Breathless since taking Amiodarone

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I am unsure of my mother’s diagnosis (she will not ask her doctors!) but she was a very fit 85-year-old who just prior to having a pacemaker fitted, in January, was able to walk two miles a day and dig her garden. I believe she may have ventricular arrhythmia as well as atrial fibrillation, but I am unsure. Her pulse was very slow and irregular prior to the pacemaker and now it’s a steady 61 beats a minute.

She has been on Amiodarone (and warfarin) since January. She soon felt unwell, with various side-effects, including swollen ankles and tremors. She also burns very easily and has to avoid sunlight. The most worrying symptom, three weeks after starting the drug, has been shortness of breath. Her GP believes she has fibrosis. Her cardiologist has said he will leave a decision up to the GP as to whether she should discontinue the drug. The GP, understandably, says the decision is up to the cardiologist. Also, she made an error when taking the loading dose in the initial two weeks and when I checked she had taken 14 pills instead of 37. She has spoken to her GP and the cardiologist, neither knows whether this will matter!

My mum is too frightened to stop the drug, even though she is unwell and breathless. Can anyone advise me please, I am so very worried. My mum was one of the fittest people I knew before being prescribed this drug.

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    If you feel that a symptom is due to a side effect of a medicine that you have taken then you may wish to report it to the Medicines and Healthcare products Regulatory Agency (MHRA) via their yellow card scheme -

    http://yellowcard.mhra.gov.uk

    Patient Admin Team

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  • Posted

    A friend of mine who usually adheres to doctors prescriptions and was put on Amiodarone for life. He had such terrible side effects that he stopped taking. About seventeen years (he is now 80 )after his heart and pacemaker seem not to have been harmed by stopping it.
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  • Posted

    Guest, thank you for the link. Sorry for late response.

    Derek, it's good to hear about your friend, thta eh stopped it in time and is fine. I just wish my mother had stopped the drug.

    After several months of wheezing and deteriorating my mum still persisted, but what shocked me was that doctors still did nothing! Eventually a lung specialist took her off amiodarone as soon as he saw her. He apologized and said the drug had done irreversible lung damage.

    I believe it causes pulmonary fibrosis in a small percentage of people, but it's a high enough amount for doctors to be fully aware and they should be looking out for certain side-effects. It beggars belief that a patient can present herself to doctors with breathing problems, which only occurred after taking the drug, and still be ignored.

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  • Posted

    I was on it after aortic valve replacement in may 2012 until after cardioversion in September 2012.

    The surgeon said that I could stop it after six months but the cardiologist disagreed. I took the surgeons advice as it was giving me several problems and unsteady gait.

    I was put on it again after going into AF after a hospital procedure. I had cardioversion on March 21st.

    I queried Beta Blocker and Amiodarone as my heart rate is usually low anyway and after procedure they said that I was in sinus bradycardia. They then said to stop the beta blocker. However my heart rate has mostly been between 36 and 43.

    I stopped Amiodarone on Sunday after reading:

    It is contraindicated in individuals with sinus nodal bradycardia who do not have a pacemaker.

    I'll wait a few days to see what my heart rate does before seeing my doctor.

    If you Google 'the history of Amiodarone' it is a frightening story.

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  • Posted

    This is a brief extract from a site called, dailymed on Amiodarone.

    Indications and Usage

    Because of its life-threatening side effects and the substantial management difficulties associated with its use (see “WARNINGS”below), amiodarone HCl is indicated only for the treatment of the following documented, life-threatening recurrent ventricular arrhythmias when these have not responded to documented adequate doses of other available antiarrhythmics or when alternative agents could not be tolerated.

    1. Recurrent ventricular fibrillation.

    2. Recurrent hemodynamically unstable ventricular tachycardia.

    As is the case for other antiarrhythmic agents, there is no evidence from controlled trials that the use of amiodarone favorably affects survival.

    Amiodarone should be used only by physicians familiar with and with access to (directly or through referral) the use of all available modalities for treating recurrent life-threatening ventricular arrhythmias, and who have access to appropriate monitoring facilities, including in-hospital and ambulatory continuous electrocardiographic monitoring and electrophysiologic techniques. Because of the life-threatening nature of the arrhythmias treated, potential interactions with prior therapy, and potential exacerbation of the arrhythmia, initiation of therapy with amiodarone should be carried out in the hospital.

    Contraindications

    Amiodarone HCl is contraindicated in severe sinus-node dysfunction, causing marked sinus bradycardia; second- or third-degree atrioventricular block; and when episodes of bradycardia have caused syncope (except when used in conjunction with a pacemaker).

    Amiodarone HCl is contraindicated in patients with a known hypersensitivity to the drug or to any of its components, including iodine.

    Warnings

    Amiodarone HCl is intended for use only in patients with the indicated lifethreatening arrhythmias because its use is accompanied by substantial toxicity.

    Amiodarone has several potentially fatal toxicities, the most important of which is pulmonary toxicity (hypersensitivity pneumonitis or interstitial/alveolar pneumonitis) that has resulted in clinically manifest disease at rates as high as 10 to 17% in some series of patients with ventricular arrhythmias given doses around 400 mg/day, and as abnormal diffusion capacity without symptoms in a much higher percentage of patients. Pulmonary toxicity has been fatal about 10% of the time. Liver injury is common with amiodarone, but is usually mild and evidenced only by abnormal liver enzymes. Overt liver disease can occur, however, and has been fatal in a few cases. Like other antiarrhythmics, amiodarone can exacerbate the arrhythmia, e.g., by making the arrhythmia less well tolerated or more difficult to reverse. This has occurred in 2 to 5% of patients in various series, and significant heart block or sinus bradycardia has been seen in 2 to 5%. All of these events should be manageable in the proper clinical setting in most cases. Although the frequency of such proarrhythmic events does not appear greater with amiodarone than with many other agents used in this population, the effects are prolonged when they occur.

    Even in patients at high risk of arrhythmic death, in whom the toxicity of amiodarone is an acceptable risk, amiodarone poses major management problems that could be life-threatening in a population at risk of sudden death, so that every effort should be made to utilize alternative agents first.

    The difficulty of using amiodarone effectively and safely itself poses a significant risk to patients. Patients with the indicated arrhythmias must be hospitalized while the loading dose of amiodarone is given, and a response generally requires at least one week, usually two or more. Because absorption and elimination are variable, maintenance-dose selection is difficult, and it is not unusual to require dosage decrease or discontinuation of treatment. In a retrospective survey of 192 patients with ventricular tachyarrhythmias, 84 required dose reduction and 18 required at least temporary discontinuation because of adverse effects, and several series have reported 15 to 20% overall frequencies of discontinuation due to adverse reactions. The time at which a previously controlled life-threatening arrhythmia will recur after discontinuation or dose adjustment is unpredictable, ranging from weeks to months. The patient is obviously at great risk during this time and may need prolonged hospitalization. Attempts to substitute other antiarrhythmic agents when amiodarone must be stopped will be made difficult by the gradually, but unpredictably, changing amiodarone body burden. A similar problem exists when amiodarone is not effective; it still poses the risk of an interaction with whatever subsequent treatment is tried.

    Mortality

    In the National Heart, Lung and Blood Institute’s Cardiac Arrhythmia Suppression Trial (CAST), a long-term, multi-centered, randomized, double-blind study in patients with asymptomatic non-life-threatening ventricular arrhythmias who had had myocardial infarctions more than six days but less than two years previously, an excessive mortality or non-fatal cardiac arrest rate was seen in patients treated with encainide or flecainide (56/730) compared with that seen in patients assigned to matched placebo-treated groups (22/725). The average duration of treatment with encainide or flecainide in this study was ten months.

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    • Posted

      My husband was put on Amiodarone following diagnosis of atrial fibrillation. The problem with this drug is that it simulates thryoxine in the body and in my husbands totally supressed his thyroid function.  As the comment above sayd in the US patients are hosptailised for the initial dosages and of course they have thyroid funciton tests carried out before they are given the drug.  My husband had no thyroid function tests before prescription but he became worse and worse and eventually he went back to his NHS Gp who immediately sent him for blood tests.   His tests showed no thyroid function and he was immediately treated with thryroxine.  The improvement has been steady but positive and after about 12 months of withdrawal from Amiodarone and about 3 months of treatment with thyroxine it appears that his own thyroid is recovering. He is now going through a gradual reduction of thyroxine by mouth and it is possible that he will be able eventually not need prescription.
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    • Posted

      This sort of conversation will go on forever as the drug is given to all and sundry when diagnosed with AF. Some reports say it should only to be prescribed as a last resort for life threatening AF. BNF the doctors prescribing manual says:

       "Intravenous amiodarone, or alternatively flecainide, can be used in non-life-threatening cases when electrical cardioversion is delayed"

      Knowing that I saw the cardiologist within two days hoping for cardioversion right away to avoid warfarin and amiodarone. The NHS however does not not work like that and cardioversion like everything else has a waiting time.

      There were several reasons why I should not have been prescribed it when going into AF after heart valve surgery in 2012 and even more reasons this year when again in AF.

      As I have said elsewhere I was blackmailed into taking it again by a Junior Registrar who said , Of course you won't want to take amiodarone again so you you cannot have another cardioversion' 

      I never had any blood tests during the times I was taking it.

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  • Posted

    Derek, it is shocking and beyond belief that this drug is often used as a first choice, and in two people I know (a cousin and my mother) it was prescribed when the arrhythmia was not life threatening, before any other drug was tried.

    But for on-line research on my part, my mother would have died in 2010. There is a website where people have written, warning others of this drug's dire effects in some people (and it's not as though the percentage is that tiny).

    Most people trust their doctors and don't question what's prescribed. The Internet has opened up a whole new world of knowledge for us and undoubtedly is saving lives. When I told a friend, back in 2010, my fears for my mother's health and what I had read on-line, she said, "A little knowledge is a dangerous thing." Of course that can be true, but it can also be a lifesaver!

    Good luck to you, Derek.

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  • Posted

    Was your mother prescribed it by her GP or a consultant?

    It is too dangerous for a GP to prescribe as a first time treatment. So often at hospitals one sees a young registrar.

    The last one told me that I could not have a cardioversion as my previous one had failed . I pointed out that was totally wrong. Looking at my notes she said that I could only have it done if went on Amiodarone prior to the procedure and after your previous complaints about side effects you will obviously not want to take it.

    The only way to get cardioversion was going to be by agreeing to taking it. That seemed to surprise her.

    She said several other things that were medically wrong and I kept on correcting her. Her letter to my GP was contradictory to the symptoms I had told her. My GP was aware of that and was going to write to her.

    Someone in another discussion said that she now records her consultations on her phone or MP3 player/recorder. That's what I intend to do in future. How many will dare to object?

    We get warning on calls to companies that they record conversations. One asked me what the occasional bleeps were during our conversation. I told him that my phone had the capability to record our conversation.

    He said in that case I cannot continue and hung up on me!

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    • Posted

      So sorry for this very late response, Derek. 

      A young registrar prescribed the drug at the cardiology clinic of our local hospital. 

      Your account is worrying but sadly it seems all too common. We have to be really on our own case, don't we, because half the time they don't know what they're doing. Even a doctor admitted this to me. 

      Where would we be without the Internet? How did people cope when they couldn't do their own research?

      I think we need to record conversations and also request copies of all letters that are sent to GPs etc. The mistakes that are made frequently are unacceptable and truly terrifying.

      Alas, although my mother realizes mistakes were made, she still looks upon doctors as gods who can do no wrong. 

      How are you now, Derek, what's the latest?

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    • Posted

      I was becoming more unsteady on my feet when making repetitive type and short turning movements such as when in the shower. I was washing with one elbow on the wall to support myself or clutching at the shower curtain. If I washed my face at the wash basin I would sway to the side or lurch forward. I was grabbing the edge of the basin to support myself about four times. It was just as bad in the kitchen where one makes lots of small turns, stretching and bending movements or when making the beds.

      Getting up from my chair to go to another room and I was unsteady and clutching at the door also felt nauseous and faint. I once had severe vertigo many years ago and it was a lesser version of that.

      However when I went out I could walk all right until stopping and standing upright. I do a bit of photography and I was swaying when standing trying to take a picture.

      I swayed when waiting to cross the road and kept well back from the edge at bus stops.

      I Googled the effects along with Amiodarone and found several medical reports on 'Amiodarone and disequilibrium' that described exactly the same effects. I stopped the Amiodarone again and after a couple of weeks I was well balanced again. So good that on Monday we went up to Beachy Head, no place for the unsteady and stood for an hour at a memorial service at the Bomber Command monument. Yesterday and today I went to the races after having not gone to the last two meetings. No problem dodging in and out of crowds or climbing up the grandstand.. and a profit to boot:-)  

      I have had a rash on my upper dody and inside my thighs. Last week a locum ruled out side effects to the few medications I am still taking and said that it must be a virus. Today the rash is on the calf of my right leg.

      Back to the doctor and will tell him that I have stopped Amiiodarone.

      The cardiologist will hear the same when I see him after the follow up ECG (after my March cadioversion) next week.

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    • Posted

      My mother was the same, Derek, with being unsteady. That all improved shortly after stopping amiodarone. I have a feeling she had a rash, too, I'll have to ask her.

      It's fortunate that neither of you had a fall and hurt yourself.

      Your rash could be a viral infection, but I have to admit I wouldn't feel convinced by the locum - or any doctor any more. Many medications cause a rash. Nothing to do with rashes, but my daughter was seriously ill in 2010. Three GPs and even a specialist misdiagnosed her and when I told one GP what I thought it was (thanks to the Internet again) he ridiculed me. However, it turned out I was right and they were all wrong. They wanted to carry out a very risky surgical procedure, which would have been totally unnecessary. Scary...

      Please let me know how you get on next week. 

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    • Posted

      I'm sure that next week whichever cardiologist I see will disagree with my thoughts on amiodarone.

      I had a rash years ago when taking Enalapril and went to a BUPA dermatologist. He took one look and said, Drug induced rash. Are you taking Enalapril? Stop it and the rash will ge gone in three weeks.

      I never figured if he was briliant or if my GP had listed my meds on his referral letter.

      Strangely I was at a dermatologist three days before (sun damage on my head)  this rash started. Something in the air:-)

      Thanks to a book by an American urologist and the internet a doctor once said to me that I knew more BPH than he did.

       

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  • Posted

    I was speaking to my GP this morning about my problems with Amiodarone.

    He said that an earlier patient with AF and now breathlessnes probably due to the drug  had been put on a new drug that he not previously heard of. He said perhaps they will offer it to you next week. He said the name but as usual with drugs it is not a memorable word.

    It started Di................ You could ask her GP or cardiologist about any new drugs on the market.

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    • Posted

      Hello Derek, Sincere apologies for taking so long to write.

      Have you been prescribed the new drug, if so, what is it? How are you doing now?

      I have had a dreadful few months as my mother's pulmonary fibrosis (caused by amiodarone) worsened and she died a few weeks ago.

      As pulmonary fibrosis is not an uncommon side effect, it really does beggar belief that doctors often routinely prescribe amiodarone and take little notice when patients develop worrying side-effects. 

      Once again, sorry for not writing. I have been thinking of you.

      Best wishes, Tricia. 

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    • Posted

      I am so sorry to hear about your dear mothers death.

      Now that I am back in sinus rhythm after cardoversion albeit with ectopic beats I no longer need Amiodarone.

      I had an appointment with a keen young  registrar cardiologist two weeks ago. I told him that I had also stopped Warfarin again because of joint pain. Shock horror! He said that he would get my GP to prescribe one of the new anticoagulants. I said that I had been told that they are contra indicated for tissue valve patients as well as mechanical valve ones. Who told you that he asked. One of your colleagues last year when I had first queeried it and he had checked also in BNF.  I said and two since then had agreed. They are wrong he said and looked up his copy of BNF and asked if I would take them. I said yes IF they are not contra indicated. He went and double checked with his senior consultant and came back saying that they were all right to take.

      I didn't believe him and went into our local pharmacy to ask on the way home. She looked it up but did not understand what a prosthetic valve was!

      I E-Mailed the three companies who make the new drugs. They all replied in a similar wording:

      I can confirm that Pradaxa (dabigatran) Xarelto (rivaroxaban) Eliquis (apixaban)  must not be taken by patients who have received an artificial heart valve. This includes both mechanical and biological heart valves.

      Never trust those who prescribe dangerous drugs without checking other sources.

       

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    • Posted

      Hello Derek,

      I am very pleased that you are doing well and also relieved that you are carefully checking what these incompetent doctors are saying.  Clearly we do not know who we can trust and have to do our own research, but it shouldn’t be this way and some people do not have the ability (or Internet) to make such checks. 

      I have written to the local hospital complaining about the negligence in my mother’s treatment. It won’t bring her back or eradicate what she and the family suffered, but maybe it will make them just a little more careful with others…having said that, the Internet is full of terrible stories written by people who have lost relatives due to amiodarone.

      When my mum was prescribed a drug to replace the amiodarone, back in 2010, I checked the dose and told her I thought she was being given too much, and twice a day rather than once. She queried it with her pharmacist who assured her there was no error. In that instance I did trust the pharmacist rather than what I’d read online. It was only when my mum saw her doctor, a few months later, that he realized the pharmacist had given my mother double the dose she should have been taking. These errors must be occurring even more than I had realized. 

      Oh, Derek, how did people cope prior to the Internet? So many were clearly killed my drugs prescribed incorrectly and were none the wiser. 

      Very best wishes, and please do keep in touch.

      Tricia. 

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    • Posted

      When my wife was a nurse a sister on her ward twice misunderstood dosages and was suspended. A niece of my wife also gave a patient the wrong dosage and was moved to another job. Neither were fatal mistakes.

      My wife’s brother who was diabetic had many problems with his treatment as a patient over the years including a GP who did not realise that he had gangrene on a toe that had started off with a simple blister.

      When in hospital to have it amputated he got MRSA.

       Eventually he spent the last five months of his life in hospital with wrong diagnosis and treatments and shuttled between hospitals. One helping him before sending him back to the other for his health to again decline as more mistakes were made.

      His wife and children disagreed with the cause of death on the certificate and asked for an autopsy and were proved right. There was a coroner’s inquest that attached blame to doctors, nursing staff and the hospital. Strangely it was then ruled as accidental death.  

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    • Posted

      Horror stories, Derek, but alas so common.

      I recall an American TV programme, some years ago (Oprah, I think) where a very highly respected doctor was advising everyone to take a relative with them, if they were going to be admitted to a hospital, who could monitor every drug etc. I doubt that would be allowed here, and besides, often relatives wouldn't know anyway. The doctor was warning how many mistakes are made. 

      I am currently reading a book that is supposed to be humorous (about a GP's life) but it is very, very frightening. 

      The medical profession gets away with so much. I have just received a response from my mother's GP (I wrote to complain about his delayed action (many months) over her very obvious reaction to amiodarone. His letter has angered me even more!

       

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    • Posted

      My mother was an active intelligent 82 year old who was found to have a kidney tumor. They wanted to operate in June but she told them that she was going to visit relatives in Toronto and Edmonton travelling on her own in August so the operation was scheduled for her return.

      I phoned her on her return and she was full of her holiday but would tell the full story when we went up to Scotland to look after during her recuperation.

      We never heard about her holiday as her memory was badly affected by the anesthetic. Looking at her holiday photos she could not remember people in them or the places they were off. Her GP said that there is often memory lapse after operations but it usually returns after weeks/months. Hers never did. Her GP and the hospital said that she must have had dementia prior to surgery. She could never look after herself after that and we had to put her into a retirement home.  

      She was otherwise well and lived to 92 when she broke her hip and it was badly replaced and had to be done again. Two hip operations proved too much for and she died soon after. She had been the only person in the home not on any medication.

      She chose the right time to die as she was running out of money and only had enough left for another month of care home fees.

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    • Posted

      Oh, Derek, that is so very sad about your mum and outrageous that her memory loss was blamed on dementia when clearly the anaesthetic was the cause.

      I have received a similar response from the hospital my mum was treated. I wrote to complain about the amiodarone and failure to take her off it for months. They have said pulmonary fibrosis is reversible in most cases (I don't believe this) and that the drug was probably not the cause of that or her death.

      Once again, sorry for a very late response. 

      How are you doing?

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    • Posted

      Without amiodarone, statins and warfarin I feel much better. Last week the practice nurse asked when I last had my cholesterol checked. I said it was 6.7 in May and I don't see much point in getting it checked as I will not take statins again.

      My main worry after my heart valve operation was if it would affect my memory. As soon as I came round I started testing it by talking to the intensive care nurse about things from the recent and distant past.

      Two of the other patients were having memory problems. Normally they say that it improves in time. 

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