I am now on 200mg each day after the 3 a day and the 2 a day introduction period. I have to say that I feel absolutely awful. I have heart disease , AF , kidney disease and diabetes t2 . PTSD and depression.
I am so anxious at the moment because I have a very sore throat and a slight wheeze first thing in the morning. At any other time I would assume it was a cold but having read the horror stories available on the web I am now very anxious that I have the beginning of lung damage and associated risks.
I have approached two GP's in the practice and they dismissed my concerns out of hand, declaring that they have prescribed it for decades. But no mention of the constant watch on my liver, lung , eye function. Even the heart specialist appointment that was confirmed with the GP has not been arranged.
I want to stop taking it ASAP but worry about the repercussions from the doctors.
Any positive thoughts ?
Written by
diabeticguy
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Amioderone has many short and long term effects that can be devastating. In the US other drugs are available that are much safer. In the UK and Europe apparently this is not the case . Only your electrophysiologist can make a cost/benefit decision on whether it is worth taking Amioderone. If you are in the states ask about Tikosyn.
My husband has been on it for years and has terrible dizziness and tremors from it among other things. The prescribing cardiologist says it's not from the drug; different doctors, different hospital says it is. Have been waiting for months to see their cardiologist! So frustrated!
I have called many times for a cancellation and have unsuccessfully asked the PSP doctor and stroke doctor to help me get an earlier appointment but to no avail.
I had pain between the upper shoulder blades then a slight cough that progressed to a cough on intake of breath I couldn't take s full breath so went to the doctor where he found I had early pneumonia
I will never take that drug again although it was against doctors orders that and Sotolol never again
I'm so sorry that you have so much to put up with. I first took Amiodarone 26 years ago and have been on it several times since with 18 months being the longest period. Apart from a slightly underactive thyroid which may or may not have been caused by this drug I don't appear to have suffered any lasting effects.
I think sometimes we have to trust our specialists and not get carried away with the hysteria which surrounds this drug. Of course you do mot have to take it. Myself I was switched over to Disopyramide which I have taken for many years without the side effects of Amiodarone.
Hi and welcome. Oh my goodness you have a lot to cope with and so I am not surprised your anxiety is so high.
I am trying to unpack your post as I read it so please correct me if I have misunderstood. It seems to me that your anxiety is both underlying background and about specific points which seem to focus on your concerns for your health generally but also about possible side effects from Amiodarone which is a very toxic drug when taken for longer periods of time. Your other concern is the lack of empathy and understanding of your concerns and the lack of monitoring and follow up from your GPs.
I have never taken Amiodorone- it has been suggested and I have always refused so have been offered other therapies for my AF - but I don’t have the complications that you describe. My understanding is that Amiodorone does an excellent job of controlling arrythmias and it is known to be the most effective currently drug generally available and is often used to help control AF so has benefits. And it is also normally the drug of last resort, when it is important to take because it may be in your best interest and the priority if you have heart failure to stop the Arrythmia. Usual proviso - I’m not medically trained so anyone who knows better - please advise.
It is easy to blame every symptom on affects of a drug and most of the time it probably will not be - a sore throat is probably an infection but the only way you will know is that sore throats usually clear up within a few days. However - Amiodarone has serious affects when taken for longer periods than 5 weeks and it also takes a long time to clear your system. As with any drug it will have benefits and risks and it is a balancing act for anyone to say - are the benefits gained now - ie controlling the AF - bigger than the possible affects longer term? And that is a decision which can only be made with discussion with your doctors.
It is important that you are monitored and it is your GP’s duty to monitor you so if a plan has not been initiated, I would suggest you write a letter to the practice manager asking for a care and monitoring plan. Anything put in writing to the practice manager cannot be ignored so if you don’t receive a reply within a reasonable amount of time you would then have cause for a complaint.
My understanding is also it cannot be prescribed in primary care and has to be initially prescribed by a specialist cardiologist but that specialist should write to your GP with a care plan and you are entitled to receive a copy of that letter - but you will need to register to ensure you receive a copy.
Is your appointment with the specialist an initial appointment or a follow-up appointment? In our area getting any appointment with any specialist within a reasonable amount of time is proving very problematic - too many patients and too few doctors so unfortunately you may have to wait and I know that can be difficult when you are anxious.
What is inexcusable is your GP not taking your concerns seriously but I also know from experience that if you are diagnosed with PTSD then it is easy to be dismissed as overly ‘anxious’ patient - which is why it is important to be calm, logical and work systematically and logically to pursue answers.
This is a link to the NICE guidelines for Amiodarone- read through them and then take them with you to your next GP appointment.
Just as a last thought - you have the right as a patient to refuse any treatment - but use wisely because doctors are also human and can be biased, can misunderstand and it is important to be able to have a good working relationship with your primary care provider. If that proves difficult or impossible you need to look at alternatives - if there are any. I would also suggest that if you struggle explaining your concerns or feel you are not taken seriously you get someone you trust to attend your appointments with you and ask them to advocate for you, I have advocated for several people in the past, wich then had a successful outcome.
I hope some of this has helped and do let us know how you get on.
You say that "Amiodarone has serious side effects if taken for longer periods than 5 weeks". Could you provide the information source for this statement?
That was not my meaning - my understanding - from asking my own doctors - is that Amiodorone use for periods of longer than 3-6 months is not recommended as toxicity builds in the body and may cause the affects others on this forum have suffered.
My meaning was that one has to weigh up the positives the drug can bring against the risks - which will be very individual. For me with (then) Lone AF the risks of Amiodorone were unacceptably high.
I have been taking this drug for many years and also Dijoxin, had no reaction other than, it did screw my thyroid up, but glad it did, because when they went in they found thyroid cancer, which wouldn't of been found otherwise, it takes many years use to cause lung problems and eye problems certainly not immediately, not a nice drug though, tried first ablation to get off this drug, but I am back on it as ablation didn't work. Going to see specialist to try out other drugs, but saying that Ameoderone has kept my af at bay for many years though. You would have to wonder what is worse af, or taking your chances with this drug, not too sure
200mg daily is supposedly a low maintainance dose and with a little research you will find data on trials that provide comprehensive information relating to side effects. It may take a while for your body to adjust so a little perserverance may be required. Ensure that you have regular(4 monthly) blood checks and your cardiologist should have an action plan for you. Stick with it and you may find that tomorrow will be a better day. And so it goes... Good Luck.
From memory, I found Amiodarone gave me a slight wheeze. This should not be ignored and they should check your lungs and give you the breath into a tube test. I hope that you have been put on Amiodarone for short period only with a view to an Ablation. This is not a long term treatment due to the number of side effects.
You need to have a plan to get off of that drug as soon as possible although for me it was the only drug that stopped the AF.
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