Amiodorone

[dindy]

Hi. I had my 2nd Cardioversion October 2021 and then I was put on Amiodorone for just 6 months. I read all about the effects (negative ) it could cause and to be honest I was worried.They decided to leave it for one more month and now for the past 3 days I no longer take it.

In my case it was the best 7 months for me as far as any afib & how how I felt. I did not miss one heartbeat and it was rock steady all the time. When I did my 2.5 mile jog/brisk walk my bpm went up as per normal but ws still steady. I was not out of breath anymore and could go for 8 hours in garden or other work and still have the energy,just at end of day.

I have had 3 ECG`s in that time and each one was between 75-81bpm and steady. They did say they could not guarentee I will not go back into afib but I know that anyway. Not sure if I am long standing persistant or permanent as it has been well over year now.

I think if I was on amidorone for longer I could of started to get side effects but nurse said they do not like putting anyone on drug for longer than 6-7 months.

Will have to wait and see what happens as from what I rad it takes a long time to come out of your system. If I come back ointo afib I do not know what the next step will be but will cross thet bridge when I come to it

[kocoach]

Hello, I have been on Amiodarone for 5 years now and have no or very little problems at all. I asked my EP specialist before going it and he told me there are so many people on Amiodarone that are doing just fine with no problems whatsoever, but it seems all you hear about is the people that are having problems. By the way Dr. LO who is the EP I see is highly sought after in this field. Hope this helps

[Ducky2003]

I have been back on Amiodarone for a couple of years and have corneal deposits but no other issues as yet that I'm aware of. It will take a few months for it to completely exit your body, as it has a long half life so you will continue to feel the benefits of it for some time.

[jeanjeannie50]

Amiodarone damaged my thyroid, made it underactive. I detest this drug and will never keep quiet about its horrible effects, it didn't even halt my AF attacks. I'm now on medication for life to right the damage it caused.

Jean

[dindy in reply to jeanjeannie50]

Sorryto hear of your bad experience with amiodorone,that is why I was worried about what effect it would have on me. I did not want to be on it for a long time so in one way I am glad I am off it. As in other replies some have no effects and some not too bad.

On facebook there is even a group who has formed to have the drug banned as it has caused members of their family to pass away. They have got to one day develop a drug that works as well as amidorone but does not have the bad side effects.

[CDreamer in reply to dindy]

They thought they had it in Dronedarone - but they it didn’t work as well and still had similar affects. Nothing known yet. I think that as long as you are warned as to the affects and there is nothing else recommended or advised for other reasons, then it is patient’s choice. In my husband’s case there really was no other option and his prognosis was not good. I think there needs to be balance here but of course when someone dies people, get angry and want to blame

The only safe drug is no drugs. I have been harmed by Beta Blocker, Anaesthesia and antibiotics and the list of contraindicated drugs is A4 page.

I think short term, the risks are worth taking IF the drug works for you and you have very symptomatic AF to stop the arrythmia. What I don’t understand is why people continue to take powerful drugs when it doesn’t work and there seems to be quite a few who do.

[Nafi in reply to jeanjeannie50]

Jean , I had exactly the same problems. I absolutely hate the drug , awful side effects, including thyroid and stomach problems... it didn't do a lot to help my condition either . I was very grateful when I was taken off it . Every medical person I spoke to said it is very common to cause on going problems.

[jeanjeannie50 in reply to Nafi]

Do you have to take drugs for your thyroid now?

I know someone who took Amiodarone for 10 years, didn't read the leaflet so had no idea he had to keep out of the sun and didn't have one blood test in that time. They had no nasty effects on him whatsoever, he actually died of pneumonia a few years ago , think his age was probably late 70's. I'd meet him and his wife at U3A meetings and we'd talk about AF. It was one of those awful moments though, I saw his wife down the town and asked how he was and she told me he'd died a few weeks earlier. I felt so sorry for her, but she was amazingly strong, think I'd have been a weeping mess telling someone that news while in the middle of a supermarket.

[Nafi in reply to jeanjeannie50]

Yes , I still have to take meds for thyroid along with the others and they inferred I will probably always have to . I have had to really push my gp for blood tests even before covid . I have recently had test done , the first in over 2 years .

[jeanjeannie50 in reply to Nafi]

That's a long wait, thyroid blood tests are certainly meant to be more more often than that. My doctors practise was and is brilliant, they'd still see people during covid if they thought it necessary. You ring early in the morning and doc would call back in an hour or so.

[Nafi in reply to jeanjeannie50]

The whole situation has been a long battle with the gp. Totally disinterested all the way through last 3 years ...I have recently moved and hopefully it will improve but not holding my breath!

[Thomas45]

I was in Amiodarone for 10 long months. It had no good effects on my AF. Thankfully I was taken off it and put on Flecainide which worked.

[jeanjeannie50 in reply to Thomas45]

It's so strange how we all react so differently to medication. Yes, I was put on Flecainide too and it's the drug that works the best for me. My EP said to me to try and reduce my dose (was 2 x 100mg daily) even if it meant adding a bit of extra beta blocker. I wondered what he knew about Flec that I didn't. I have managed to get the dose down to 2 x 75mg daily. I'm surprised no one has done any research to see if blood type makes a difference, or something in our DNA. I guess that research wouldn't make money though.

[Thomas45 in reply to jeanjeannie50]

I started at 50mg x 2 a day, and after 2 years that had increased to 150mg x2 a day for 11 years after which I was found to be in persistent though asymptomatic AF, which I later agreed was permanent. i had no problems with Flecainide and very ew episodes. I wasn't prescribed a beta blocker until just after an operation to remove my appendix, 4 years ago. 7 weeks later I started with urticaria, a vey rare side effect, ad after a further 5 weeks had a sudden exacerbation of asthma and chest pains and spent 2 nights in hospital. I was taken off beta blockers.

[Becksagogo]

Dindy I am so pleased it worked for you. It does what it says on the tin and doesn't make you feel like you have been hit by a train. I'm afraid for me it was toxic and has affected my liver, kidneys and thyroid. My blood runs cold when I hear the word and like you I pray that future generations will benefit from research into finding an effective alternative.

Good luck with your recovery.

[CDreamer]

So pleased it worked for you. My husband has been on Amiodarone for 3 years now and no visible side affects. He reduced the dose to a maintenance dose about 12 months ago.

Unfortunately it’s a gamble as to who suffers side effects and who not but it is the most affective antiarrythmic drug available.

[Rubymurray25]

For me Dronedarone was a great replacement to Amiodarone after 7 months.

[Fullofheart]

I had the same experience as Jean and was only on it a couple of months leading up to cardioversion. It was the only drug that's ever controlled my AF successfully but I now have an underactive thyroid unfortunately. Dronedarone didn't have the same effect for me. I tolerated it well but no positive impact on rhythm.

[RussJun55]

Obviously everyone's case is unique, but based on my experience with Amiodarone, post cardioversion, I'd be optimistic. In my case, I also took it for 6 months, resumed an active lifestyle, and had over ten years free of any kind of arrhythmia issues. Good luck.

[BrotherThomas]

I've been on amiodarone for a year now with no side effects at all as far as the monitoring test results show. My own ECG measurements show hat I've been in NSR for the last 9 months at least although a hospital ECG showed AFib just before my second CV last October. A further ECG run a my GP's surgery also showed AFib in February and I'm waiting for an appointment with a cardiologist. Both instances of AFib were totally symptomless.

[MummyLuv]

I am on Amiodarone at the moment, 6 weeks pre mini maze and 3 months after. My 8 week blood test showed high liver toxicity and I have just had a follow up a week later, 9 weeks and if still high I will be taken off. Just praying no lasting damage. 🤞🤞

[DawnTX in reply to MummyLuv]

Good to see you on here I have not been on much lately. Other than the amiodarone I hope you are doing well.

[MummyLuv in reply to DawnTX]

Very well thanks Dawn, we’ve come away on holiday for the jubilee weekend.

I’ll do a wee update on Monday as that will be me a month since surgery, it has flown!

Hope you are doing ok? X

[DawnTX in reply to MummyLuv]

That’s right you had it done right after mine. I see my doctor on Monday the sixth. It has not been going well I will be honest. I had only had about three decent days and still unable to walk and breathe even across the kitchen. I’ve been very frustrated and upset. I spoke with the office they had actually wanted me to get an EKG to see if I needed possibly a different med or more this week before my doctor comes back on Monday. They are in touch with him. Of course yesterday I was going to get the EKG and it was one of the best days I have felt like going to the dentist and your tooth feels better. Maybe foolishly but I canceled the EKG and again today I feel decent better than I have since my procedure. I want to see if this will last until I see him Monday and then he can take it from there. I believe I may have Pericarditis again which I tend to get after anything. I am not a doctor but I’m pretty sure that unfortunately I recognize the pain now. I am just going to take it easy until I get to Houston on Monday.

I am hoping I turned a corner. I hope that you continue to do as well as you were doing you looked gorgeous no one would ever guess you had just come out of the hospital 😊

[MummyLuv in reply to DawnTX]

Awe Dawn, so sorry, praying for you that you have turned a corner x

[DawnTX in reply to MummyLuv]

Ty

[etheral]

I' dumbfounded that Tikosyn (dofetilide) is not available in UK and Europe. I was initially advised to take this but was reluctant to spend 3 days in the hospital which is necessary when initiating the drug. They told me the alternative was Amioderone, which after reading up on 3 days hospitalization seemed prudent. Tikosyn has no long term thyroid, lung or liver effects and has kept me in NSR for 4 years now. etheral

[DawnTX]

You were very lucky when you went on it. I had immediate problems with it before I even left the hospital. They had put a large bag of it in May while I was still in there to get me started. By the time I got home I was covered with a rash and I mean everywhere. I also felt horrible. I was constantly nauseous 24 seven whether I ate or not. All I wanted to do was curl up in a ball on the couch or the bed and that did not help either. Evidently once you are on it they really struggle and try to keep you on it for a couple of months . That was my first ablation it was a cryo-. I didn’t care if I had a fever or not I was so miserable. At the end of my third month I was with my cardiologist and begged him to take me off it and he did. He weaned me office in a week. I did well for six months than my monitor picked up some serious a fib so I needed a second ablation this time it was RF. I have been on metropolol and Multaq. I did well for 15 months. I think if last year had not been such a nightmare for me I would still be going strong unfortunately I also believe that stress really will trigger it plus I got Covid. Just a month ago I had a new procedure in Houston. It was done on the Vein of Marshall area.

The past month has been very hard I’m not going to lie. If you read anything of mine you will see I’ve had issues both walking and breathing and only had a few good days. Today and yesterday I actually had decent days. Maybe I have turned around now. The first three months they will tell you it’s possible to get a fib events and it is three months before they even consider it a failure. I was very despondent then decided I would read more. This particular procedure I had is more for the long-haul meaning 6 to 12 months. On the plus side I may become a fib free meaning also medication‘s. Only time will tell but the doctors are trying to help us. I see my surgeon Monday hopefully will learn more than and maybe I can make it to Monday with more good days than bad.

I keep reminding myself there is no cure and to be patient but when you can’t walk across your kitchen without feeling as if your heart is being crushed by a truck and about to blow up it’s pretty hard to be upbeat I know so I am very glad to see all of you here supporting each other.