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Should I take Amiodarone for AF, if not what else is there?

Posted , 6 users are following.

maggie34838
maggie34838

I've been on Bisoprolol 10mg for 3 months with no effect on my Paroxysmal AF episodes so was started on Digoxin, now at 187.5mcg also with minimal effect. My Cardiologist and GP are pushing me to take Amiodarone but reading stories of side effects I'm terrified. I live in NZ so don't have the choice of Dronaderone. Have others refused Amiodarone and if so what were they then put on? I feel backed in to a corner with not many choices left. Thanks Maggie

0 likes, 20 replies

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  • derek76
    derek76 maggie34838

    Posted

    It is the most effective treatment but the write ups say that Amiodarone is only for life threatening arrhythmias but consultants dish them out like smarties. Dronaderone seems almost as bad.

    I have twice been prescribed Amiodarone once after going into AF after heart surgery and the second when a colonoscopy started it again by stimulating my vagal nerve.

    The first time the surgeon said that I could stop it after being in Sinus rhythm for six months so I took his advice rather than that of the cardiologist who wanted to keep me on it.

    The second time I was blackmailed into taking it as I was told that I could not have a second cardioversion unless having taken it for eight weeks. 

    The first time it affected my eyes, gave me a tremor and an unsteady gait.

    The next time it again affected my eyes, brought back the tremor and totally disturbed my equilibrium making tasks that involved small turning movements when showering or working in the kitchen dangerous.

    I would not want to take it long term. Did Google find you ‘the history of Amiodarone’?

     

    • maggie34838
      maggie34838 derek76

      Posted

      Thanks Derek, Yes have read history of Amiodarone - frightening reading! How did it affect your eyes? I have 6mthly eye checks because my eye pressures are always high - I have chronic narrow angle with ocular hypertension so sort of pre glaucoma. Maybe this would preclude me from Amiodarone, altho I don't think my cardiologist would think it reason enough! Have you found any antiarrhythmics helpful?
    • derek76
      derek76 maggie34838

      Posted

      I had floaters in my eyes each time that went after stopping it. I also had slightly blurred vision. For a few years they had been concerned about the pressure in my eyes then a more intelligent specialist said that it was a misleading result as I had thicker than normal cornea.

      I had cataract surgery last August and October and my eyes were fine but the blurry vision returned during the time  I was put back on Amiodarone from January until stopping it in May.

      I don't know what other drug to suggest to you. Bisoprolol slowed my heart rate to the low 40's, high 30's and gave me a distinct lack of power when walking or making any effort.  

      The cardiologist I saw in December had said that Biso would be enough but his Junior colleague in January insisted on Amiodarone. However after my cardioversion the first one said to stop the Biso as my heart rate was so low but to continue with the Amiodarone! When I saw him for a follow up in June he agrred that the Amidarone would have caused my loss of equilibrium.

  • malcolm96513
    malcolm96513 maggie34838

    Posted

    I was diagnosed with PAF in 2011 and have been on Flecainide since then.  After an episode due to surgery I was also given Bisoprolol in 2012.  I have not had a repeat since Jan 2013.
    • maggie34838
      maggie34838 malcolm96513

      Posted

      That's great, I think I want to try either Flecainide or Rythmol before Amiodarone - I'll see what my doc thinks to that!
  • moira23432
    moira23432 maggie34838

    Posted

    I had two cardio inversions the last one in January after this one the specialist told me he was changing meds to Amiodarone didn't explain or anything so I got the prescription and was told to take 1 three times a day for 7 days then it changed I only took this for 2 days and I was a write off brain wouldn't work, crying for no reason, shaking for no reason really unbelievable reaction went to Drs. (by the way I am NZ too) told me to stop the meds immediately as it was an adverse reaction to that it took nearly 2 months for this to get out of my system seemingly doesn't matter whether you only take it for 2 days it is horrendous, I had the skin peel off my palms also then the soles of my feet.  To please do not take it at all Amiodarone possibly should be taken by the specialist then maybe they wouldn't prescribe it to anyone. ( Sorry another thing I should have mentioned there were also rashes and swelling of legs)
    • maggie34838
      maggie34838 moira23432

      Posted

      Hi Moira, Wow what an awful experience! What are you on now? So you live in NZ too, I'm in Nelson, where are you? Interested in your experience of Specialists, have you found them helpful? Take care. Cheers Maggie
    • charles67285
      charles67285 maggie34838

      Posted

      Been on amiodarone for three months, never had any problems, due for cardio version in three weeks.o
    • derek76
      derek76 charles67285

      Posted

      In wet blanket mode, side effects often occur after months on the drug. Even worse after patients have stopped it as it stays in the system for so long.
  • moira23432
    moira23432 maggie34838

    Posted

    Hi I live in Blenheim,  I actually told the specialist who put me on amiodorone that if I had seen him in those first few days of reaction I probably would have done something that I regretted to him,  he said it wasn't his fault MedSafe had it listed for use.  I am only on metoprolol now which I was on prior to the amiodorone really too scared to try anything else.  What I have found is that the specialists  don't really tell you enough,  I find that I google things more now.  I have been told now to go to my doctors, so that's what I am doing,     I think we have to ask a lot more than we do.  You take care too, Moira.
    • maggie34838
      maggie34838 moira23432

      Posted

      Hi Moira, Just wondered how you were doing? Do you have a Specialist in Blenheim or do you have to come to Nelson to see a Cardiologist? I was very frustrated with mine because I didn't seem to be getting any better and all he could offer me was Amiodarone which I declined having read the side effects and history of it. So in desperation I went to Hamilton to see an Electrophysiologist - he listened to me and put me on Flecainide. It's made all the difference, I get occasional very mild AF and I have my energy back. He also took me off Bisoprolol, that made me feel so much better. Thanks to all the people who replied to my question. Cheers Maggie
    • moira23432
      moira23432 maggie34838

      Posted

      Hi Maggie,  wondered what had happened to you.  The cardiologist comes over here to Wairau but I found out that the specialist who I had been seeing was not a cardiologist but a general specialist.  So no I haven't seen a cardiologist, and the cardiac inversions were done by this general specialist plus he was the one who put me on the amiodorone which had a severe affect on me.  Would love to hear more about the Electrophysiologist in Hamilton and how you got on to him please and are you on warfarin for blood clotting?    Hope to hear from you soon. Cheers Moira.
    • maggie34838
      maggie34838 moira23432

      Posted

      Hi Moira, My Nelson Cardiologist, Dr Ram Nair was very keen on Amiodarone but as I said before I wasn't. At the time, because my symptoms were so bad I wanted to have an ablation so I went to Hamilton to get a second opinion from Dr Martin Stiles. I did a lot of research and found that he was an expert on arrhythmias but I had to pay privately for an assessment. The drugs he prescribed have changed my life and my symptoms are much improved. I think I would still like an ablation but wouldn't be offered one as Flecainide seems to be working for me. I am on Warfarin, I was on aspirin but asked to change after reading that it wasn't really recommended for AF. I find warfarin fine, after the initial time of getting the right dose I'm now stable and only need blood tests monthly. Are you free of AF now and what drug did you go on after the amiodarone gave you such awful side effects? Take care, cheers Maggie
    • moira23432
      moira23432 maggie34838

      Posted

      Hi Maggie,  I am absolutely thrilled for you,  I wish I was free of Af now but I don't think they know what to give me I have had so many reactions to drugs that I am probably overly cautious now,  at the moment I am only on Warfarin and the one I was first given for the AF Metapropol which I didn't have any side effects on and only being monitored for the Warfarin.  My husband isn't too well at the moment so once he is better I might try Dr Stiles for another opinion going privately seems to be the best  option.  Thank you so much for the info.  Take care, Moira.  ps. I think we have to really do our homework on this and not just accept what they say that we should do, which is what you did and I can tell there is a marked improvement from the way you write too.
    • maggie34838
      maggie34838 moira23432

      Posted

      Hi Moira, I really sympathise with you, I had a terrible 8months with the episodes of AF and drugs that did nothing but made me feel tired, no energy and depressed. As you say you have to take things into your own hands, do the homework and find the person best able to help you.

      Try googling Martin Stiles, as well as being a Cardiologist and Electrophysiologist he did his PhD in Atrial Fibrillation. If you ever want to phone me for more information, my number is 548 0502. I think most of the Cardiologists at Nelson Hospital are OK, they just don't specialise in arrhythmias but you could ask to see one of them instaed of your General Specialist. Let me know how you get on. Maggie

    • moira23432
      moira23432 maggie34838

      Posted

      Hi Maggie,  thank you for your phone number,  mine is 5728310.  Sorry I haven't answered you sooner but my husband was really bad on Monday and I had to ring an ambulance and he has been in Wairau Hospital since then,  I have been going there three times a day so haven't had much time,  just heading there in about 15 minutes.  I really am so glad that you are feeling much better.  Moira.
    • maggie34838
      maggie34838 moira23432

      Posted

      Hi Moira,

      Thanks for your number and so sorry about your husband, you must be very worried. I do hope he's improving. Look after yourself, going 3 times a day must be tiring and stressful for you.

      Take care. Maggie

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