how long are people taking Amiodarine?

[NLGA]

I have AF amd was put on Amiodarine in May

Unfortunately I can’t have CV as it’s not persistent . I am still waiting results from my heart monitor 6 /7 weeks ago I have had a Echo cardio and echo gram plus a CT scan . My BNP was 180 . Echo showed mild mitrial regurgitation and a slightly enlarged left atrium but not hear failure .

Now my gp asked me to come off Amiodarine and stay on the brisopel but since going to half dose my AF had returned more regular

How long is it safe to stay in Amiodarine as I read it can cause other problems. I tried to ask cardio but no one returns any calls or picks up the phones at my hospital

[BobD Volunteer]

Bioprolol isa beta blocker to slow your heart if you are in AF . Amiodarone is a rhythm control drug to keep you in normal sinus rhythm. It is a highly toxic drug and should onlt be used short term Imaybe up to three months, or at very low dose. It can damage the thyroid gland and cause both lung and eye problems as well as making the skin photo sensitive ( burns easily. )

[NLGA in reply to BobD]

Kind of you to help and advise me so how do you keep in normal sinus control without it as I have no cardio appointment booked and I do t expect much from my heart monitor results as I had no AF that day . Thank You

[BobD Volunteer in reply to NLGA]

You need to speak to your doctors and get an appointment with an electrophyiologist ( a cardiologist who specialises in arrhythmias). There are othe drugs and treatments available but one thing you must understand is this.

Any and All treatment for AF is only for quality of life. It is not considered a fatal or life limiting condition and provided that rate is well controlled there is no difference in outcome whether in NSR or controlled AF. Many people in permanent AF live long happy and productive lives. Of course stroke prevention with antiocagulants is vital where appropriate as AF increases stroke risk five fold.

[NLGA in reply to BobD]

that’s really interesting and kind of you , it’s actually made me feel a little happier

[Gillybean123 in reply to BobD]

I said to my cardiologist that about not being able to take Amiodarone long term and her answer was well you are 72 so what’s long term!! I though at the time what is she trying to say.

[BobD Volunteer in reply to Gillybean123]

Rather cavalier. IMHO anything longer than three months but then I read so many stories here of people damaged by it.

[CDreamer]

I asked a similar question about my husband’s continuing to take Amiodarone and got some great answered, especially from one of the EP’s who very occasionally posts on the forum who said that the minimum maintenance dose can be helpful in maintaining NSR, after it has been established.

It’s a very difficult question and one that depends upon your individual circumstances so I think you need to push for a consult with your cardiologist and if you cannot get an appointment, write to your consultant and copy letter to your GP.

Amiodarone taken at high doses long term can cause serious damage to thyroid and lungs and make you photosensitive so stay out of sunlight but it is also the biggest gun in the armoury against AF. Have other drugs such as Flecainide been suggested or tried?

It comes down to risks v benefit assessment and really that can only really be done by your cardiologist, unless your GP is or has been cardio specialist?

Very few people take Amiodarone long term but when there is little or no alternative long term treatment, it is used as a drug of last resort.

There is no ‘safe’ time to be on a higher dose but my husband was on it for about 2 years and is now on a much lower dose without consequences so far. He is 88 and has no alternative treatment so quality of life now is priority for him.

Best wishes CD

[NLGA in reply to CDreamer]

thank you . To be honest I don’t even know who my consultant is as I saw a different doctor every time I stayed in hospital I was discharged 3 times by different people since my CV was cancelled due to not being in AF I had a monitor for a day and nothing back result wise . I am currently on 12.5mg Beta blocker Bisoprolol which is high but if I drop to 10 my AF returns

[jeanjeannie50]

I knew someone who was taking Amiodarone for about 8+ years. He hadn't read the instruction leaflet, didn't stay out of the sun and had no blood checks whatsoever in that time. He was quite horrified when he discovered he'd been forgotten by the medical profession, who suddenly took him off that drug and gave him lots of attention. The Amiodarone hadn't affected his health in the slightest, but he did die of pneumonia about 2 years later.

Me I was on that drug for about a year, it damaged my thyroid - made it underactive and I now take pills to rectify that. I've also just found out that my lungs are scarred, which is another side effect.

I'm with your GP and would say come off of the Amiodarone.

Jean

[NLGA in reply to jeanjeannie50]

thanks Jean . I can sympathise with your friend as I feel forgotten by the cardio department myself I don’t feel I have a point of contact and no matter how often I call no one returns a call

[jeanjeannie50 in reply to NLGA]

Next time you call the cardio department, say to them that you've tried many times to contact them for advice and if they don't respond you will have no option other than to speak to the hospitals PALS team. That should get them to reply to you.

[NLGA in reply to jeanjeannie50]

ok thank you

[Ellie-Ann]

my sister is now 81 and has been on amiodarone for many years, successfully.

However, because of recent scientific discoveries to do with lungs and long term use, they took her off it. She immediately went back into bad AF. Dr said sorry and puts her back onto it. She is still unwell and not right.

Apart from having to watch her skin : sunlight etc it was a life saver to her for over 20 yrs. Although she is 81 now, last year before being taken off it , she could walk any one’s legs off across the fields. Ten miles was ok for her!

I’m now on it for SIX MTHS awaiting a CV after being diagnosed with AF. almost 2 yrs ago. When I asked about the long time delay before the CV , I was told “ Its taking that long to see folk at the moment.”

I’m just hoping I’m not on it any longer than six months as it’s a nasty drug but having said that with regard to my sister I’d say “ If it ain’t broke…don’t fix it.” They messed her up really bad. She was one of its successes until they mucked her up.

Good luck with yourself….

Ellie Ann

[NLGA in reply to Ellie-Ann]

thank you , it’s very confusing as I honestly felt great for 5 weeks and now I am back to feeling breathless where I was am starting to walk 4-5 miles with no issues

[Ellie-Ann]

I’m a Walker too and I’m 75. I've had to modify my walks to 2-3 mls now and I have OS maps on line. I use it to make my own routes and me and my husband manage to walk 1 1/2 mls out….have a sit down and a coffee in a flask…then walk back to the car. We still get out for an hour or two even though I stop a lot for a breather now. It’s a “change of wallpaper” especially with all the autumn colours about now. It’s keeping me sane! Don’t give up ! Just modify what you do. The heart is a muscle it does need some gentle exercise and it’s good for your mental health and helps you cope with all the stresses of life.

Good luck.

[NLGA in reply to Ellie-Ann]

yes I really enjoy it and like you love making my own walks up but was advised to keep off the footpaths over the fields since my AF just incase emergency access is required . Took the edge off the enjoyment