Amiaderone for AF

[Echinopsis]

After struggling on for some 42 weeks on Diltiazem and Digoxin with swelling ankles and little improvement in the AF, a locum cardiologist, thank God, started me on Amiaderone in early May 2016 a couple of weeks before a cardioversion he arranged which was successful and I have been fine with steady heart beat ever since.

I wondered if I would ever be able to come off the Amiaderone.....you have to have thyroid and liver checks to be sure it is not causing them a problem.I am going for a second liver test because the GP's nurse said it was a bit 'high' if that is the word, but said nothing to worry about as this can be caused by anything and mentioned stress as an example.

I decided to check with the BHF to see if they knew of anyone who had come off Amiaderone and their nurse told me that in her vast experience, you should not continue to take Amiaderone once the heart was in sinus rhythm which mine was after the cardioversion, albeit with tiredness and low heart beat inititially it took a while for the heart to become a reasonable pace, ie 50 to 60, but mine is often 45 but I am told that if you feel OK, then that's not a problem.

Can anyone tell me whether I should be coming off it, before I go to my GP who between him and the infrequently seen cardiologist, I have had very little contact with. My cardiologist who I saw for the first time after my cardioversion and when I saw him the second time, when he signed me off a few weeks ago happily informed me that the Amiaderone can stop working at any time. Why he would tell me this when he was signing me off I cannot imagine. I have no heart problems, ie faulty valves etc.

When searching Amiaderone through the NHS/Patient UK web sites I find in contradiction to what the BHF nurse told me 'Treatment with amiodarone is usually long-term unless you experience an adverse effect'.

I would be grateful for your views about the Amiaderone and more generally what you think my position is likely to be? Thank you

[BobD Volunteer]

I think you need to consider finding a different doctor as under European Cardiology Society protocol, Amiodarone is considered the last resort drug in AF due to it's toxicity and is generally not advised for more than a few (maybe up to six ) months. Ideally you should see a specialist in arrhythmias like an electrophsyiologist who are the electricians of the cardiology world. You wouldn't ask a plumber to wire your house now would you.

[Echinopsis in reply to BobD]

Thank you. This will give me something to speak to my GPS about. I was thinking of asking for a second opinion and the electrophysiologistaff sounds like who I should be seeing. Much appreciated m

[Hidden]

Amiodarone has well documented side effects and is not a medication of first resort. It is also not long term medication. My recollection is that it would be precribed by a cardiac specialist - usually an Electrophysiological (EP) - and there is a set procedure for handing over monitoring to a GP. It has a long half-life and will remain in your body for some weeks after you stop taking it. You are correct that you need regular blood tests to check for liver function. If your urine turns coffee coloured you should seek medical advice straight away as that is an indicator that Amiodarone has compromised liver function. Although it''s a rare condition that clinicians misdiagnose as pneumonia, a non-productive cough with a crackling sound when breathing could be COP / pulmonary toxicity. A chest x-ray will be required and, if a mass is present in the lungs, the treatment is Prednisolone not an antibiotic, I'm not a clinician but I have experienced this.

[Lynneee]

Does anyone know anything a out silent AF

[Echinopsis in reply to Lynneee]

Yes, if my understanding of your question about silent AF is a sfollows. Apparently a good proportion of the population have AF without knowing they have it which is a major contributor to strokes.When you have AF, a blood clot can develop in a corner in the left atrium which breaks loose and lodges in the brain restricting the blood supply causing a part of the brain to die.This is why they put you on blood thinners when you have AF, to prevent the clot building up!

If this is not what you meant, then I can confirm that when I am in bed I can hear my heart beating. Whether this is the same for others with AF I don't know, but if their heart beat is silent, I am not in a position to speculate whether or not they would be aware they have AF or not.But I am sure one can feel it even if it is silent because it is most uncomfortable.

[maund]

Hi this is my first post just joined , I have been Amioderone for 12 months after a failed ablation , was also wondering how long u can take it ? I have just turned 40

[Echinopsis in reply to maund]

See some of the replies I received and some of the information I have gleaned in my original request for information. Answer.... nothing is 100% certain about how long you can be on it.I have to say I feel very well and almost normal, more so now than when I first started on it.Others I see here had stopped it and everything was fine for a couple of years and then the AF returned. Something I would not want to happen to me, so I must tread carefully when I see my GP. Others here felt very unwell on Amiaderone! Maybe everyone is different and some can put up with Amiaderone without side effects and others can't stand it, with many shades in between ?

When I see my GP in a couple of weeks time, if I glean any more information I will let you know. I am going to say to him that I have heard Amiaderone is not something you should be on long term Also, does he think a second opinion as to my actual condition via an electrophysiologist is a good idea.

It could well be that he doesn't know. I asked the chemist at my local Boots if there were many people on Amiaderone in the area ( a small rural town in Lincolnshire) and she said there were not many.I may ask my GP the same question whether he has many patients on Amiaderone for AF with no other heart complications/conditions. Perhaps it tends to be more frequently prescribed in some parts of the country than in others.

[maund]

I have struggled with Afib for 6 years , I have been on almost all the the medications available ! I have no side affects from Amiodarone and like u I feel normal again , my mum has been on Amiodarone for 15 years with no side affects , but everyone keeps warning me about it

[Echinopsis in reply to maund]

Well, if your Mum has been on Amiaderone for 15 years, then that must to a degree answer your previous question about how long you can stay on it for.Is your Mum in good health and no side effects? Does she do anything else to lessen the reacurance of AF, such as not having alcohol or too much coffee, going for walks every day for half an hour, the five a day and so on.But the fact she has been on it for 15 years is something else I can mention to my GP when I see him. Look forward to hearing from you and thanks for the information.

[maund in reply to Echinopsis]

My mum is very well , she does not drink but does drink coffee , does walk a couple of times a week , my uncle has also been on it for 10 years no side affects , but must use lots of sunscreen

[Echinopsis in reply to maund]

Thank you maund. That is very helpful and would suit me fine if I could be on it for that length of time your Mum and Uncle have been on it with no side effects.I keep out of the sun if it is anywhere near to being 'hot'. I did wonder if the body also heats up in very hot weather more than it might normally do because of the Amiaderone, which happened to me recently when I couldn't do anything for the rest of the day having been foolish enough to be out in the mid day sun doing some gardening.It could of course be 'old age' though if it is, it came on very quickly. But the weather is getting warmer.I was told by a couple of people I should have had a cold shower to cool off which I think is common sense really.My neighbour was telling me he was feeling unwell whilst in Australia having been out in the sun for too long and his relatives threw him in to the swimming pool fully clothed and he was better in no time at all.Useful information when climate change begins to bite! Best regards.