Amiadarone

[Jishuang44]

I have dilated cardiomyopathy which caused first cardiogenic shock and later cardiac arrest earlier this year. Prior to both of these events I had recently started to have AF.

I was given cardioversion and put on 7 new drugs including Amiadarone. Since then I have started to experience a bunch of what my GP thinks are Amiadarone side effects including photosensitivity, a vast number of new moles, skin tags & skin lumps, osteoporosis (prior to taking it I was only osteopenic), and build up of plaque in my corneas (the eye hospital say this is a rare side effect and wanted all the students to have a look at me). I badly want to come off the Amiadarone but Cardiology are trying to say there are no other drugs.

What are other people on here taking as alternatives to Amiadarone? Is there anyone like me who has dilated cardiomyopathy and AF?

[mjames1]

Because of the cardiomyopathy, your choice of antiarrhythmic drugs are limited with amiodarone being the most effective

With monitoring, alternative antiarrhythmics like Soltalol might help. Stronger antiarrhythmics. like Flecsinide would most probably be contraindicated because of the cardiomyopathy.

Have you been referred to an electrophysiologist (ep) yet? They are the most experienced to deal with these types of medications. and if suitable, they can offer you a catheter ablation as an alternative.

Because of the NHS waiting times, a number of members have had their initial consultations as a private patient allowing them to see a top ep in weeks instead of months or longer.

Jim

[baba]

How symptomatic were you from the AFib.

Some of those are serious side effects, I’d want to be off the drugs causing them.

[Jishuang44 in reply to baba]

I was getting short bursts of AF, often in the evening, for a couple of months, nothing continuous, but then I went into cardiac arrest before they had done the scheduled cardioversion, which was done subsequently while I was still intubated. My GP asked Cardiology recently if I could at least reduce the Amiadarone dose, but was told no. The Cardiologist thinks the side effects are fine/acceptable but they make my quality of life not great at times and when combined with the side effects of my other 6 drugs it feels like a pic n mix of drug-triggered medical conditions. I know I am lucky to be alive but I do think they could consider other drug options for me.

[frazeej]

Tykosin is a potential alternative to amiodarone for afib with heart damage.

JimF

[kitttycat]

Hi, I was given amiodarone when afib never stopped. I became aware of side effects after the fact, however I was followed up thoroughly and didn't take it for very long. I was then given flecanaide and took for a month because of the effects, and then given propafernone. I had to alter the dose and take half of 150 - 2 x daily because I couldn't handle it (with one digoxin. low dose). I was told these are the only three drugs I can take that will work, that there was nothing else available. I am okay with it. I hope you can work things out, the very best to you.