AMIODORONE SCARES ME

[KKI001]

Hi everyone I am very new to this forum.I have had AF for many years but was controlled by sotolol until last June. I was admitted to hospital after having a TIA, they put me on warfarin and amiodorone. I have now been given a date for my ablation end July at birmingham QE.What I would like to ask is how long can you be on amiodorone for and how often should you have the thyroid and liver tests My test late last year showed I now have an underactive thyroid for which I now take medication (the last time i had a blood test was in february I saw my doctor this morning and she said I don't need another one).And does anyone know how long after the ablation can I stop taking Amiodorone. sorry for all the questions and thank you for helping me realise i'm not alone.

[TheStand]

KKI001,

Welcome to the forum.

Some good questions. Most that I speak to, who are taking amiodarone have tests ran every 3 to 6 months. This is not a hard fast rule but most Drs want to get an early warning if anything starts to go wrong. Most of the problems that I have seen are normally in the liver and kidneys although there are many thyroid issues reported. I know some who take it for a few years and have had no problems and others saw indications of problems within 3 to 6 months. It is just very individual.

The standard procedure for an ablation is... You will be re-evaluated between 3 and 6 months after the procedure. If your attacks have stopped then the Dr will normally stop the med and monitor your progress to see if the AF returns. You could speak to your Dr and see if it is possible to change meds prior to the ablation. There are many other meds in the Rhythm control family that you could try. Many here take Flecainide. I took Propafenone for many years prior to my ablation with success..

Most *Informed* Drs will continue your anticoagulant for about a year after the ablation to ensure that you are not having attacks any longer.

I am sorry to hear of your TIA. Thankfully it wasn't a full blown stroke. If Drs would only realize the stroke danger in AF patients before it happens and do something about it. You should have been on the warfarin when you were diagnosed with AF. Many tell you to just take an aspirin. You might as well swallow a breath mint because at least that would help your breath. Aspirin does nothing for stroke risk in AF patients.

Again, Welcome to the forum and please ask any questions that you may have. Also keep us updated on how it is going.

Tim

[trouble in reply to TheStand]

Hi all,

I've been reading comments for some weeks now. I've learnt alot about AF and the drugs and procedures available deal with it.

KKI001 was the first to mention having had a mini stroke/TIA. At the age of 68 I had AF diagnosed but told by one Dr I didn't need to go on Warfarin as AF was not constant and I was on aspirin another Dr advised it was constant I should go on warfarin. At the same time the new anticoagulant drugs were about to be licensed for AF so I was looking into them.

2 weeks after the conflicting advice on taking warfarin - I had a big stroke. Fortunately I woke in the night, knew I was having a stroke & got to the hospital where they were able to thin my blood etc.

I was still left unable to walk or talk and still with constant AF. Nearly 2 years after alot of really hard work & effort, I'm able to walk and talk but it has left my memory shot to pieces, my right side weak and so many words simply lost to me. I've got all the usual symptoms of AF plus the post stroke symptoms. Fatigue and breathlessness are the worst. Illogical - but true - I'm too scared to go anywhere other than Dr, hospital or speech therapy in case I have another stroke. It's awful going to visit a daughter and having to leave after 10 minutes because I'm having a massive panic attack I cant control! I'm now going to work on this illogical fear having dealt with speech & mobility.

I know my GP and the cardiologists who I deal with know less than you guys!

Tim and the rest of you, please keep pushing the importance of warfarin for all AF sufferers both here on this website and to all who will listen!!

Thanks for being here to advise and support us all. It helps hugely just knowing others are scared and/or struggling too and you're not on your own.

[Hidden in reply to trouble]

Hi !

After reading your post I really do feel for you. I'm sure that for all of us a stroke is our biggest fear , which is one reason why i would never want to come off Warfarin EVER ! More of the medical profession should be made aware of the uselessness of Aspirin in treating AF sufferers.

I do hope you go on to get the help you need to cope with your anxiety & get your life back on track.

Best Wishes

Sandra.

[laserlight]

Hello!

I think this may be helpful to you. Do click on the link too; quite a lot of relevant info.

Good luck and all the best treatment to you,

Best, John

"Information specific to: Amiodarone 100mg tablets when used in Heart rhythm disorders.

   

Amiodarone (Am-mee-oh-da-rone hi-droh-clor-ride) is a medicine which is used in heart rhythm disorders.

The information in this Medicine Guide for Amiodarone varies according to the condition being treated and the particular preparation used.

Your medicine

Amiodarone hydrochloride is used to treat certain types of irregular heartbeats. Amiodarone hydrochloride, may cause sensitivity to sunlight or ultraviolet radiation. Some of these photosensitive effects may last for several months after you stop taking Amiodarone hydrochloride. If this could affect you, you should cover arms and legs, wear suitable hats and apply a total sun block to exposed areas of the skin. Amiodarone hydrochloride stays in the body for a number of weeks after you take your last dose.

Other information about Amiodarone hydrochloride:

when starting treatment with this form of this medicine it is normal to start with a high dose to get symptoms under control. Then the dose can be reduced to the minimum effective dose. For more information see packaginglabel or talk to your prescriber"

Source:

nhs.uk/medicine-guides/page...

[KKI001]

thank you for your help I feel a lot better now - KKI001 KAREN

[BStanding56]

Karen, I have been on Amiodoryn a number of times for 6 months periods, it is the one that brings me into sinus Rhythm, my consultant does not particularly want me to stay on it only a limited time, I normally have tests every 6 months

[Jason1971]

Hi I've been on Amiodarone for 7 months now and have had no problems. So far my tests have been fine and I go about every 4 months. It works well for me, but that's not to say it will for everybody. l'm aware of the side effects, but I guess there are possible side effects with anything. Until I have reason not to take it, I'm happy to do so. It works well for me.

Jason

[Hidden]

Hello Karen,

I have taken Amiodarone on two occasions -- the first about 18 years ago for 18 months & then more recently for 8 weeks prior to my 3rd ablation which was 6 weeks ago. When I was in the CCU the last time I was prescribed this drug, the pharmacist impressed on me the need to wear factor 50 sunblock & to obtain this on NHS as i should use this daily.She also said that I would be'closely monitored' whilst on Amiodarone.

I also have an underactive thyroid & my GP surgery made sure i had regular blood tests to keep a check on this.

Amiodarone, as you may well know, is an extremely effective , powerful drug & is not called Cardiac Domestos for nothing! At least you do not have to wait too long for your ablation.The decision to stop your drug rests with your EP -- they often seem to have different ideas. In my own case I stopped Amiodarone completely 7 days before my ablation & did not resume taking it afterwards. I am just on 1.25 mg Bisoprolol plus of course my Warfarin which, by the way I am more than happy to continue with indefinitely!

I am having my follow up with my EP in 2weeks time . I think in the UK the follow - up after an ablation is normally 2 months.

All the best for the end of July & then take it easy !

Sandra

[zohan]

amiodorone nearly killed me., sounds dramatic but true. this is more a reflection of the care i had and no one picking up on my deteriorating health, even though i was admitted to A&E several timess and onto cardiac and hdu. eventually it took the head of cardiology to read my file and take time to listen to me to diagnose amiodarone toxisity and my organs where shutting down and i was close to death.

My point and the moral of this tale of woe is be careful and question any changes in you health. Read up on side effects and be mindfull.

Also ask about Dromeodarone(sp?) as an alternative. i could tollerate this

[chrisharmer Volunteer]

Hi. I was on Amiodarone for just over 6 months, prior to a catheter procedure. Amiodarone is a seriously effective anti-arrhythmic, but it has some equally serious side effects - like all side effects, some people are more affected than others. It shouldn't be given unless all other drugs are ineffective, but sometimes it is prescribed as first choice because it is so effective. I had light sensitivity meaning lots of sun block, I had visual effects due to retinal deposits, and my fcial skin went a slate grey colour - all of these are reversible when taken off the drug. I was taken off it 3 months before my procedure as they wanted it out of my system for the tests, but also because it was poisoning my thyroid gland - my thyroid readings are still abnormal 10 years on so it probably did actual damage.

So - in summary - a very effective drug, but ideally only for 6 months at a time.

Best wishes, Chris H

[Offcut]

WELL!!! I have been on and off Amiodrone the whole time (21 years) I have had and been treated for AF. My last one was for 2 years and I have had one blood test in that time excluding my regular warfarin tests. I was told about high factor sunscreen and that was about it.

Phill

[zohan]

OP - best go into this with your eyes well and truly open! Amiodarone is harsh on the body/system and is one of the 'last resort' type drugs, it doesn't suit everyone so make sure you are well aware of side effects and if you have any speak up right away - as i said Dromeodarone(sp?) is a safe option but much more expensive to the NHS/NICE so will not usually be offered first.

link.springer.com/article/1...

drugs.com/sfx/amiodarone-si...

Please do your homework.

[excalibur]

Hi kk1001,

I was on amiodarone for about 6 years. It was very effective at keeping me in NSR. The most immediate side effect I had was increased sensitivity to sunlight, but suncream and a hat solved that. Eventually after 6 years I had to stop taking amiodarone as it caused deposits in my eye corneas - but this is reversible and they have disappeared a year after stopping. I tried switching to Dronedarone but this didn't work for me and I lapsed into permanent AF.

I don't think you should be worried about taking Amiodarone, as hopefully in your case once your ablation (s) have succeeded you won't need it any more.

Hope it works for you

Lance