The dreaded Amiodarone.

[Costa-Del-Solway]

Hi Folks,

I'm new here, but not new to AF, long story but went in for a 'day surgery' simple procedure over 8 years ago, took a reaction under the GA and ended up with the defrib to get the heart going. In the process the rhythm got messed up and bothered me ever since. I had a pacemaker fitted in 2006 mainly for bradycardia.

I have seen amiodarone mentioned on several posts, I have posted a copy of my replies below, but this is a drug to be avoided, not trying to worry you but read the links, these are stories from sufferers and family members from patients who have lost their lives to this stuff.

I had been on it for 6 years then they increased my dose, and yippee my pacemaker showed my AF occurrence was less than 1% of the time over a 6 month period, prior to that I was Paroxysmal AF and maybe had 20 - 30% AF.

Anyway, this is the copy of my post / reply.....

Amiodarone is poison.

Look at the Facebook page - Stop Amiodarone

Read amiodaronetoxicity.com/...

I was on it for 6 years then started with a cough after they had increased my dose to 2 x 200mg a day, over 9 months I went thro being told I had a shadow on my lung from an X-ray, CT scan and they told me it was a tumour, PET scan then said not cancer, then had a CT guided biopsy cos it was at an awkward bit to get at, and all inconclusive. Then had a thoracotamy and removed a section of my lung and told it was not cancer it was a brown sticky stuff. A week after I was released from Clydebank Jubilee Hospital, my local hospital did another chest X-ray and it was a lot worse and spread to both lungs. After a few weeks in hospital and daily getting worse they were trying to identify what the 'infection' was, but no joy. Then after a lengthy chat with a doctor from infectious diseases asking about travel, she then looked at my medication and she thought on lung toxicity and suggested stopping amiodarone. When I read the patient information sheet provided with the tablets, all the symptoms I was suffering were listed. You don't think to read these after you've been taking something for 6 years. After a week the cough stopped, and it took a long road to recovery and get the poison out my system as it takes over a year to get totally rid of the stuff.

Now I have persistent AF 100% of the time, had an ablation last August, I was free of AF for 6 days then back into it full time. Got another ablation 3rd Feb, fingers crossed this time.

I am heading off to the hospital in a few hours, so will not be able to respond for a few days.

Tom

[BobD Volunteer]

OK interesting to hear from somebody who has suffered BUT lets us not get all scared here. Firstly I think your problem came not just from the amiodarone but from the lack of regular testing and checks by medical staff. Amiodarone has been known as the "Domestos" of anti arrhythmic drugs for years and has a place but as I have said before it is not something I would want to be on long term.. Under European Society of Cardiology guidelines it is the last drug of choice where all others have failed yet still some cardiologists put patients on it long term. I had it by drip after my first ablation when things went horribly wrong side up and while it did convert me back to NSR it left my arm swollen and painful for weeks. Even after that I wouldn't reject it as a useful tool but short term.

My point is that I really don't want members to suddenly run away from it but yes question why you are on it and what controls are in place. Lung problems, thyroid problems, skin pigmentation and deposits in the eyes are all long term symptoms but sometimes it is the only thing that will work.

Good luck with your ablation and I hope it is as successful as mine have been.

Bob

[Bagrat]

It really is horses for courses isn't it Bob. I had iv amiodarone on my first AF episode. Didn't work and was about to be given another armful when CCU said no as you need a central line for more than one dose (because your veins don't like it I assume (esp. after reading Bob's experience). Had it again second time I was admitted in spite of the fact I said it didn't work before! Next time doc said "oh I'm a chest physician wouldn't use it".

Having said all that, if it worked for me and was prescribed by someone I trusted, I would give it a whirl as all medication has a down side for some people. Sorry you had such a bad experience. Wendy B