Told to stop Amiodarone immediately. - Atrial Fibrillati...

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Told to stop Amiodarone immediately.

Slidingdoors99 profile image
46 Replies

Today I had a letter from the hospital saying that I should stop taking Amiodarone straight away.

Last week I rang my GP to ask for an ECG because I felt that I was back in sinus rhythm (my BP machine supported this)

I began Amiodarone on 19th January and I’m sure that it did the trick in that way.

The problem is that the ECG has picked up that I now have prolonged QT lapses, which according to what I’ve read is serious.

Had anyone else had this and if so how long after stopping the Amiodarone should I expect this QT problem to go away?

I really hope that I won’t go back into AFib now....

I wonder what would’ve happened if I hadn’t requested the ECG?!

Thank you in advance for any welcome replies.

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46 Replies
Mickey16 profile image
Mickey16

Hi Slidingdoors99, Glad you followed up on how you were feeling. I do not know anything about prolonged QT lapses, but wish you feel better very soon, now that you have ceased Amiodarone. Best wishes,

Mickey16

Slidingdoors99 profile image
Slidingdoors99 in reply to Mickey16

Thank you so very much Mickey. 🙂

etheral profile image
etheral

I assume you mean prolonged Q-T interval. This could lead to ventricular tachycardia or ventricular fibrillation, which is potentially fatal. After stopping the amioderone this should return to normal. If the Afib returns you will have to rely on other measures to control it. It is hard to say when the effects will wear off as the half life of amioderone is quite long.

Slidingdoors99 profile image
Slidingdoors99 in reply to etheral

Yes I did! What an idiot I am! Thank you for your reply. I read about the dangers of QT intervals so was surprised to get a letter and not a same day telephone call.😒

It may take months for Amiodarone to reach steady state levels and months for it to clear from the body. Following that logic, your AFib may not recur for a while. If you are particularly worried about your prolonged QT interval, you could send occasional Kardia strips to your cardio.

Slidingdoors99 profile image
Slidingdoors99 in reply to

Thank you Badger. My letter said that I will be contacted by cardiology soon.I don’t have a Kardia machine!

CDreamer profile image
CDreamer

Hi and so sorry this happened to you. Haven’t much to add to the other excellent replies you have received except to say - thank goodness you pushed for an ECG.

I would echo Badger’s suggestion to ask your specialist if remote monitoring with something like a Kardia - you can buy one through the AFA Association - would be sensible. It’s certainly what I used to do when I had concerns and I always took in a monthly report when I had a physical appointment. My specialist found them very helpful.

Best wishes.

Chris147 profile image
Chris147 in reply to CDreamer

I have no idea what is QT interval. I am on Flecainide so hope this is safe. Than you

Finvola profile image
Finvola in reply to Chris147

Chris, I'm on Flecainide too and the QT interval is something my cardiologist keeps an eye on in my ECGs. It is a measurement of the time taken for the cardiac cycle to go from one state (Q) in your pumping chambers to another (T). Anti-arrhythmic drugs have a tendency to prolong this state (by milliseconds only) and Flecainide has lengthened my interval very slightly. The measurement used to determine safe limits takes heart rate into account and is known as QTc. Usually you can see the stats at the bottom right of your ECG.

Slidingdoors99 profile image
Slidingdoors99 in reply to Finvola

You explain that very well. Thank you Finvola.

Slidingdoors99 profile image
Slidingdoors99 in reply to Chris147

Hi Chris. I have read that it’s more dangerous than being in AFib.😥

Slidingdoors99 profile image
Slidingdoors99 in reply to CDreamer

Thank you. In this AFIb journey I have spoken once on the phone to a cardiologist but never in person!

meadfoot profile image
meadfoot

It certainly shows how we should always listen to what our body is telling us and act on it. Clearly your heart was giving you some clear direction and thank goodness you acted on it.

I cant help on the amiodarone front just wanted to wish you well. Its a lesson to us all to listen to what our body is saying. Best wishes snd i hope you find a suitable alternative med to keep you in NSR.

Slidingdoors99 profile image
Slidingdoors99 in reply to meadfoot

Thank you so much Meadfoot. I must admit that for the first time I’m disappointed in my care by the hospital.

I rang my GP to ask for blood tests last month which showed my thyroid was being affected by the amiodarone and my sugar levels were high... This time I rang (as you know) to ask for the ECG.

I thought that the hospital (who prescribed the amiodarone should have kept a close eye on me. They know what a toxic drug it is!

meadfoot profile image
meadfoot in reply to Slidingdoors99

Its often a minefield to have to pick our way through, sadly. I am sure you will persevere and get back on track. I so hope you get the support you need now without much further hassle. Best wishes.

Slidingdoors99 profile image
Slidingdoors99 in reply to meadfoot

Thank you very much.

Desanthony profile image
Desanthony

That was lucky. Glad you followed things up. It may take a while for the amiodorone to clear from your body but hopefully it will slowly clear and little by little you will get better. I was on amiodorone for 3 weeks before and 3 weeks after my second CV and at the time I was due to come off had a blood test which showed my thyroid levels had gone up slightly these, thankfully had gone down and were very close to normal levels by the next blood test after 3 months and by the second blood test were within normal range but the Cardio kept watching the levels for a year - had my last 3 monthly blood test in August. The Cardio said I should go onto annual blood tests but my GP has put me on 6 monthly blood tests for a while. I feel I am being well looked after there. Other than the thyroid levels I had no other side effects from the amiodorone so glad I wasn't going to be kept on it longer.

Slidingdoors99 profile image
Slidingdoors99 in reply to Desanthony

I’m so happy for you, that’s great news!Are you still in NSR and can I ask what pills you’re on now?

Desanthony profile image
Desanthony in reply to Slidingdoors99

I am only on apixaban now. Since then I have had another CV my 3rd which has kept me in NSR for over a year - 1 year and 6 weeks actually.

Slidingdoors99 profile image
Slidingdoors99 in reply to Desanthony

That’s really good!

Palpman profile image
Palpman

What is your QT interval? If you know this then you can calculate your QTc with your heart rate which is the figure you need to know.

Above 480ms would be a worry but not too serious.

Mine was 477ms but I was taking Flecainide and Sertraline together. Both increase QT so I had to stop the Sertraline.

QTc is printed on the ECG in ms.

Slidingdoors99 profile image
Slidingdoors99 in reply to Palpman

Thank you very much for your reply. The letter from the cardiologist to my GP (which I also received) didn’t say, which I thought was odd. It just said my normal QT should be 490ms!

cbsrbpm profile image
cbsrbpm in reply to Palpman

Do you know if this shows on a Kardia 6 lead trace. I am taking Dronedarone and Sertraline so am now worried. Just had my call from EP last week so sure it must be ok at the moment but would like to know for future and how to calculate this bearing in mind I am a complete greenhorn.

CDreamer profile image
CDreamer in reply to cbsrbpm

It won’t show a number but if you print it out you can get a ruler & calculate it - that’s what my EP did with my Kardia print outs.

Finvola profile image
Finvola

Your experience really brings home why we must act on our knowledge of our own symptoms. Well done indeed.

I can't comment on Amiodarone but all anti-arrythmic drugs have this ability and many on Flecainide (I for one) have slightly prolonged QT which consultants keep an eye on.

Slidingdoors99 profile image
Slidingdoors99 in reply to Finvola

Thank you. I know. I live alone and something awful could have happened to me... There were no hospital check ups or doctors check ups in my diary for any dates in the future!

I’ve always believed that the medical profession care a lot about my health, but I care about it even more!! 🙂

Palpman profile image
Palpman

Hypokalemia, hypocalcemia and hypo magnesia can cause LQTS. Low electrolytes such as above together with Amiodarone will attenuate QTc.

I don't see where your GP gets a value of 490ms to be normal while normal is actually less than 450ms.

Slidingdoors99 profile image
Slidingdoors99 in reply to Palpman

I don’t know either! The letter was from a cardiologist as well! 🧐

Visigoth profile image
Visigoth

Hi - I’ve been on amiodarone for two and a half weeks and am terrified by your post! I knew about the dangers of thyroid or liver problems down the line but knew nothing about any effects on the Q-T interval. I have a little Viatom recorder but have no idea what I should be looking for. Normally I check my rhythm on the FibriCheck app and have been delighted that it has gone back to being regular since a few days into amiodarone. Does anyone know if it would pick up the Q-T problem? Other than that I’ve felt a bit weird lots of days - bit sick/stomach churned up type of feeling plus a bit weak and shaky - but I assumed these were side effects and have been hoping that they would settle down once I’m on the maintenance dose. One other thing I’ve noticed is that my resting heart rate, which for a long time has been low 50s, is now sometimes in the 40s. Could this represent a Q-T problem? Thanks for any advice from anyone!

Palpman profile image
Palpman in reply to Visigoth

QT is the time interval as measured on the trace.Slow heartbeat will increase QT while fast heartbeat will shorten it. Normal QT will be at a heartbeat of 60.

QTc is a calculated measurement that takes the difference in heart rates into account.

The QTc Calculator App on Playstore is what I use.

You need to measure the distance from the start of Q to the very end of T. Convert this to time in ms.

Enter this number plus your hear rate and it will give you QTc.

If your heart rate is 60 then you have no need to calculate it.

Visigoth profile image
Visigoth in reply to Palpman

Thank you so much - I will download that app and follow your instructions!

Slidingdoors99 profile image
Slidingdoors99 in reply to Palpman

You are very much more knowledgeable than I am. However, my resting pulse is 66 (Before it was anything between 90-140) 🧐

Mickey16 profile image
Mickey16 in reply to Visigoth

Hi Visigoth, if your heart rate is going down into the 40's that could well make you feel a bit weak and shaky. Myself, I would mention this to your practitioner. As an aside, have you ever been diagnosed or suggested that you may have Bradycardia as a resting heart rate of 60 bpm is considered "normal" although there are people who have heart rates that are lower than this eg Athletes..... If you have a history of Bradycardia, Amiodarone is not generally recommended. (Please check the information sheet that comes with Amiodarone medication). Kind regards.

Visigoth profile image
Visigoth in reply to Mickey16

Thank you so much for your reply. I think perhaps I need to contact my cardiologist again. It was because of the low heart rate that he ruled out beta blockers so I thought the amiodarone would be ok!

Mickey16 profile image
Mickey16 in reply to Visigoth

Amiodarone is contra-indicated for Bradycardia, Visigoth. I had/have a history of Bradycardia and Amiodarone unfortunately did not do me any good...... Sometimes things can get missed, or not fully understood.

Visigoth profile image
Visigoth in reply to Mickey16

Thanks - I have an appointment coming up soon so I shall raise this

Slidingdoors99 profile image
Slidingdoors99 in reply to Visigoth

Please try not to worry and fantastic news that the amiodarone has put you back into sinus rhythm so quickly.I would just book in an ECG with your GP so they can check for you.

Visigoth profile image
Visigoth in reply to Slidingdoors99

Thank you - I will

Becksagogo profile image
Becksagogo

Oh dear. Amiodarone rears it's ugly head again. The problem is , it does do what it says on the tin but it can be toxic to some people and therefore it's not always a good idea to be on it long term. I hate the drug which I was on for a few months. It had the desired effect keeping my rythmn stable but it took out my thyroid, liver and kidneys in the process. Having said that if you looked at the possible side effects of most medication, you wouldn't touch it!

Slidingdoors99 profile image
Slidingdoors99 in reply to Becksagogo

Yes, exactly! I managed it for 6 weeks! It did change me from AFib to NSR but the prolonged QT thing is so dangerous.

I’m so sorry that all the organs you mentioned were affected.

How are you now?

There must be another drug that can keep my heart beating to the right tune?!

Becksagogo profile image
Becksagogo

I've said this so many times but it's true. My HF Nurse says we are like a finely tuned Ferrari. So why are there days when I feel like a clapped out Ford Cortina? I am on Bisoprolol now. A low dose but not everyone can take that. I was put on Ivabradine for a while and was really ill pleading to come off it. We seem to have most things under control but for me personally it has taken 4 years to get to this stage.

I have had an aversion, ablation, pace maker fitted and 4 replacement valves. I also have an inhaler for COPD. I admit to getting very jealous when I read about those lucky people that just seem to get better and lead a full and active life.

Your Consultant and HF nurse at the hospital should be able to help you to get the treatment that suits you. Good luck.

Slidingdoors99 profile image
Slidingdoors99 in reply to Becksagogo

Thank you for your reply and I’m sorry that you’ve been through so much during such a long time. On top of that you’ve got your lung condition to put up with!I hope and pray that something will happen and you’ll feel better really soon.

Becksagogo profile image
Becksagogo

Thank you. I hope you get your medication sorted soon.

Nightmare2 profile image
Nightmare2

My husband has to stop Amiodorone, but has to go into hospital for 14 days on 3 drips a day as this drug stays in the average body for anything up to 6 months, and cannot be stopped cold turkey he has been told. Very potent and I think dangerous drug, i am glad they re weaning him off it.

Jalia profile image
Jalia in reply to Nightmare2

I was on Amiodarone for about 18 months.....this was 25+ years ago.....and after a consultation with consultant at a London hospital was sent a message to stop taking Amiodarone immediately and transfer to another anti arrhythmic , Disopyramide. I did query coming off it abruptly so it was agreed I could taper off over a week or so.

Slidingdoors99 profile image
Slidingdoors99

Oh yes! My hospital referred to it as ‘The last tool in the tool box!’ 😳

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