Please help! Want to get off amiodorone- any good london cardiologist?

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My dad is 66 years old and has an ICD fitted because he has had arrythmias (VTs).

Last august 2013 he was quite fit and healthy- but he was put on amiodorone because his icd fired for the second time (we believe it is because he hadnt taken his water tablet regularly and his body was water-logged). At the time two cardiologists argued about whether he should be put on amiodorone given that he had a pre-existing thyroid condition (which was under control and settled at that point). His cardiologist won the argument and he was put on it. In september 2013 he completed a cardiac rehab programme and was jogging on the treadmill and seemed to be in a good state.

However since starting amiodorone we have seen his health deteriorate and he is now in hospital not even able to stand up.

He started having problems with his thyroid and in jan 2014 was put on thyroxine which was increased to a level of 100mg- but the endrocrinologists can not get the level right as they attribute the thyroid dysfunction to the amiodorone. They asked for the amiodorone to be stopped but the cardiologist refused. It has made him over-active at times and under-active at times- again in march 2014 his icd fired because of such fluctuating thyroxine levels.

Also since starting amiodorone he has a terrible cough and has suffered shortness of breath. He has had repeated chest infections for which he has been hospitalised. A Respiratory consultant saw him last week and said it was due to the amiodorone and recommended it was stopped. From reading up i understand this is pulmonary toxicity caused by the amiodorone.

On wednesday last week my dad has been hospitalised for a chest infection and the registrar seemed convinced that the amiodorone should be stopped. However when the registrar consulted my dad's cardiologist he refused to let him stop amiodorone. Instead he wants to keep him on it and introduce mexilitene (another potent drug). 

We are at a loss. We know that the amiodorone has caused so much damage already and many of the experts involved (initial cardiologist, endocrinologist , respiratory consultant, registrar) believe he should be taken off amiodorone but nobody can over-ride his cardiologist.

We also think that he should not start any other drugs as he has an ICD which would fire if he has any life-threatening arrythmias.

Please can anybody help if they have had a similar experience or know a cardiologist who has helped them to come off amiodorone when they have seen adverse side-effects.

Also what alternative drug is there to amiodorone- we have read about Sotalol - has anybody transitioned onto this drug?

Any advice would be greatly appreciated- our family are desperately worried.

 

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  • Posted

    Amiodarone is a devilish drug withmany side effects. Some take years to show up or  linked to ill health. There are many discussions on this site on its affects if you browse.

    About 16 years ago a friend was fitted with a pacemaker and prescribed amiodarone that he was told that he would have to take for life. The side effects made him for the first time in his lifedisregard medical advice. What would he have been like now if he had continued with it.

    The surgeon told me that I could stop it and warfarin six months after cardioversion for AF caused by heart surgery. The cardiologist disagreed. I had a tremor, unsteady gait, loss of equilibrium  and eye problems so I stopped it. After a few weeks I could walk a straight line and bend. twist and turn without feeling that I was going to fall down or pass out.

    Google amiodarone and loss of balance/equilibrium and you will find many references. Also Google 'the history of amiodarone' and be very afraid of it.

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  • Posted

    Derek76

    I am sorry to hear of your horrible experience with amiodorone but am glad to hear you managed to come off it.

    We now desperately want my dad to come off it but want to know if he can just stop it or whether he needs to wean off it. He has been on 200 mg since August 2013 .

    If anybody could offer any advice it would be greatly appreciated.

    thank you

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    • Posted

      Hi Sonia

      I have been reading all the posts regarding Amiodarone. I have been taking it for 12 wks & have not had a nights sleep since, which considering my heart health cant surely do me any good. 

      After reading your post I have decided I will ring my cardiologist this morning & come off the drug, I have already requested change of care to another hospital so that my EP can oversee my care. 

      I am so sorry to hear your dad is in hospital, how is he today? Can you ask for a second opinion from an electrophysiologist, as they are specialists in Arryhmias they maybe able to suggest he comes off Ami & try something else.

      I am also of the opinion that having had a defibrilator fitted why take medication as well & give us the risk from side effects. 

      I do hope you find a way for your father to come of this med, good luck & keep in touch. Annette 

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    • Posted

      Hi Rosie

      I'm sorry you are having trouble on amiodorone. I can only speak from my dad's experience and obv I am not medically trained but I really have seen his symptoms deteriorate since being on amiodorone. 

      He is still in hospital on oxygen- and still on amiodorone - at present nobody is looking at the opinion of the respiratory consultant. I think unfortunately at this stage there is no sure way of knowing what is causing this problem and also what withdrawal from this drug will do while he is so weak.

      I really do hope you get a solution and find the right balance of drugs so that you can stay healthy.

      Good luck

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    • Posted

      Have you spoken to the respiratory consultant again? He is obviously unhappy that his opinions are being over ruled and should stand up to the cardiologist.
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    • Posted

      Hi Derek 

      He was seen by the respiratory consultant while he was out of hospital. In his letter he said the most likely cause of the repeated chest infections and breathing problems is amiodorone. But he also wrote it could just be a chest infection- the cardiologist is going with that assumption. We have asked them today to look again at the respiratory consultants diagnosis and also to consult their own respiratory consultant.

      Let's hope they get there in the end

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  • Posted

    I am writing in such despair as these doctors really do not appear to know what they are doing. My dad is still in hospital on amiodorone but unable to come off oxygen as his oxygen levels fall. The doctors will still not accept that the most likely cause is amiodorone toxicity- they have said that when my dad comes out of hospital he can talk to his cardiologist about coming off.

    In the meantime they want to do a dye lung scan which could compromise his kidneys- their reasoning is that there may be a blood clot causing the low oxygen uptake. We have told them this is very unlikely as he is on warfarin which is usually very effective at preventing blood clots. They are still just disregarding the diagnosis of the respiratory consultant who said the most likely cause is amiodorone. 

    My dad tries to argue with them but they just aren't listening and he is very weak and not medically trained - and there is a large turnover of doctors (some quite junior) who keep trying different things but none of whom are looking at the most likely cause.

    i guess I have come on this board to vent as I am so frustrated about how these doctors seem to be just watching my dad die- none of them seem to have a grasp of the side effects of amiodorone.

    If anyone is about to go on this drug please educate yourself about the side effects so you don't have to go through anything like this.

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    • Posted

      Is his cardiologist not from the hospital your father is in? Have you made contact with the cardiologist to make him aware that they are slowly  killing him?

      What would be the situation if you demanded that he be transferred to another hospital?

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    • Posted

      Hi Derek

      We have asked that the cardiologist at the hospital that my dad is at has a look at the situation instead of referring back to his original cardiologist who keeps insisting he stays on amiodorone despite its devastating effects.

      The doctors at the hospital seem to know that the amiodorone is causing damage but their hands are tied by the original cardiologist who said not to take him off amiodorone and in fact to add mexilitene to his medications.

      I am hopeful the new cardiologist will be more sensible.

      Will post on this board once I know.

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    • Posted

      If he is in a hospital that the original cardiologist is not associated with surely they can they must treat your father as they wish. Also as the situation has worsened how can they be bound by the orders of one who is not seeing the patient.
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    • Posted

      I completely agree with you- my dad told them that the cardiologist from the hospital he is at needs to review his case and disregard the opinion of his cardiologist who has not even seen him. Also now my dad is being more firm with them and asking for a clear explanation as to why they are not looking at the diagnosis of the respiratory consultant who clearly said the most likely cause of his problems is amiodorone. 

      So sad that at a time of illness we have to take on the medical profession too! Anyway I hope we get there soon

      Thank you for all your help- it is much appreciated 

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    • Posted

      A friend going into hospital once asked me what he should take with him.

      I told him a mobile phone and the name of a good lawyer. That holds good today.

      Apart from PALs hospitals now have Matrons (again). Their duties include  looking  after patients and and liasing with doctors. Presumably they go on the daily ward rounds and are then aware of concerns patients bring up with doctors at that time.

      It sems to be quite common now to be prescribbed by people who do not see you. When I had my heart valve replacement two years ago they could not get a catheter into my bladder due to my enlarged prostate and a prostate infection I had previously warned them about. They had to use a  suprapubic catheter. An unseen urologist later prescribed Tamsulosin. They ignored the fact that I told them that alpha blockers had previously put my heart rate into the 140's.

      My blood glucose was fluctuating wildly and an unseen doctor prescribed for that.   

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  • Posted

    An update: Thanks

    In the end he came out of hospital- still suffering from terrible cough and difficulty breathing. They did a scan of his lungs with dye ( not sure what it is called) as the cardiologist was looking for another reason for his symptoms apart from amiodorone. That showed nothing. Then they made him do a bronchoscopy which again showed no other cause for his symptoms. My father then went against the cardiologists advice and weaned off the amiodorone. That was about six weeks ago and so far the results have been fantastic. His cough has subsided - he feels much better and has been doing physiotherapy to strengthen his muscles. He has had no arythmias so far. It is early days but we are hopeful that he has made the right decision. His quality of life is certainly much better- from being confined to a chair finding it hard to breathe he can now walk and exercise. Will post again to update.

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