Amiodarone question

[Amcech]

This is for those of you that take amiodarone. I'm wondering how long you've been taking it and what dosage? Any major side effects? My doctor wants me to start 100 mg daily. It scares me as I've read so much negative about long term use, but that it does help with rhythm control. I'm 62 (almost in November) and I don't want to be having major health issues from this med in 10 years! Guess I'm just scared. I've had 3 ablations, the last one this past May and it failed. 2 cardioversions in July and August, both only kept me in rhythm for a few days. I'm in the U.S. and most EP's don't do more than 3 ablations. He doesn't believe a 4th will help me. Thanks for any info you can give me!

[bmand]

Amiodarone it seems some people are able to tolerate the stuff. My ep said there is a protocol that you have to get 5grams in your system. He starts with 800mg for one week than 400 for a week and then 200 on going. You should check it out if that the case what is 100 going to due? That stuff is poison it made sick the so call cure was worst than the disease

[Amcech in reply to bmand]

My mistake, I'm going to be taking 200 mg daily. Thanks for your input!

[PaulaEKing in reply to bmand]

I disagree with the poison rep, I've been on it for a year, and have had no side effects that I can tell, although I may be becoming hypothyroid. I will check next month with my cardiologist. I'm just really cold all the time, but I also live in New England (USA) and it's miserable up here anyway. ha! good luck to you.

[aika]

I was on amiodarone (200mg 2x per day) for 2 months along with propofenone after a Vtac issue and my device fired multiple times. was experiencing many neurological issues and sleeplessness. I was taken off the amiodarone and am beginning to settle down now, I hope for the longer term. Everyone can react differently, but please monitor yourself and report to your doctors immediately.

[PJR1949]

Hello, apologies if this reply is too detailed but I thought you might be looking for a fullest picture, you don't need to read it, obviously.

I had a cardiac arrest in April 2013 and was in hospital for a few weeks, leaving with an ICD and taking amoidarone (200mg), bisoprolol, inspra and xarelto. I'm pretty closely monitored by my EP, about every three months, and came off the amioderone in July 2015.

(I've missed out my first ablation, sometime in 2014)

That was fine for a few months but I needed a further abalation in October 2016 which left me with Tachacardia and I am now taking amoidarone again, initially two a day, then one every other day and now one in three days.

I have been having nightmares since I started taking it, which I think are caused by this drug although I have no evidence whatever just on a reading the possible side effects but, until recently, no other problems. However about three months ago I starred to have a few problems with my thyroid thought to as a result of amoidarone but there are being managed and everything seems all right.

I have regular blood tests to check for other side effects.

I appreciate that people are wary of amoidarone and I understand why, my EP doesn't like either, but I can cope with the side effects that I have with it and am in good health and good spirits, as opposed to being dead which I could have been without my husband doing CPR and excellent medical care.

[ange1960]

I initially was on this following a failed ablation, but the plan was for 3 months maximum until my next ablation. (which then also failed) I did a very high loading dose of this drug initially and then 200mg a day. It was effective at stopping my AFIB, I felt dreadful and ill most of the time I was on the drug.

I stopped the drug 30 days ago (after being on it for 11 months & dose reduced to 100mg daily since Feb) as I was diagnosed with Cirrhosis of the Liver, due to Amiodorone toxicity. It has a half life, stays in the body for 120+ days when you stop taking it, so it continues to damage your organs for a long time. Its well known for damaging the Liver, Thyroid and lungs particularly and also causing problems with eye's and vision.

I would advise very careful consideration if you need to take this drug. The side effects can be brutal and life changing/threatening. My EP has in past said to me AFIB won't kill you. Well he's right there because the effects of the drug he prescribed to deal with it are whats going to kill me. I've got a dodgy heart, not likely to be offered a Liver Transplant. My future is not bright...! I'm only 57, and until I developed Afib 20 months ago, was fit active and worked full time.

There are strict rules in US with FDA I believe for prescribing this drug. Educate and read up all you can about it, and then decide if its for you. Also does he plan for you to stay on it permanently? It is a last chance drug, only to be taken/given when everything else has failed. Ask the questions about alternatives and then you can decide what is best for you. I wouldn't say don't take it because we have to make our own choices and decisions and I'm not your doctor, but I will say (having taken the drug) I would fight tooth and nail to prevent anyone I cared about ever being given this medication.

[Amcech in reply to ange1960]

I have fought taking it for the past years. I will give it a try. My EP wants me to take it to stop my afib so that my left atrium, which Is severely enlarged, can shrink. The plan is to stop the amiodarone when this happens. He seems to think improvement will happen on this drug. I told him it's not a long term fix, which he agreed, and that I am willing for more aggressive treatment, or to live with afib. He said that the condition my heart is in right now, we have to try to medically improve it before we can proceed. Believe me, if I have any major symptoms I'll be on it!

[Syreen]

I took it for four months & count myself lucky that it only affected my vision. Go to the Face Book group Stop Amiodarone to hear stories from people who didn't get away so easily.

[Clarrie]

My cardiologist did not recommend taking it as it has too many side effects.

[Polski]

Have you followed up all the recommended life-style changes, supplements, healthy eating etc? I would want to do all these before taking amiodarone. The healthier we are, the more likely it is that any treatment will help.

See drjohnday.com Treating AF is about dealing with the underlying issues which may be driving it.

[Amcech in reply to Polski]

I have/am. Unfortunately exercise is not something I can do much of because I have 2 knees that need replaced. I am active at work, I teach 4 year olds everyday.

[Hidden]

I quickly developed pulmonary toxicity / cryptogenic organising pneumonia on dronedarone causing a mass in one lung, that was incorrectly diagnosed. Whilst in hospital being treated for the wrong diagnosis I was given an amiodarone IV that subsequently caused a mass in the other lung. On the third admission to hospital I was correctly diagnosed and close to death. A paper on my treatment is published as Case of the Month at the Royal College of Physicians, Edinburgh. Dronedarone only differs from Amiodarone by the omission of iodine. Needless to say I cannot take either.

[Amcech in reply to Hidden]

I took dronedarone for 2 years, no side effects, but didn't control my afib.

[Kiplingharry]

On Amiodarone 100mg per Day 5 days per week without any problems and no AF. The prescribed dose was 200mg per day , which I reduced on my own volition. Since it is working my cardiologist saw no problems in reducing it. Again the drug has different outcomes for different people.

[PaulaEKing in reply to Kiplingharry]

After reading all the above, I decided to drop my own amiodarone dose to 100 mg a day, which I will inform my cardiologist when I go see him. I know one is not supposed to mess with the dosage, and I am notorious for self medicating. As a vet tech I know just enough to be annoying, but am willing to take the blame. Since I've dropped the dosage to 100 mg I feel fine, no AF at all still. I do drink beer so I really would not like to stay on it, although taking metoprolol and entresto without it didn't fix the old AF. choices, choices. I do feel hypothyroid, freezing all the time, so I really felt that this might be due to the amio. We shall see. I do not recommend that others play with their heart medication dosage themselves, it is something I should not do, but will take the blame for.

[Luludean]

Everyone reacts differently to these heart drugs . In the end hopefully we find one that suits. You have to be resolute if you think one medication really makes you feel worse. Cardiologists on the whole do not always seem able too think that the drugs they prescribe can have such varying effects. I am sure that some can think outside of the box ....

Amioderone made me so sick within 10 minutes of taking it but, I had to be on it for 6 weeks following surgery.

After months of horrible reactions to various pills ( GP was terrified of cardiologists and would not change them ) I found out that I just can't take beta blockers . It was a struggle , got tutted at and sighed at and even put on anti depressants, I finally now have a cocktail of Digoxin, Xarelto and Losartium potassium. All is well and I don't have vile nightmares , nausea and I am more active than most of my friends.

Hope you get it sorted.

[Ajitriturado]

I resisted taking amiodarone for the same reasons you cite, but eventually gave in because the ablation didn't hold and the other afib drugs didn't fix it either. It was amazing. Within 3 days (loading dose) I went into NSR. My dr gradually reduced my dose until I was taking 200mg 5 times a week, which was as low as I went. After a few years I started having trouble with breakthrough AF and would raise the dose temporarily, which seemed to fix it. Until it didn't. I started feeling sick. Then my blood test showed almost zero TSH which is a sign of hyperthyroid. Sure enough, my T3 and T4 were super high. I had to go off the amio. Levels are gradually coming down but it's taking several months. I was able to take amio about 6 years. It's really important to have regular blood tests because just because you're fine for a while, doesn't mean you always will be. I also had pulmonary function tests because amio can affect your lungs. No other problem showed up. I'm now seeing an endocrinologist and will wait to see what happens with the AF when my thyroid is back to normal. I was thinking I'd do an ablation but now I don't know. I might just decide to slow down my life a bit and smell the flowers more.

[Amcech in reply to Ajitriturado]

Thanks for the info! How old were you when you started amio?

[PaulaEKing in reply to Amcech]

I am now 55 started last year at 54. It works great for NSR, I just worry about the other crap.

[PaulaEKing in reply to Ajitriturado]

thank you so much for your input. I talked to my cardiologist's nurse, and am going in for a thyroid/cholesterol function prior to my cardio's visit. I don't want to be one of those people who see stuff on the web and do the self diagnosis stuff, but I am freezing all the time and can't seem to lose weight, etc. So, that's where I am, and I appreciate all input from everyone else!

[Ajitriturado]

68 or so.

[Amcech in reply to Ajitriturado]

Thanks! I'm 62 and really hoping that I have a normal echo in 2018 and he will take me off!

[KelliDoug]

I have been on Amiodarone for a month now as Flecainide/Bisoprolol did not control my almost daily paroxysmal AF episodes. I was started on a loading dose of 600mg for the first week, down to 400 the next week and now on 200 mg a day. Sadly, it hasn't made a bit of difference in my AF episodes, but I do feel a heck of a lot better than being on the bisprolol/Flecainide combo with made me brain fogged and exhausted.

Now wondering if I should even be on the Amiodarone as it doesn't appear to be working either? Will pose this question to my EP. Currently on the waiting list for an ablation. Best of health to you all. Kelli

[Amcech in reply to KelliDoug]

Thanks for the info! My EP decided not to load me, so started with 200 mg daily. He said it would take longer to building in my system but I should tolerate it better. I'm just feeling more tired and my feet are cold. I do plan to call on Tuesday when he's in the office to see if he will lower my coreg dosage since my HR is running in the 50's since starting the amio.

[PaulaEKing]

So, I just got the results from bloodwork that I had done by my primary care physician. Yes indeed, the amiodarone has caused my thyroid to be damaged. I am glad I listened to everyone's advice here. I go see my cardiologist next week. I have all the symptoms of AIH, which even though gives you a high thyroid level, the feeling is hypothyroid. I have zero tolerance to cold, am tired, lethargic all the time, cannot lose anyweight, have had constipation for the first time in my life, etc. I did cut myself down from 200 to 100 mg a day, and am hoping to get down further. It does work very well on my AF but, sheesh, not if it's going to kill me! I find it interesting that never once did my cardiologist mention that it is not safe to take. Thank you everyone.