New here so hope ok to ask following
I would like to know more about Amiodarone as have reservations having researched it.
Any experience most welcome (yes understand we are all different and yes trying to get cardio team to give more info re significat change to last treatment plan!)
thank you all and good luck to us all
E.
I had heart failure and amiodarone was one of the many drugs I was prescribed after cardio version. After three years I had to stop because it caused thyroid issues. Although I had blood tests every three months, it wasn’t one of the things they were monitoring. I had to take an alternative which was unfortunately not as effective and the arrhythmia returned. Amiodarone is a very effective drug but make sure you’re being monitored carefully
HelloI have literally started this drug as of Wednesday, this was following my second ICD shock in three months due to VT. So far so good, no effects that I'm aware of but maybe it is early days. My doses are three times a day for the first week, then twice a day for the second week and then one each morning thereafter.
Like yourself, I did a bit of googling and wasn't too keen on what I read, however, after posting on two Facebook groups for cardiomyopathy and asking about experiences, I was quite reassured to hear how good this drug is and a lot of people saying they were okay with no ill side effects. There were some comments where people had been on the drug for upto eight years with close checks
I know it's early days for me, but if it stops my VT and I can get my driving licence back, I'm definitely going to stick with it. It does have a reputation for some serious side effects, but everyone is different as you say.
I'm also still taking my usual cocktail of drugs Carvedilol, Rampril, Eplerenone, and Dapagliflozin which I did think my body would struggle with yet another pill, but all good so far
I had Atrial flutter after mitral valve repair about 6 years ago. I was put in Amiodarone to try to fix it, but after a couple of months I was still in flutter, so had a catheter ablation which fixed things. I stayed on Amiodarone for a few more months.
No symptoms, but I was aware it’s a dangerous drug. It came out in the 60s I think as a wonder drug, but there were too many negative consequences, so it’s used very specifically.
The other thing to note is it stays in your system for months after stopping taking it. I suspect it masked the mild heart failure I now have.
So I had no symptoms, but was aware it’s a nasty drug. I trusted my cardiologists, so just went with it. I was at Hammersmith Hospital.
hi I was on amiodarone for about 2 years I did keep my heat under control but I had to stop taking it as it gave me a over active thyroid which was off the scale and made me fill I’ll. also I could not go in the sun I could feel the sun burning me though my clothes. I had to go on a higher dose of bisoprolol. Hope you get on with it ok
had amiodarone after 3x heart bypass my HR went up to 170. It was very effective. I was told by my surgeon the LONGEST you should be on it is 8 weeks. Anyhow, HR sorted out in 48 hours and bypass was a huge success. Fast forward six months and routine follow up blood test and my TSH was 100+ ( normal level is 3.5-5.5) and T4 was 4.4. In other words my thyroid was completely destroyed. I checked the side effects and in 3% of cases this is what happens. I’m now on levothyroxine an artificial hormone for the rest of my life to supplement my now useless thyroid. This is also a particularly nasty drug and it’s taken months to get get my levels just right. It’s almost 6 months on levothyroxine and I’m just starting to feel ok again. Be very careful on amiodarone and make sure your thyroid function is checked after being on it. Like I said I was told a max of 8 weeks. Hope it’s not put you off too much
Horrid drug due to side effects. I was only on it for 3 months but any exercise or need to concentrate on holding something and my hands would develop a tremor. I had, on occasion, to be fed as I couldn’t use a knife and fork.
I was on it for about 9 months after being told I should only be on it for 3. In the end different Drs said you can be on it for years so therefore I shouldn’t worry too much about that. One thing- I was on it in the summer and it’s horrendous in the sun. Even with lotion and hats and trying to keep in the shade etc my skin felt like it was burning every night. I was glad I’m to get off it. (I went on it because of following afib after CABG). I think the Drs overreacted.
As you say we are all different and respond differently. I've been prescribed the drug on three occasions all whilst suffering bouts of Arterial Fibrillation and waiting for cardioversion. Each time whilst taking the drug my heart has returned to sinus rhythm avoiding the need for cardioversion, though I have had two ablation procedures to avoid further AFib. The medication was prescribed short term for me and there seemed to be no detrimental side effects but I am aware this is a strong drug with possible long term use impact on the body. Good luck.
I was on it for six months to fix pericarditis and it worked. Three years of having this painful disorder and lots of meds. I had no problems on it at all, but was told I was only to be on it for six months. Hope this helps.
Hi! I would just say to chase up your GP for regular blood tests if they’re a bit lax like mine was!
After six weeks I did go back into sinus rhythm. That was fortunate for me because after six weeks I was told to stop because it was affecting my thyroid and gave me extended QT intervals- whatever they are!
Really strong stuff. Some folks tolerate it better than others. Realised it’s potency when my finger nails started to turn brown.
Afterwards I stay in NSR for about 6 months.
Some years back I was on Amiodarone and had great thyroid problem, could not stay in the sun and Doc stopped them immediately. Had to take thyroxine meds for about 3 months to recover my thyroid function.
Hello there. Had underactive thyroid for years and currently on 50mg per day. Have AFib/Multiple arrhythmias and after unsuccessful Ablation had IV loading dose. After 10 day stay in hospital was sent home on 200mg per day. This was reduced to 100mg after 3 months. Unfortunately I have been told they cannot increase it up again, but yes, you burn very quickly in the sun. Cardiology advised it was the only drug keeping my heart in NSR, but to date my AFib/Arrhythmias breaking through on a daily basis now. Had another holter monitor this week for 2 days and awaiting results. I understand from my own and others information that this isn't very pleasant drug but I had no alternative at the time so was more than happy to start dose. Just like other medications it doesn't work for everyone, but it would be reassuring to know that our local surgeries do take regular blood tests, but I know mine are a bit 'lax' on regular check ups for blood tests. Take care.
I have Dilated Cardiomyopathy and Amiodarone saved my life after I was diagnosed and in ICU. I took it for 9 months until I got the first side effects (skin sensitivity; my skin couldn't cope with any light when I was outside). By then my EF had improved, and Amiodarone got reduced and later ended.
If you need Amiodarone, it's heaven sent, but yes, it's also quite a drug but if you need it, you need it.
My mum was given this via canula 5 weeks ago. She now has superficial thrombophlebitis.
Was put on it for repeated VT. Cardioversion only worked temporarily and amiodarone finally got it under control after IV loading. My ICD still needed to pace me out of VT on a regular basis so was given an ablation. Now VT free, kept on amiodarone for six months post ablation with no side effects. Now off it and VT free. Very effective drug and a life saver for me, just need regular bloods, good luck!
I’ll start by saying amiodarone did what it was supposed to do—got me out of atrial tachycardia—but it’s the worst drug I’ve ever taken in terms of side effects.
It got me out of atrial tachycardia (120-140bpm) and in two days got me INTO bradycardia (39-52bpm) — for six weeks, at which point I made my case for quitting it to my EP. He acceded. I believe I would have quit it on my own if he had not.
While on amiodarone and in drug-induced bradycardia, I felt like a wrung out dish rag. “Fatigue” doesn’t begin to describe the feeling of being empty of energy and life force. A zombie.
From research I learned that AntiArrhythmicDrugs (AAD’s) have zero effect post-ablation on whether a person will revert to afib at 6 months. In other words, while taking it, a person might stay out of afib, but after they stop taking it, their having taken it does not effect a reversion to afib.
Here’s the killer research stat: The rates of reversion at 6 months are the same for those who DID take an AAD and those who DID NOT take an AAD.
In other words, amiodarone cures nothing and has no longterm effect. What it does do get a person out of afib, a chemical cardioversion, and keeps patients from needing electrocardioversions while they are taking it and keeps them out of the hospital. Those stats make it look like a “good drug.” I think it is a horrible drug. Give me an electrocardioversion any day over amiodarone!
Amiodarone works by slowing nerve impulses to your heart.
Think about that. It slows nerve impulses…to your heart, brain, liver, eyes, kidneys, muscles—all body parts. That’s why the side effects are so horrendous, especially if it’s taken longterm. But even short term, my cognitive function declined, my muscles got weak, my whole adrenal complex system got sluggish, my cells weren’t getting the regular nutrition they needed in order to do their jobs, etc.
So it does what cardiologists want in terms of the heart (controls the nerve impulses)—but compromises the functioning of all bodily systems, systems that depend on nerve impulses and nutrition from adequate blood flow to do their jobs.
My amiodarone story:
I had a second ablation for atypical atrial flutter. During that ablation, I also had a Watchman implanted. I was not in afib prior to the ablation, just flutter. Immediately after the ablation I went into over-the-top afib and tach at 170+bpm. My heart went bonkers after the ablation. Within a day I was in the ER, where I had a CV by people who did not know what they were doing and did not listen to me (I’d already had a half dozen). The CV didn’t “work,” hence the decision to try amiodarone.
I stayed on it for 45 days, until a TEE showed my Watchman was in great shape. At that point, my EP agreed to my stopping it.
Two months of NSR later, I went into AT again despite the metropolol or diltiazem, and had a CV. Five days after that, I reverted to AT and in another week or so I had yet another CV. The Afib Carnival was in full, flashy business.
At that point I told my EP I saw only two choices—and drugs were not one of the choices. The two were:
1) a third ablation
2) a pacemaker
Together we chose the pacemaker and AV node ablation. That was 3 months ago, and I’m delighted. I feel good and am off all drugs (except baby aspirin —but compared to amiodarone, aspirin barely counts as a “drug”).
Wild horses couldn’t get me to take amiodarone again but fortunately with a Watchman and a pacemaker, I have a well-behaved heart that performs its job beautifully. I feel good. The Afib Carnival has left town .
I believe your reservations about amiodarone are well-founded. Be sure to ask Why? and How does it work? and For how long? and What are my other options?—among any other questions you have from your research. My EP respected me for the research I did and my presentation of my findings. I hope your doctor also appreciates a well-informed patient. Good luck!
Hi,
I was on Amiodarone for nearly 3 years without issue. The problems started when I came off the Amiodarone. A few months after I started with an Overactive Thyroid (Lost 10 Kg and couldn’t sleep). This was addressed with medication (pill) and things returned to normal.
Following a shock from my ICD I was put back on Amiodarone and started with an underactive thyroid. I now have an underactive thyroid which is being treated by medication and things appear to be stable now.
I’ve not had any other side effects and now being monitored by Endocrinology as well as the Heart Team.
Hope that helps.
My experience with amiodarone was positive. I think you maybe base your decision on the overall statistics (such as clinicians have access to) rather than anecdotal evidence like you will get on a forum, unless you get 1000 replies! Personally speaking it did the job (clearing post op AF) quickly. I was kept on it for 8 months as a precaution, I had no noticeable side effects including thyroid or sun. Not everyone's experience obviously.
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