Amiodarone

Was just prescribed amiodarone. Very worried about taking it.

[Mazza23]

Nearly killed me but we are all different

[Harfly]

Hi I was the same, very scared when prescribed it Dec 2016 and was on it for a year. The side effects that affected me the most was the night terrors, lack of taste and smell and it messed up my Thyroid levels. During the time I was on it I could not go out in the sun without at least factor 50 and I still burnt, cover up at all times. However it did what it was supposed too and kept me in NSR following ablation. I have now been off it for 2 months and my thyroid levels have settled, I can smell my beloved Chanel 5 again and taste is slowly returning. As for the disturbances of my sleep that continues but I am now on Bisopropol and that has the same effect on sleep. I am glad I am off it but for the sake of getting things back to normal rhythm I am glad I took it albeit short term.

[rosyG]

Harfly's post shows how difficult the balance is - are there any alternatives not tried yet?

[Dianemary]

I know how you feel, I have been taking it since the end of December and I'm waiting for a second ablation after going into atrial flutter with a rapid heart rate. The worst problem I've had so far is insomnia, I do have vivid dreams but thankfully not the nightmares I also suspect my hair is thinning! Like you I don't want to be on it but I've been told it's a short term measure, try not to worry too much, reading the patient information leaflet is terrifying but bear in mind they have to report everything on that. I hope it works for you and that you're soon able to stop taking it.

[cuore in reply to Dianemary]

Yes, my hair has thinned too, and have wondered if it is the Amiodarone that i have been on since July 2017, for over 7 months now.

[Dianemary in reply to cuore]

Do you know how long you're going to have to take it? I'm hoping to have a second ablation and be able to stop. I just hope my hair will return to normal. I had to stop taking lipitor for the same reason.

[Hidden in reply to Dianemary]

I’ have a checkup appointment tomorrow for my cardioversion last Friday. I’m going to get a different drug. I’m not going to take it anymore. I’m too afraid of the side effects. Yesterday I had to take an Uber to work because I was so nauseated and dizzy from it I was afraid to drive but I can’t risk losing my Job by taking so many days off

[Dianemary in reply to Hidden]

Good luck, I hope you find something else that suits you x

[cuore in reply to Dianemary]

My timeline to stop taking it completely is the end of March as I am being weaned off it. So, for February I do not have to take it weekends, and for March three weekdays -- Mon., Wed., and Fridays. Then I will be reviewed. If my arrhythmia continues, I suspect I may still have to be on it in some way, or given something else. I don't know. I have had a second ablation for perimitral atrial flutter on November 20, so I am almost at the end of my three month blanking period. I hope you have better success of staying in sinus after your second ablation.

[Dianemary in reply to cuore]

Thank you, hope all goes well for you and you can come off it completely. I find it so disappointing when things don't work out as we hope but we just have to keep on keeping on.

[seasider18]

It gave me a tremor and disturbed my equilibrium, unbalanced when making small turning movements. It also caused deposits to form on my eyes. Although I started it in June sun did not affect me and I just wore a hat as normal without any sun screen

[Hidden]

Never again

[Geza10]

Be careful felt so unwell when i was on it for maybe 4 weeks

[Roni7]

Hi, Ive been on it since December and was terrified on reading the side effects ! However, I now realise it totally saved my life as no other drug worked on lowering my heart rate. It does make me feel foggy brained and the thought of not being able to go out in sunshine is depressing. It also has made me slightly constipated which is a rare side effect. All in all I realised the importnce of being in touch with what my body was doing instead of relying on the possible side effects. I am seeing the consultant in March and will discuss the possibility of coming of it. Good luck !

[Hidden in reply to Roni7]

Thank you. You made me feel a little better about it.

[cuore in reply to Roni7]

I am on Amiodarone and take pysillium husk powder in my oatmeal in the morning. I am not constipated at all, but I also take magnesium citrate. both for constipation.

[Spoiler]

I took it for 1 month and was loaded with IV dose first, it caused terrible soreness in my jaw like I had the mumps, ringing in my ears, but the reason I was taken off was due to extreme shortness of breath which I did not have since I was in NSR. It was supposed to be a 3-4 month temporary drug prior and following ablation. Everybody is different, just not the drug for me.

[Thomas45]

It didn't agree with me, but we are all different. I was switched to Flecainide which gave no side effects but kept the AF episodes at bay, for about 12 years until my AF became persistent.

[Mike11]

I managed it for two nights post a heart bypass and had to stop. But by the sound of it you haven't actually tried it yet. Give it a go because it can be very effective BUT make sure you are constantly monitored with blood tests by your GP's nurse to ensure nothing is going astray.

[Mickey16]

Hi SadGirl2017 - my recommendation is read the leaflet very carefully, particularly about the contraindications before commencing. It did not stand out to me when I read it that someone who had a "history" of Bradycardia should not take Amiodarone and my prescribing team had obviously missed it too... consequently I became very ill quite quickly from taking Amiodarone, so my advice to anyone is read the leaflet carefully :))

[higgy52]

Told me to go on Amiodarone for a short time, now been on it for over 2 years E P wants me to stay on it, now got thyroid trouble

[1Jerbear in reply to higgy52]

Hi Higgy52 . This is just what I would do ,I'm not suggesting you to do it but I would tell my doctor I want an alternative drug because I will not take this drug anymore . They cant make us do anything ,period . My heart doctor told me once he wanted me to have a certain stress test . I said no, I will not do that .He asked why and I told him I had that type before and I will not do it again . He said well there is an alternative I can order .I said ok do it hahahahah . I was on Amioderone for about 6 months to try to fix A-Fib and he took me off because it wasn't working . I said GOOD that's a good thing . Good luck with it and tell'em what is on your mind.

[higgy52 in reply to 1Jerbear]

Hi jerbear,

Yes i would like to but i think the doctor has to ask the cardiolagist first and he will say no, and if i did come off it they might not do my next Ablation, thinking about what you say, thanks

[1Jerbear in reply to higgy52]

Higgy you have to do what you think is right . I understand your point . Also things are somewhat different than here on medical things . Two different countries . My prayer is that I hope you can get this worked out for the good of yourself . Hang in there .

[cuore in reply to higgy52]

Higgy52, you have posted several times that your EP wants you to stay on Amiodarone even though you have been on it for two years and your endocrinologist has said to come off it , and you have thyroid problems. You also say "the doctor" has to ask the cardiologist. If this "doctor" is an electrophysiologist, then you have the ranking order reversed for your condition.

You have also said in this post and previous ones that " they might not do my next Ablation." I submit that you are in a fear position which is unhealthy. Ask if Amiodarone is a definite prerequisite to ablation. Lots, including myself , were not on Amiodarone pre-ablation. Some EP's will say to come off the Amiodarone so that the rogue signals are more visible for the ablation if the Amiodarone is keeping the signals at bay.

I absolutely agree with 1Jerbear, tell'em what is on your mind. Look at it from another viewpoint: is the Amiodarone doing you more damage by staying on it than by coming off it? What guarantees is this EP giving you that after your having been on it for two years, with your thyroid destroyed, and other problems with it you have posted in the past, that this toxic drug is doing you more good? Get answers from your EP; you are entitled to them.

[offtherecord]

I had the amiodorone packet, prescribed by EP, but when I read the info I simply couldn't take it ,nor did I have the cardioversion the EP intended. That was 20 months ago, I have symptomless to me AF which has not measurably altered since then ..heart rate a regular irriegular 65. I take Rivaroxaban only and am in a 'valve clinic' now and will be monitored by echocardiogram etc annually, I can live with that. ...the amiodarone I wouldn't risk. Best wishes Sad girl 201, do what YOU can live with.

[Hidden in reply to offtherecord]

I cannot tell when I’m in afib. Since I have been on medications I feel great. I only know I’m in afib when I go for a checkup.

[Hellie54 in reply to Hidden]

I’m currentjy in nsr but had persistent afib until my ablation. I felt faint nauseous breathless was really scared etc etc and just couldn’t function. I’d tried other drugs with no effect so I willingly took the Amiodarone Which put me back in nsr after just a few days.

[higgy52 in reply to offtherecord]

hi cuore,

Very interesting what you say, will give it some thought,

thank you

[Hellie54]

Hi there, I took Amiodarone for four months until my ablation. Had about six months off it, than back on for three months. I felt absolutely fine and it kept me in nsr. I asked to come off it because of the reported long term effects and I’m now waiting to start taking dronedarone. A friend suffered from badly sun-burnt legs whilst taking it but My aunty has taken it every day for twelve years with no apparent side effects. It’s such a dilemma isn’t it

[Hidden in reply to Hellie54]

Wow. I seem to be the person that always had every side effect for any given thing. So I’m worried.