A cautionary tale about Amiodarone

[Maggimunro]

My mountain climbing, fit a s a flea, 76 year old brother was told he had Afib during a routine health check. He was asymptotic but immediately medicated with amiodarone and Apixiban.

Due to the pandemic his scheduled ablation was postponed until earlier this year. Strangely enough his cardiologist kept him on the drug regime, including the Amiodarone, after his procedure. In May he just didn’t feel right but was told to carry on taking the meds.

He has now been in hospital for 13 days having been miss diagnosed twice as a chest infection and given heavy duty antibiotics.

He is now on a massive dose of steroids because he has interstitial pneumonitis, which is an irreversible inflammatory condition of the lungs. This is a well known and often fatal side effect of Amiodarone, which is usually only used for severe, life threatening.

To say we are devastated is an understatement. Has anybody out there developed this condition after taking Amiodarone and if so, how are you coping?

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So sorry to hear this about your brother, let’s hope he makes a full recovery from his ordeal. We hear that Amiodarone is probably the most effective rhythm drug currently available but for some, it can have very serious side effects so it’s good that you have made folk aware of your brother’s experiences. On the forum we try to make people aware of the serious side effects which can impact on patients and we know that the majority of Doctors try to limit its use whenever possible to supporting regular heart rhythm either side of an ablation or cardioversion.

Ironically, we also know that some patients have been taking this drug for long periods of time without any problems or difficulties which reinforces the argument that we are all different!

Best wishes to your brother…….

[BobD Volunteer]

Sad story and great sympathy. Another reason why I always suggest that amiodarone be only used short term ie less than three months and why we must all be our own advocates where AF and it's treatment is concerned

[Vince1001 in reply to BobD]

Hi Bob,

Just wondered if your comment on short term use also applies to the amiodarone offshoot med , dronedarone?

Thanks!

[BobD Volunteer in reply to Vince1001]

Dronadarone (Multaq) does not have iodine in it so is not toxic like amiodarone and can be used long term provided the usual blood tests for lver and kidney function are followed.

[Adalaide2020]

Hello. Just want to wish your brother a speedy recovery. Cant be easy for him having been so fit 🌻

[irene75359]

I am horrified that the first drug your brother was given was amiodarone. I know it is useful when all other drugs fail and some tolerate it very well. But after reading some of the horror stories on here I added 'no amiodarone' to my medical records on my mobile. My sympathy to you all and I wish your brother all the very best.

[Maggimunro in reply to irene75359]

Thank you for your sympathy. I am literally waiting for the phone to ring.

It is doubly upsetting because he lives in south west France and getting there isa bit of a risk at the moment. We hope to be able to go across the first week in September.

[andyk0001]

My partner (73) is on Amiodorone and Apixiban without any symptoms so far. All the best to your brother.

[Desanthony]

So sorry to hear this. I do hope your brother recovers well. I was on amiodorone only for a short while before and after my second cardioversion - generally this is only a short term medication and your brother should have been having regular blood tests while he was on the medication. I had no side effects other than a slightly raised thyroid level at the time I was when I was due to come off the medication anyway and this righted itself within 3 months.

Best wishes to you and your brother.

[Maggimunro in reply to Desanthony]

Thanks for your good wishes

[gemma29806]

I also am on amiodorone. I asked to come of it because of a cough and bad pains in stomach. I was put for a chest X-ray, an ultra scan a blood test and a ct scan. Now I’ve to get another blood test for my liver and I’m still on it. Nightmare.

[Maggimunro in reply to gemma29806]

Don’t let them fob you off. Your lung and thyroid functions need to be thoroughly tested.

[Maggimunro]

How very sad. It is some weeks since I reported my brother’s experience and quite coincidentally I have just spoken to him. He can now walk 7 k, which may sound marvellous to many on this group but he would previously happily walk 20k in the Pyrenees. So he is frustrated at his slow progress. I think he is jolly lucky to be recovering at all.

[NannyNooNoo in reply to Maggimunro]

My husband developed ILD after taking Amiodarone. This was a couple of years ago; he stopped taking it straight away. He still has regular respiratory appointments, lung function tests and CT scans, but no longer takes the steroids. He does get a little ‘breathy’, but we’re not sure if that’s caused by the lungs or AF! He’s going for his 2nd ablation on Thursday. He looks after our garden, walks regularly (sometimes further than others lol); and does most of the housework/cooking (he’s retired, I’m still working). So much better than I initially thought it would be during the period of initial shock - could be sooooo much worse!