Stopping Amiodorone

[DoubleEm]

After 19 months my husband has finally been taken off Amiodorone, during which time he has felt generally unwell with aching joints and extreme tiredness. However he persevered with Amiodorone as it regulated his AF throughout this time and the Consultant felt it was giving the heart the best chance of recovery.

Since coming off this medication 6 weeks ago he was hopeful there would be some gradual improvement in the aching and fatigue but he was warned that Amiodorone takes a long time to clear the system.

All blood / thyroid tests have remained in the normal range throughout and will continue to be monitored for at least the next 6 months. Another echocardiogram is scheduled for the end of January.

We would be grateful to hear from others who have stopped Amiodorone as to whether / how long before they noticed any general improvement.

[BobD Volunteer]

Never been on it long term but I understand that it can remain in the body for several months so suggest patience

[DoubleEm in reply to BobD]

Thank you for your reply. I sometimes wish I could buy patience it would be less stressful.

[Leonardo3]

Hi DoubleEm, I was only on it for 6 months, and I understand the aching joints and tiredness, I still have the symptoms 6 months later but the tiredness has got much better, I’m 58 years old and in lots of pain which I had some before taking the Amiodarone that hasn’t improved.

[DoubleEm in reply to Leonardo3]

Thanks for your reply. Sorry to hear your pain has not improved but glad your tiredness has decreased. Go well

[Leonardo3 in reply to DoubleEm]

Thankyou

[Salvatore68 in reply to DoubleEm]

What was your daily dosage of amiodarone?

[Leonardo3 in reply to Salvatore68]

Salvatore68 I was on after initial doses of 600mg cutting down to 200mg everyday.

[Salvatore68 in reply to Leonardo3]

What was your daily dosage of amiodarone?

[PJR1949]

Hello, I was on Amiodarone twice first time for about a year and the second about nine months with a year or so in between. I stopped taking it completely nearly two years ago.

I was never happy about it but my EP insisted that the effects including my thyroid being damaged permanently (my belief about the cause of this, not necessarily his) were worth it.

I’m sure it took getting on for a year to feel that there were no longer any lingering effects. My EP confirmed that this could be about right although possibly a slight exaggeration due to my visceral dislike of the drug.

Hope all goes well. Penny

[DoubleEm in reply to PJR1949]

Thanks for your reply. Did you continue to have blood test monitoring etc. after you stopped taking it completely or was the thyroid damage picked up while you were still taking it?

[Salvatore68 in reply to PJR1949]

What was your daily dosage of amiodarone?

It’s written in articles that this drug can adversely affect thyroid.

How Did you treat Your thyroid issues ?

[PJR1949 in reply to Salvatore68]

I’m afraid I can’t remember the dosage and I’m not at home so I cannot look it up for you, it was pretty average though. I now take Leverthyrox for my hypothyroidism. pjr

[PJR1949]

While I was still taking it. It was because of the problems with my thyroid that I convinced my EP that I was serious about stopping. pjr

[bennie06]

Amio has a half life of around 2 months, so your husband may still have nearly half his original dose knocking around. Hopefully things should soon improve.

Good luck.

[Polski in reply to bennie06]

I had the impression that it can be longer than that, hence the need for so much patience!

[bennie06 in reply to Polski]

Yup your right. The 2 month figure is an average guide.

[Seawalk]

I took it for 6 months, stopped it in May (without my EP!s consent). Took about 5 months to improve. Energy and tiredness levels a lot better by this December. General feel much better though pain a problem if I overdo things because of FMS.

[DoubleEm in reply to Seawalk]

Thanks for your reply. Wow 5 months! Certainly hangs about doesn't it. We'll keep our fingers crossed for some improvement. So glad you're generally feeling better. Take care

[Seawalk in reply to DoubleEm]

Thank you. I Do hope your husband improves. Good wishes.

[Salvatore68 in reply to Seawalk]

What was your daily dosage of amiodarone?

It’s written in articles that this drug can adversely affect thyroid.

How Did you treat Your thyroid issues ?

How long after you ablation did u take amiodarone? Did you stay in sinus rhythm?

[Seawalk in reply to Salvatore68]

Hi Salvatore, in answer to your questions my daily dose was as directed in Information leaflet in pack.

My thyroid was chemically ablated some years ago and so was already taking Levothyroxine. I did insist on having my TSH, T4 and T3 bloods done They were OK.

I have not had a pulmonary vein ablation.

I stopped Amiodarone early May 2019. I stayed in sinus rhythm until Oct 2919 when I had a brief episode Then another in May this year.

I do have a link reveal device inserted so that can pick up any ‘silent’ episodes.

Hope this answer your questions.

[Salvatore68 in reply to Seawalk]

I don’t know how long my dr intends for me to be on Amiodorone but the side affects are numerous and serious.

Did you remain in sinus rhythm after you stopped it?

[Ianc2]

The half life is two months, after 2 months half the dose is still there. After another 2 months a quarter of the dose remains. After another 2 months an eighth of the original dose lingers on, after another 2 months one sixteenth of the drug still lurks in your cells. It is a strange and powerful drug that lives in your cells and takes a long time to go.

[DoubleEm in reply to Ianc2]

Thank you for your reply. Just a waiting game then and hope he can stay in normal rhythm during that time.

[cuore]

I took Amiodarone after my first ablation and after my second ablation five months later. Aside from the side effects, I personally feel that it contributed to my AF. When I switched to Flecainide, I went into sinus. It was not the drug for me and I will never take it again.

[LindaDaisy]

How is your husbands AF/heart rate?

Has anyone got anything positive to say about Amiodarone?

[MRockwell in reply to LindaDaisy]

No terrible drug.... look up Amiodarone Lung toxicity should only be used for life threatening arrhythmia I was put on this in hospital for irregular heart rate was not life threatening, after being put on 800mg and let out of hospital the next day could hardly walk was back in emergency next day, now have allergic to amiodarone on my health records. High iodine loads can cause thyroid disorders was on thyroid tablets but this was over looked I'm guessing, Cardiologist are not up-to-date with the side effects of this drug.

[Salvatore68 in reply to MRockwell]

I totally agree . What was your daily dosage of amiodarone?

There are many medical articles on line stating that this drug can adversely affect thyroid, Lungs As you said.

How Did you treat Your thyroid issues ?

Did you remain in sinus rhythm after you stopped amio?

[DoubleEm]

No return of AF to date.

While he was taking Amiodorone his HR averaged about 65-70, since stopping it six weeks ago it's averaging about 72-76.

I think the one positive we can take from Amio is that it succeeded in bringing the HR back to normal limits for a prolonged period, which has been a massive relief for someone who is a perpetual "worrier" by nature.

[Salvatore68]

Hello I just had ablation and I am Now on 400 mg per day of amiodorone. I take it 2times per day

Reading the info sheet on this drug is unsettling, with all the possibilities of severe side effects. What can you share about it and how often did you have labs done? Joe

[DoubleEm in reply to Salvatore68]

Hi Joe, whilst taking Amiodorone blood tests were taken every 6 months and measured against the baseline bloods taken before discharge from hospital. CXR should be done every 12 months and again measured against one taken prior to discharge. Once off the drug it is necessary to continue having BTs and CXR for up to 1 year.

Avoiding sunlight and wearing high factor sunscreen is imperative - don't be complacent about it.

My husband took it for 19 months and throughout that period he was extremely weak and tired.

The HR remained in good rhythm and his ejection fraction (EF = the rate blood is pumped out of the heart) improved from 25 to 42.

Since stopping, the tiredness and weakness have not improved YET but he remains hopeful. HR has been behaving with no very noticeable periods of AF.

Your concern is understandable because it is a very toxic drug but also very powerful. Some people have no cause for concern whilst on it and others are not so lucky. I hope your ablation is successful and your need for Amiodorone is short-lived. Best wishes to you for the future.

[Salvatore68]

What’s this mean?

BTs and CXR f

[DoubleEm in reply to Salvatore68]

Apologies

BT = Blood Tests

CXR = Chest X Ray