EricW profile image
EricW

This dilemma I faced 3 years ago after taking amiodarone for four years. I was already taking levothyroxine for the damage to my thyroid and a recent X-ray indicated early damage to my lungs. I had no compunction about telling my GP that I had had enough. I would rather have the AF than slowly deteriorate on the drug. She agreed.

Maybe I was lucky. I had, had a pacemaker fitted ten years earlier and although I am now in permanent AF I am not aware of it. My AV node has now given up and my heart is fully controlled by the pacemaker. My cardiologist explains that I have had a ‘spontaneous’ AV node ablation!

Which brings me to my point. I understand that a surgical ablation of this kind is a much simpler procedure than other forms. It might be worth asking about it on your next consultation.

I should add that I am now 85 And lead a pretty active life still.

muffin31 profile image
muffin31 in reply to EricW

Many thanks for your reply and the information. Will bear this in mind at next consultation. best wishes.

Maril1 profile image
Maril1

I can only speak through my experiences. I was put on amiodarone as the drug of last resort ( they had tried everything else) for aflutter back in 2007/8 . Knowing what I know now that is the drugs don't work for flutter I wouldn't have touched it with a barge pole. Fortunately I had an ablation for the flutter in 2008 but have since suffered proxy Afib lasting up to 8hrs with a HR of 150/170 but the worst thing about it is how varies from one minute to the next from 80 up to 170 it's like a rollercoaster ride but because this has been going on for well over decade now I treat it like others treat a headache but find by doing something takes my mind of it ,like going for a walk ( this normally converts me back to normal within the hour) or playing the piano where as the flutter was a constant 130/ 150 and didn't bother me .

If I can throw in my tuppence worth . First of all don't worry as it will definitely make it worse ,Afib can be quite quirky the more you think about it the more you seem to get and the longer it lasts and definitely after any trauma especially a heart attack. I would say in nearly all cases there is no harm in trying as amiodarone is so toxic he would not be on it if he had any other serious condition.

muffin31 profile image
muffin31 in reply to Maril1

Very many thanks for your helpful and supportive advice. Will give us plenty to think about before we visit the gp next week. We would love to stop the amiodarone and may try to arrange a private appointment with the cardiologist.

Best wishes.

Jes59 profile image
Jes59

I was on Amiodarone for a year, starting at 200mg then 100mg after 6 months, then 50mg for final two months. This helped with my fear of the side effects (of which I had no problems). I also think this method of finishing the drug is probably the best way rather than going from 200mg to nothing. The body does not fully expel the drug for at least a month, I am nearly 2 months post Amiodarone with no AF, but a couple of episodes of ectopics, one of which was during the England v New Zealand game!

During my early days of AF I saw no less than 4 different consultants, with one stopping my Bisoprolol and the next telling me off for stopping it!

My point being that all the treatments work differently for people( as we see via this forum) and even the Doctors are not in agreement on what treatment to give so get yourself informed as much as possible and ask your doctor questions👍

debdec profile image
debdec

My 87-year-old father has lots of heart issues -he a stent put in about 20 years ago. Diagnosed with afib about two years ago and at that time was put on amiodarone. (And a year later had a pacemaker put in ). A year later he had Congestive heart failure. He recently went to the lung doctor and based on his CT scan from two years prior(coinciding with when he went on amiodarone) his lungs are significantly worse in terms of toxicity -from the amiodarone so they believe. His cardiologist immediately took him off the amiodarone. It's only been 2 weeks so not sure what'll happen However my dad is currently in the hospital now with congestive heart failure issues...Not sure if that's helpful or not but of luck

MRockwell profile image
MRockwell

Yes you should be very aware of the side effects of amiodarone it can interact with other drugs such as simvastatin, it caused me acute renal failure after a loading dose in hospital . As it is an iodine-containing compound it accumulate in several organs including the lungs. I was taking levothyroxine should never have been put on amiodarone. It has a black box warning only used if you have a life-threatening arrhythmia. My case was not life threatening I have a ICD/pacemaker. I am 81 Sorry to say it is not a small chance of lung damage it is a well know fact it may mimic pulmonary infection, organizing pneumonia and can present gradually. You are quite right your GP is not a heart specialist. Maybe he can refer you to another cardiologist it pays to get a second opinion, I did.

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