I am reaching out again to you wonderful supportive people. I entered a message last night, but I guess I did it wrong because I dont see it.
I have been perscribed Amiodarone for a constant (I guess that is the correct word) arrythmia that is all over the place - it is irregular heart beat, afib, flutter and it has been going on for a while. I have been told it wont stop but that Amiodarone will stabalize the heart. I did a bit of research on this drug and I feel afraid of it.
I am supposed to take the lowest dose of 200 mgs 1 x daily. I also take appixaban. and have read there is a moderate interaction with amiodarone, I dont know what to expect and what this means.
Is there anyone that can share their experience with me or knows about this drug. I would appreciate hearing from anyone. Thanks again
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kitttycat
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Here in UK and Europe Amiodarone is known as a drug of last resort. Yes it is highly toxic, can cause photosensitivity of the skin, deposits in the eyes and lung difficulties not to mention damage to thyroid gland. It is , however, highly effective and often used short term to aid cardioverions or to help hold NSR post ablation for a short while.
Thanks Bob for getting back your comments are somewhat what I have read. I am thinking I wouldnt want to use this long term. I need to talk to the cardiologist again for sure. thanks again
I have just come off it . I was prescribed it in Spain when I was hospitalised a month or so ago with AFib + AVR and had to be cardiovert d with Amiodarone by IV. Horrid experience.
Anyway, I like you was horrified at what I read about it and really didn’t want to be on it . I was only on it 5 weeks and it made me feel pretty rotten. At first when I came out of hospital I thought the fatigue, weakness and tiredness was a post AFIB episode thing ( I have only ever had 3 bad attacks) but it continued the whole time I was taking it. Within 10-15 mins of taking the tablets every day I would get bad hand tremors which lasted for a good half an hour or more. I didn’t seem to be photo sensitive. I saw my consultant in the Uk on my return and he took me straight off it. I am now doing 4 weeks of getting it out of my system and I will them start with Flecainide.twice daily.
I know from a. Good friend that she thinks it was a wonderful drug - post heart surgery she got bad AFib and it stopped these attacks completely. BUT it has very high risks so best only be on it if it’s absolutely essential. Good luck
Thanks No doubt - I am sorry to hear you had to undergo such a horrible experience. My reaction is I dont think I like it , just hearing about it. Were you taking a low dose or much higher one? I have to investigate this more with the cardiologist. Thanks for sharing your story, appreciate it.
I have only been administered it once ...... only as an IV drip. Never ever been prescribed it as a regular tablet/pill.
The night (back in January 2010) my GP (my family doctor) had me admitted to hospital A & E (ER) I was diagnosed by the duty A & E Doctor as having AF with a HR clocking 156 bpm. ( I recall the way I felt it might as well have been 156 mph). During the treatment I remember this young woman Dr. saying to me I'm gonna give you two doses of this drip which will make you feel as if you are gonna die ..... you won't .... just sayin'. The purpose of the Amiodarone drip was to lower my heart rate, it took seemingly an eternity to get anywhere near it .... and yes ..... I certainly did feel as if I was gonna die, bloody awful. It did exactly that, but it was a very slow process but it did bring my HR very slowly down. I was later shunted off to the Cardiac Unit where I stayed for the next 5 days for observation and tests etc.
Apart from that one occasion, an IV drip, I've never had it administered as a medicine treatment option. Nor would I take it.
I just remember feeling so awful anyway that when they started the amiodarone drip I didn’t think it could get much worse . I was thankful that it worked all be it it is a nasty drug
Hi John OMG -what an experience. I dont think its a good drug, but I wonder what else is out there that restores the heart rhythm and keeps it that way. Thanks for sharing this. Appreciate it.
There was an upside to my experience, however, ..... on the morning of 6 January 2010 I woke up, got up and a short while later began to feel unwell - just like I was going down with 'flu. By late afternoon my BP had dropped to 76/50 ( from a normal of about 136/80). Phoned GP who saw me immediately checked a few things and sent me to A & E. So from starting to feel unwell I had seen my GP in around 9 hours and was in A & E and had a diagnosis some 12 hours later ( at the maximum) AND TREATMENT STARTED TOO. All thanks to that young lady duty doctor in A & E. I was kept in Cardiac Ward for a further 5 days. ⭐⭐⭐⭐⭐ Gold stars all round.
The speed of this diagnosis I firmly believe prevented my paroxysmal AF from getting a grip and thus making the choice of drug treatment the way to go. In discussions with my Cardiac consultant at the time I rejected any notion of ablation. I was put up for a Cardioversion but when I presented myself my heart chose that time to be back in NSR. No action taken.
Many, many months later I found food was a trigger for my brand of AF, so blending drugs with diet my AF came and I conquered. These days (soon to be 14 years later) I can't remember my last AF event ... maybe 18 months ago, but it could be as long as 4 years. As I say, all down to the fact that my diagnosis and start of treatment was started so quickly.
Given this speed of my treatment, when I read peeps comments on this forum about the way they first diagnosed and treated it reads like a series of horror stories.
Hi Kittycat, I came off it earlier this year after taking it for a little over two years. I also took 200mg daily and had no problems with it at all. Unfortunately, it didn't work for me, hence the reason for stopping it. According to an article I read a while ago, the nasty side effects are mostly associated with the much higher doses that used to be prescribed and are much less common at low doses. Low doses are considered to be up to 200mg daily. Hope that helps and that it works for you. Best wishes.
Hi, I find this very interesting that you were taking this for two years and it didnt work. Why did a doctor, cardiologist- they have you take it for so long when it was clear that there would be no change. What have you been given to take now? Does anything else work? Can you let me know thanks. and thanks for your wishes, that is nice of you.
I had had two unsuccessful cardioversions before starting the amiodarone. Although these worked initially, I was back in AF within four months. It's impossible to say how long I was in NSR because I'm totally asymptomatic when in AF. The reason for taking the amiodarone was that it would enhance the effectiveness of a third CV. The idea was to take it for a while, have the CV, continue with it for a while longer then run an EKG to see where things were.
With this all being done by the NHS, the process took just over two years.
My last EKG was done about four months after the CV and showed that I was back in AF. The decision was taken to come off the amiodarone as it clearly hadn't extended my time in NSR.
The cardiologist also decided that he didn't want to see me again so the only medical care I have is via my GP, who remains unapproachable and hasn't been in touch since the cardiologist dumped me.
The only medication I take for AF is 3.75 mg of bisoprolol daily and 5.00 mg of apixaban twice a day. Pretty much what I started on when first diagnosed. I don't take any other rhythm control drugs.
The main effect of bisoprolol is to stop your heart rate from rising too high but it also lowers blood pressure somewhat.To be honest, it's difficult to say if it's having the desired effect on me.
I have never had an increase in heart rate even when in AF and my diagnosis was made purely by chance. My normal resting heart rate is 55-60 and it stays the same when in AF. These days it's probably all the time.
I was prescribed bisoprolol and warfarrin initially because they were "the standard treatment " and later changed to apixaban. I don't know if I need to take it as I have never experienced fast AF.
My arrhythmia nurses say it's a wonderful drug with side effects for some; research shows most side effects came on olden days high doses; my cardiologist loves it. Batting for the other side is my EP who wants me off of it and to give me a fourth ablation (if I had listened to him it would have been fourth in 26 months!). So far so good (six months) except the eye halo round bright lights. Xx
Hello Jajarunner thanks so much for this information. Will you be staying on this indefinitely or does your cardiologist transfer you to another medicine at some time later. Can you let me know- thanks again for your help
Amiodarone is a powerful drug and many people have taken it for some time with dramatic results. BUT the main problem I found was that it is contraindicated with so many other things which are routinely prescribed, that your doctor will be giving you things which are listed as seriously incompatible. When I discovered this I asked the pharmacist who said, 'Ask your doctor', who in turn sheepishly with no apology changed it for something else. You need to be super aware about what other things you are taking and eating with this drug.
The photosensitivity was disabling for anybody who has an outdoor life and who likes to sit in the sunshine for even half an hour. I found I would go scarlet after just 30 minutes and had to avoid the light.
Worse than that was the side effects which caused everything from digestive disorders to a frightening episode in the middle of the night when I was gasping for breath so badly I had to call the emergency services. But of course, nobody would say that was an effect of the Amiodarone, though I have never had it before or since I gave up the drug.
The final thing is that it has a very long half life, something like 80 or 90 days, from memory. So it goes on acting on your body where it is absorbed into all your organs, for 80 days after you stop taking it. This makes it very difficult to change to other drugs which affect the heart as you will suffer from the effects which are contraindicated, even though you might have stopped taking Amiodarone some weeks before.
I am no doctor or health expert, but it certainly pays to be aware of all these facts and the mortality statistics and discuss them with your doctor. For me it was the worst thing I have ever taken. But I am fortunate that a standard beta blocker works satisfactorily for me.
I was suffering from the immediate after effects of a stroke at the time I took it, so I cannot say with certainty that all the unpleasant things I suffered from were down to Amiodarone, but I still believe that was the case.
Hi Oscar, thanks for getting back to me. This is very important information. Were you taking a low dose of Amiodarone? I am glad I am finding out these things and my intention is to have a a conversation witht the cardiologist. and yes from what I have heard it sounds like this was the case .
I think I was taking 800 mg of Amiodarone (it was three years ago) but that was enough to cause me a lot of negative reactions. I am sure the best thing you can do is to have a full conversation with your cardiologist and or him to explain all the different options as well as all the dangers. It used to be the case that it was a drug of last resort and was initially largely discontinued until its value was rediscovered and more precautions were taken in its prescribing and medical tests that accompany it. But there are many other choices of far less potent drugs for most of us, and your cardiologist should explain why he thinks amiodarone will benefit you more than the other, safer options.
Hello, I can understand your concern. I took it for about 9 months, like you felt very uneasy about possible side effects. My GP was reluctant to prescribe until further checking with Consultant, also my Optician could not believe I had been given it. When it started to have some effect on my kidney function readings I gradually took myself off it & discussed it with my Consultant, he was not totally happy but said to try. So far I just take Bisoprolol & Apixaban plus a Statin. I am not suggesting you stop it without discussion with a medical professional of course. Sending my best wishes
Hi Colourblue, thanks for getting back to me. After you started to gradually reduce it did the afib start coming back then. Does the bisoprolol now keep it in check or you just dont know you have it. I have extreme concern about the whole thing. thanks for your wishes. I also wish you the best. This all seems never ending doesnt it.
I’ve been on Amiodarone 200mg for 15 weeks post hybrid minimaze . Initially I got a metallic taste in my mouth and halos round my eyes. I’ve suffered no ill effects apart from photosensitive but none the less will be please to stop it.
Hello 4 thanks for getting back, all the information I am gathering on this drug is literally making my heart flip. I appreciate you sharing your story. Good luck
I was put on it in hospital as I could not tolerate any of the other AF drugs. I hated the thought of it due to the list of potential side effects. After 5 days I experienced dreadful nausea and could not even keep a glass of water down. I was taken off it immediately. I must admit that I was quite relieved that I was unable to tolerate it.
Hi Norfolk thanks for getting back. Sorry to hear of your terrible experience - what do you do now to control or help your afib. I am learning so much from everyone. This forum is such a helpful group to turn to. thanks again
Because I couldn't tolerate any of the AF drugs, I was put on the list for an urgent ablation and only had to wait 10 weeks for it. That was last October and it was successful in stopping the AF but I still have lots of ectopics which I find very debilitating. Good luck.
I can see that the replies probably won’t alleviate your fears about amioderone and I’m afraid I don’t have any experience of this drug, only what I’ve read on here. I too would be wary, but it does seem highly effective, at the right dose and for the lowest possible time.
I’ve been looking back on your last few posts and see the issues that you’ve been having for the past few weeks.
Please can I ask, are you seeing a cardiologist, have they offered you any alternative to get you back into rhythm apart from amioderone? Do they have a long term plan for you? I notice you didn’t know if what you were experiencing was Afib the other week, so presumably a doctor of some sort has confirmed that now, but it wasn’t clear who has actually prescribed amioderone.
Have they checked your heart structure? Have they offered you a cardioversion - which can often get you back into sinus rhythm?
I notice you cannot take Metaprolol due to your blood pressure - is it very low? Have they offered you anything else to lower your HR which won’t affect your BP? Or a rate control drug like fleconaide ( which can only be given if your heart structure is fine) ? I had low/normal blood pressure before I took Bisoprolol and I’m on the lowest dose, it’s only lowered my BP very slightly, but it has lowered my HR.
Hello Teresa, I am seeing a cardiologist, and this is a new one referred to by my doctor (she wanted me to see another one) based on a recommendation I gave her from someone, and I have seen this cardiologist once . The other cardiologist didnt tell me really very much about afib, irreg. hb, -( he said my blood pressure going low was not caused by my heart which is why my doctor wanted me to see another one). I was given the metaprolol (by the first one) and said to take two x 1/2 day to manage if my heart went up to 135 again, which it never does. It will go slightly above 100 and only for minutes at a time, but I feel it. I have normal range blood pressure but it tends to go lower at times when I have afib, ireg.hb, and I cant take the metaporolo because of this, because the metaprolol lowers it again. I have started to take 1/5 of one sometimes but make sure everything is in the right place first. The new cardiologist confirmed my heart was all over the place with afib, ir hb flutter and it wasnt going to go back go normal. It is the 90's a lot (more times than not) since this all started. Normal was always in the 60's. He said he had a lot of success with the amioderone. This is how this all came up. No one has offered me an alternative.
All I can offer is the fact that your home monitor for BP when in afib, should not be relied upon really as it can be all over the place.
It sounds like you are in ‘persistent’ afib, from what you’ve described, Has your cardiologist told you what the plans are for you taking it and how long for? As you can see, it’s normally prescribed short term and perhaps in lead up to a cardio version or ablation? Or taken shortly after, to keep the heart in rhythm. Some are on it long term though as you can also see.
Firstly, it's a very well tested and still highly used drug. I was about to be given it, but in the end my ablation made it unnecessary. The study Iink to below should assuage your natural fears.
It's not a drug that is prescribed first-line or lightly, until others have been shown not to work, but, apart from its known toxicity in some users (usually, I gather at higher doses and for longer term), it's said to be an excellent drug with none of the potentially dangerous pro-arrhythmic effects and lengthening of the QT interval that other anti-arrhythmic drugs such as flecainide can, rarely, create.
Hi Steve thanks for the information. I noted your comment that it is not a drug to be prescribed until othrs have been shown not to work. I will take a look at the link. thanks again. regards
Hello. I appreciate your concerns as amioderone is, as you have said, a drug which can potentially have some adverse effects. Having been on this site for a few years now, some people have fallen foul of it but for others , like me, it was a blessing.I was on it for just over 6yrs with 3monthly blood tests, bi yearly chest xrays and yearly eco tests.
My cardiologist and ep were very happy for me to be on it and both are quite prominent names in the world of cardiology in London.
I was super sensitive to sun light and had to take great care in the sun but for me it was the only side effect.
Unfortunately it stopped being effective in holding my AF and I came off of it 3yrs ago now.
It is definitely a drug to be aware of but just thought I would let you have a more positive view of it, my own experience, as there are so many negative ones.
Hi Nannysue thank you so much for your story. I appreciate it. What have you been prescribed now to keep af away. This is all so complex. thank you again and for your wishes, I wish you well also.
Hi Kitty kat.I was prescribed Amiodarone as a prelude to an upcoming ablation with the view that the Amiodarone would help my heart maintain NSR post ablation. I was given a higher dose for seven days reducing to 200mg daily thereafter.
I had been in persistent AF for a year and had a partial ablation in Jan 23.
On the seventh day of taking Amiodarone my heart reverted to NSR and has held NSR for about three weeks now.
Obviously everyone's experience is different but I have not suffered any ill effects and am loving being back in NSR.
I hope Amiodarone is as beneficial to you as it has been for me.
Hi Declin thanks for getting back. Are you still taking Amiodarone 200 mgs? If so, will they be changing this after a while to a lower dose or another type of medicine.? I am glad your heart is back in NSR, yes it must be great. Thanks for your encouragement and wishes. The best to you.
Hi Kitty catI was put on amioderone back in 2003 after a second CV. I'm not a sun worshipper but am very much an outdoor person and had to be very careful in sunshine as I was so sensitive. After 6 months I lost a lot of weight in a very short period of time, Thyroid problem so they switched me to flecanide which I stayed on for 15 years. Personally I won't touch amioderone again but I'm sure it works for some.
Hi Rosebank thanks for sharing this information. Thyroid is a concern for me, I need to look into this- the only thing I was told is that it is affected -but not much. But dont know what that really meant. I actually didnt think of all this at the time I met the cardiologist. Everything happened so fast. What medication do you take now? thanks. again.
I started having problems again in 2018 and have had 2 ablation, the last one 2 months ago for AF! Hopefully I'm now fixed🤞and am on bisoprolol, candesarten and edoxaban. I have a 3 month review with the Arrhythmia nurse when I'm hoping to come off the bisoprolol and candesarten as my BP is always in the 90's over 50's and my heart rate in the low 50's or high 40's so I feel as though I'm running a bit slow🙂 edoxaban? I assume I will be on it for life.
Hi Peter thanks for your note and the encouragement. The picture I am getting is that everyone has to go off of this after a while. - and on to another drug perhaps. thanks
I have been on amiodarone and Apixaban for over two and a half years and have experienced no interaction, nor has any doctor or pharmacist suggested that there could be. As others have said, the serious effects tend to be related to doses higher than are usually prescribed nowadays in tablet form. I am on 100mg daily and have regular six-monthly blood tests to check for any problems but have had none. For me, it has been a wonder drug and since the initial front-loading couple of weeks when I felt a bit weird, it has restored my quality of life completely. I just pray it goes on working for me! I’ve read here of people who’ve been on it for 20 odd years into their 80s or 90s and have had no problems. You do have to be careful with exposure to the sun, but I’ve found if I wear factor 50 and a sun hat I have no problems. The other thing I would say is that you are very likely to get corneal deposits (as I have) but my consultant ophthalmologist (who I see for a different reason) says they are of no consequence at all. My optician agrees with him. So to be honest, I have only good things to say about amiodarone from my experience!
Hello ZVisigoth thank you for getting back to me and for your story - It has made me feel a bit better. I would hope that if I took it they would reduce it to 100 mg daily, because I am fearful of it. thanks for the information on the eyes, really important. I am so happy everything has worked out for you.. thanks again
Amiodarone was a menace for me. Prescribed as last resort. Lowered my HR to 38, requiring a ER visit/admission and tripled my normal thyroid panel in 3 months. Went off in March and panel back to normal! Beware!
I took amiodarone for my AFIB about 4 weeks. It was awful. I had a headache every day and my hair was falling out by the hands full. And, it didn’t help with my AFIB. There are a whole list of other side effects. I would NEVER advise anyone to take it.
Hi Cookie thanks for sharing your story, I appreciate it. We never know what is in store do we. What were you prescribed instead of this. Thanks again,
I took amiodarone to ease my extremely symptomatic afib. I had it for several months before my ablation and about six months afterwards. It kept me sane and stable. I had to be careful when outside as i burned with sun creams and protective clothing, but I had no other side effects at all. If necessary I would take it again.
Hi Flossie for letting me know this. Sorry for taking so long to get back, but I have problems in my mind about it, Its encouraing to hear a good story. Most seem to have had issues with it. Thanks again, best wishes
Been on amiodarone for five years and I hate it but EP refuses to take me off of it. Right hand fingers are a little numb, dropping things all the time, hands shake like I'm scared to death, can't sleep nights I want off of this stuff. I was on "dofetilide" for twenty five years and just for a few break through's everything was good until while in the Hospital a Dr. one day told me I was now on amiodarone without prior consent or knowledge. Although no serious problems yet I feel like I'm under "The Sword of Damacles" . I, like Bob said was told it was the last resort; or else what, I was never told would I die or what, EP just says it wouldn't be good if I stopped taking it. Don't mean to frighten you but you need to know the truth. Please see if there is an alternate medication you can be put on! At least you're being told up front rather than after the fact. Good luck on your decision and outcome.
Hi Kocoach these are all the things I am afraid of. Truth means a lot doesnt it. If you understand something if is half the battle as they say. I am going to look into it. thanks again-
I hope you will find something else that can help you and that you will feel better - things dont sound so good. take care of yourself.
Hello again, you asked if my Atrial Fibrillation came back when I came off the Amiodarone. With me it seems to be permanently there, some days I notice it more than others. The main thing with Bisaprolol for me is the tiredness especially in the morning. Mentally though I do feel better since stopping Amiodarone, it was worrying me too much. It is an effective drug but preferably in the short term. Best wishes.
Youre more than welcome, for some ( and by the sounds of it you and definitely me) it can be quite debilitating, while for others they hardly notice it. I was on amioderone and Riveroxiban and had a gastric bleed which even through lots of tests, they couldnt pinpoint what had caused it but possibly a little pocket which bled more than someone not on a "blood thinner" They moved me on to apixaban x2 split morning and night as its easier to stop the after life effect.
Unfortunately after the amioderone stopped being effective, I tried various meds but either they didnt control the AF enough or they made me feel worse.
Ive now had the pace and ablate procedure which leavrs me pacemaker dependent and is considered last resort treatment. However, I havent felt this good for years and feel like i have my life back again.
Its a big step and decision and it doesnt sound as though youve exploted all of your options yet?
I will say that i wouldnt gamble and not take the apixaban as it helps to cut your risk of stroke.
I hope you get some answers. Make sure that you get yourself a good ep and good luck.
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