Anyone take amioderone?

[Cabinessence]

With my ablation on the 14th July and the recently prescribed Sotalol not really reducing my heart rate, I've been put on to Amioderone and a lower dose of Bisoprolol (2.5mg) which I only came off a month ago as it made me feel so rubbish. Apparently it's to get my heart back nearer normal in prep for the ablation and will stay on it post op for 2 to 3 months whilst my heart recovers. But having Googled it, I'm very apprehensive about taking it. Any reassurances from fellow prescribees out there? Then where to go if the ablation doesn't work? The thought of going back on just Bisoprolol again (as it does keep my heart rate below 100) for the rest of my life and being out of breath just climbing some stairs, tired all the time and brain fogged, does not fill me with hope.😪

[Territorial]

I am on Amiodarone 200mg it works fairly well for me in saying that it does not completely stop it,, also its not for everyone and has plenty of side effects..

The morning is when i normally take it and prior to my ablation i never took my dose that day so i was in A fib when they operated i think they were happy about that..

Prior to Amiodarone i went on Dijoxsin 125 micrograms it did virtually nothing for me...

Anyway Cabinessence good luck with your health and i wish you the very best with your ablation...

[Rainfern]

I’ve been on amiodorone for 4 weeks. Like you I was full of apprehension because of potential side effects, but so far no problems apart from sleep disturbance in the first couple of weeks and the cost of a new sun hat. They monitor thyroid, liver and chest closely and hopefully after a second cardioversion in a few weeks time or ablation at the end of a very long waiting list I’ll come off the amiodorone. Some people are apparently on it years without a problem, but like all drugs it can hit some people hard. There’s risk with all drugs and all procedures, but if you trust your EP cardiologist I’d go with that.

[BrotherThomas]

I've just come off it after taking it for just over two years at 200 mg a day. I had no problems with it, in terms of side effects but it didn't actually work for me.

[primrose71]

hi everyone is different I was only on it for a couple of days wasn’t good we light headed and feeling sick so came off it good luck and hope you feel better soon take care x

[scool]

Hi,

My dad was put on Amiodarone a few years ago and it cured his AF temporarily. He had no noticeable side effects and has some complex health issues besides his heart. He had to have a pacemaker in the end and seems to be good now. However, my mum went on Amiodarone and only managed about 4 weeks before she suffered terrible sickness symptoms and was so ill that she couldn't walk. She came off it and was better within the week. However, it cured her AF and she has severe stomach issues anyway [they think she probably has cancer] and so this probably affected her more than it would anyone else. It's a very toxic drug, but it seems to work well in many cases, so as long as you are careful about checking yourself for side effects and following advice, it seems to be worth a try.

[Hannalore]

I was prescribed amioderone after my first ablation as I was still in AF. It actually put me back into sinus rhythm. However as I have an underactive thyroid gland I had to stop taking it as it interfered with other medication.Hope you get things sorted out.

My best wishes .CaroleAnne

[Cabinessence]

Thanks for those comments guys. Reassuring.🥰

[riffjack846]

I've been on on Amiodarone now for over 2 years 200mgs. Prior to my ablation Dec. 2022 nothing else worked to keep me in sinus rhythm. After my ablation I eventually had to keep taking it to stay in sinus so now I'm scheduled for a second ablation. Our goal is to be off Amiodarone but no issues taking a low dose for over 2 years. Everyones different and I hope everything works out for you.

[kocoach]

I've been on amiodarone 200mg once daily for five years and had an appointment with my EP a week and a half ago, checked rest results, EKG, blood and others and he was very satisfied with how it's working. I asked him if I could come off of it and he asked me why? I told him of the horror stories from a lot of people on this forum due to it but he said mostly all you hear about is the bad reports from a few people but hardly hear of the positive reports where amiodarone is and has helped hundreds of thousands of people deal with afib. So guess what I'm going to stay on amiodarone.

[Cabinessence in reply to kocoach]

Very valid point there. If you're not experiencing problems you're less likely to pick up the pen I suppose. I've read though that when you start on this drug, you should have your ECG taken regularly. In fact, one website suggests you're kept in hospital for the first week and be monitored. My cardiologist at St Barts in London hasn't mentioned any tests whatsoever, which makes you wonder if they know what they're doing.

[kocoach in reply to Cabinessence]

I was kept in the hospital for a few days when put on amiodarone although I was there already so no big deal, But when I was on Tikosyn (dofetelide) I had to stay three days to check for any reactions the same when taken off of it. Yes, regular checkups, ( blood, ekg, heart qt intervals, eyes, basically everything to insure that medicine is working at it's optimal with no side effects. When I first joined this forum and saw people talking about amiodarone it terrified me at all the negative responses but as the long term regulars stress they are not Drs. and that is who to listen to. Hope this helps ease your apprehension about this.

[Dippy22]

I’ve been on Amiodarone for about four weeks now. I’m suffering from extremely dry eyes at night which wake me up. I have to scrabble for the eyes drops and squirt them in before I can peel my eyelids open. I’ve also started coughing too, which is a concern.

Like you, I’ve got extreme reservations about this drug; namely the raft of potential/severe side effects and the extremely long half life. I was in hospital recently and every time I told someone I’d been started on Amiodarone they pulled a “yuk” face, which told me all I needed to know.

I’m due to have my first ablation on the 22nd June and my cardiologist said he didn’t want me on it any longer than absolutely necessary. However I read somewhere that patients undergoing ablation whilst taking Amiodarone tend to have better, more successful outcomes.

PS whilst it does reduce the severity and length of the AFib episodes, it has by no means stopped them, in fact they’re coming more frequently than before I started taking it.

Sadly, unlike Rainfern, my docs don’t seem at all concerned about regular testing. I was stared on it by the hospital and I was horrified to read on the discharge paperwork than my GP was asked to test my liver and thyroid function again IN SIX MONTHS!! Are you joking!! Told my GP I wasn’t happy about that and he’s agreed to run the tests again very soon.

Oh, and in another note. I was checking the contraindications again last night and noticed it said to “warn the patient not to take stimulant laxatives”. I’m always constipated in these drugs and I wish someone had mentioned that to me. It’s shocking how no one checks what other supplements or home medications you may be taking.

[Elfiejean]

When I was diagnosed with Afib they gave me ameoderone. I researched it and was afraid. They said ablation is not for you. The 200mg daily gave me side effects that made me uncomfortable. They reduced it to 100mg daily and I can live with it. I have 8 heart stents so my heart is damaged. Reading about ablations scares me. My bloodwork is monitered and lungs checked for problems. Hope it stays this way. The pacemaker insertion was enough. For some it might be a nightmare but for me so far so good. You could give it a chance. Wish you the best.

[Blueaz]

My EP prescribed Amiodarone. It is toxic. I would tell anyone to stay away from it. The side effects are not worth it. I lost use of both arms and legs. Couldn't stand up. The EP wanted to prescribe another med similar costing $900/mo. It destroyed my body. It takes months to get it out out the system. Thankfully I stopped on my own. Listen to the body, it knows what works or doesn't work. Every drug has side effects. Thankfully cryoablation has worked for me. I am 3 weeks in. So far so good. I did get rid of the first EP doc. The new one is the best and believes in getting patients off meds if possible. I wish you the best. Do your research and listen to the body. The heart knows.

[Stato308]

Hi, I am Matt. A 55 year old based in Sydney. I have had PAF since April 2020. Electro Cardioversion done in June of that year amd stayed in NSR on Solotol 40 mg bd. PAF returned in April of this year and I was again Electro Cardioverted a few days later with a view to having PVI with radio frequency. Started amiodarone 200mg once daily in prep for the PVI and to remain on it for 3 months post treatment. I was so scared to take amiodarone, the distress of PAF was enough without ingesting amiodarone, which I saw as basically poison. I have been on amiodarone for 7 weeks now, had PVI on 10 May this year and cadiologist plans to take me off amiodarone in another 8 weeks. 200 mg once daily is a low dose in relative terms. They used big doses previously for ventricular arithymias, like 1600 mg daily! So many of the published sinister side effects won't occur on this small and short term dose of 200 mg daily. Having said that, the side effects of amiodarone I have had are unpleasant. Vivd dreams, sun sensitivity, and nasty headaches. The sleep distubance is actually the most difficult to manage. The medication is effective for me so far and provides some support whilst waiting to complete the 3 month blanking period for PVI. So far, so good! I understand your concern re amiodarone, I was so anxious when starting it but it beats having fast AF any day. I would be interested in any other people's comments re amiodarone too.

Anxiety management is now my greatest challenge. Being aware of one's thought content and using mindfulness techniques has helped. Daily exercise and meditation are non negotiable tasks.

I would like to say that I have found this forum so helpful and at times comforting. Thanks to you all most sincerely.

Matt

[Cabinessence in reply to Stato308]

Thanks Matt. Thing is I have AFib and not VF which I assume is Ventricular Fibrillation? In which case I wonder if they've given me the right thing. Yes the words "very toxic" have made me feel a tad apprehensive. I've also been told to take 3 lots of 200 per day for a week, then 2 tablets per day for the next week,then drop down to just 200mg per day thereafter, which seems like a lot to me!!

[Cabinessence in reply to Cabinessence]

Sorry I meant ventricular arrhythmia not VF. Not that I even know what the difference is🤣 And what's a PVI?

[Nakesero in reply to Cabinessence]

Hi,I've been on Amiodarone since last October prescribed by the Cardiologist 'for the short term' My local community Pharmacist phoned to basically warn me off it and when checking it out the words 'toxic' and 'poison' seemed an accurate summary and I delayed taking it for several weeks. However, it soon occurred to me that unless I started the course it was unlikely that further treatment (such as ablation) would never materialize so, with enormous reluctance and foreboding I started the course. Within two weeks I was back in sinus, have had regular blood tests and absolutely no symptoms at all and had my ablation a couple of weeks ago - and am still in sinus rhythm. Yes, it is daunting and virtually every medication warns you of every complication under the sun but it worked for me and may well for you. Good luck

[Cabinessence in reply to Nakesero]

Update: So after 3 days of being on the Amiodarone and 2.5mg Bisoprolol combo, I went back into NSR this morning for the first time since February with a pulse rate of 61. Early days I know, but I haven't had a leg drop off yet!

[Cabinessence]

Forgot to add, do the side effects lessen after a while, like they do with Bisoprolol?