Use of Amiodarone : I have numerous... - Atrial Fibrillati...

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Use of Amiodarone

23 Replies

I have numerous other illnesses added to my permanent AF for which I have had 2 cardioversions. I was on the EP list and my Bisoprolol was increased but stayed in AF, had the cardioversion and was advised to start on Amiodarone rather than go straight for an ablation.

In Nov 2015 I started the drug, my eyesight is much worse and the lights at night are really bad so the optician has given me yellow lenses to counteract. I have headaches, my gait has become very poor, I have had some problem swallowing food and they have found some slight problems with the alveoli and bronchioles in my lungs.

Having read the information sheet on the drug these problems are mentioned, is there another drug that will keep me out of AF but without the side effects? I am at the GP next week and wanted some idea of what to say

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23 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Yorkie

Yes, Flecainide is a popular drug to use along with a small dose of beta blocker, but I don't think your GP can prescribe it. I think it has to be a cardiologist or EP.

Jean

in reply to jeanjeannie50

Thanks Jeanjeannie.

My 12 month visit to cardiology should have been January but I have been told it will be July or later. To get to see them earlier I have to go to the GP and he can ask for a 2 week appt.

higgy52 profile image
higgy52

iv'e been on Amiodarone for nearly 2 and half years, hoping to come off it soon, but i said that nearly 2 year ago. had head ache every day for nearly 2 years so it could be down to Amiodarone or over active thyroid it's given me

in reply to higgy52

Same timeframe as myself and I missed off my list the overactive thyroid that you also have.

higgy52 profile image
higgy52 in reply to

Yes it crops up on this forum a lot Amiodarone and Thyroid problems, makes you wounder with it's worth taking it, it's men't to help your heart but damages other parts of body

Maeven profile image
Maeven in reply to higgy52

My husband has 3 nodules on his thyroid because of amiodarone

in reply to Maeven

Sorry to hear that.

Maeven profile image
Maeven in reply to Maeven

My husband is also in permanent A Fib. He takes entresto he also has heart failure dilated cardiomyopathy and LBBB. This all started in September 2017. He is 73

in reply to Maeven

Thanks for the added info. I’m not yet 60 so want to try and live a bit longer yet

etheral profile image
etheral

Ask about Tikpsyn(dofetilide). I had a cardioversipn and only maintained NSR for a few days Then I was put on amioderone in anticipation of another one but couldn't tolerate it. I was then placed on Tikpsyn while being monitored in the hospital and have bee on without side effects for lmp

in reply to etheral

Thank you etheral

etheral profile image
etheral

Almost ayear. Good luck.

eric179 profile image
eric179

Hi Yorkie

I was told that Amiodarone is only used as a last resort, after other drugs have not worked

This is a terrible drug, and would come off it as soon as possible, lots of info on the American Web site

I was put on this when i had a Aortic Valve replacement, and then had A.F.

I had serious memory loss, hair loss, kept forgetting what i was doing etc

So stopped taking and went on to Candesartan, fine, still have A.F. but no side effects

Eric

in reply to eric179

Thanks Eric. I can definitely relate to forgetting things and saying what i know are the wrong words as soon as I say them.

ILowe profile image
ILowe

As jeanjeanie50 said, flecainide + low dose bisoprolol is a common alternative. Only hospital staff can start you off on flecainide, because there are existing conditions in the heart where it is possibly dangerous, and some rare people have bad reactions, so it is for the heart specialists to initiate it.

But, it is in our power as patients to check on the doctors and ask questions. Because amiodarone takes a long time to get out of the body, for a year or more after you have stopped amiodarone you have to consider drug interactions. This means, you must ask about them, since some doctors forget, and others are blasé. The literature I have seen says a dose reduction of 50% in flecainide, and 30% in bisoprolol. Frankly, it is dodgy work getting it right, especially if you do not know what the best dosage -- pre-amiodarone -- is for you. I speak from experience.

in reply to ILowe

Thanks ILowe

exbcmc profile image
exbcmc

Yorkie, I swear I have the same side effects....

exbcmc

Sorry to hear that. From what I am reading it’s not very good. There is a Facebook page ‘Stop Amiodarone’ and other forums where this drug is discussed.

Afibagain profile image
Afibagain

Yorkie,

Hang in there, I have been on Amiodarone for 4 + yrs. taking up and down doses in between cardioversions. I have been on 100mg. per day the last year. a reduction from 200mg. per day. EP has performed 5 cardioversions and 2 ablations over the last 6 yrs. I went in a couple weeks ago, back in Afib again EP put me back on Eliquis and increased the Amiodarone to 400mg. a day. I am to do this regiment for 3 weeks and go in for a cardioversion if unsuccessful another ablation will follow. I wish there is something else than Amiodarone, but the EP says he has had me on other meds that didn't work. I currently have no energy, shortness of breath, liver functions are getting worse and gained 30 pounds in the last 1 1/2 year. I am optimistic about the cardioversion working so at least I can gain more energy to get some physical exercise and burn off some pounds HA.

in reply to Afibagain

Afibagain

Will see what my cardiologist has to say, thank you for the insight into how you have been affected

Brianboru profile image
Brianboru

I was put on amiodarone immediately after insertion of my ICD. It may have been coincidence but my mental faculties nosedived. Memory was affected, easily confused and generally felt “old” although I am but never felt old being particularly fit. The doc insisted I stayed on this drug for another 3 months with a view to halving the dose. I put up with the poor quality of life and persuaded the doc to try something else. It turned out to be Ramipril and have been on this drug together with Nebivolol for about 2 years. Feel better but even they have debilitating side effects

cuore profile image
cuore

You say you have "numerous other illnesses" which may be a connection to your "advised to start on Amiodarone rather than go straight for an ablation." Nevertheless, you might want to read what Steve Ryan has documented on his atrial fibrillation site regarding having an ablation sooner rather than later:

a-fib.com/2-overview-of-atr...

With two ablations, I had been on Amiodarone for nine months. With increasing symptoms but not as advanced as yours, I asked my EP for another drug. I was then prescribed 200 mg Flecainaide which I immediately asked to be reduced to 100 mg in a dosage of 50 x 2 mg Flecainide. It has been keeping me more in sinus rhythm than Amiodarone. GP'd cannot prescribe anti arrhythmic drugs.

There have been two members who have posted that they had a very bad reaction to dofetilide (tikosyn ) plus Wikipedia says it is not available in Europe or Australia.

in reply to cuore

Thanks for the link to the site, very interesting.

The Amiodarone certainly keeps me out of AF so that is a +. I have to go to the GP first as the gate keeper to the Cardio team for a quicker appointment than I have. My annual check with them is already 4 months late and they tell me it will be at least another 2 months.

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