Amiodarone

[Rebma]

Anyone in US,UK, Australia or anywhere on amiodarone past or present? If yes what are your side effects? If off it did your side effects go away completely? Thank you

[Maagaa]

Hi Rebma was on amiodarone for over a year helped my heart tremendously after cardioversion.Dr Rad put me on that med but had to come off 2 months ago I got calcium deposits in my eyes hypothyroidism and balance issues. Been off and in steady sinus rhythm but pray everyday not to flip back to AFIB. If I flip he said we will try another option. Hope you are well

[Rebma in reply to Maagaa]

Hi hi. Yes I am off now only a month on very high does and tapered off After abliation Got deposits in eyes also. My last Dose was end of April. Go to eye dr every 3 months. Bad medicine but help control our afib. How r u? Got appt with cardiologist (New) in September. Just got a two week heart monitor taken off. Waiting for results. Still have Dr Rad in my notes. Have you figured out a way to communicate or meet? How are you feeling? Did you have your follow up appointment with oncologist?

[Danny44 in reply to Rebma]

Hi,

Be careful as you can I’m still on but did stop earlier this year and had huge AF attack to the point I thought that’s it.Im back on now it’s quite toxic to your organs and eyes but it does keep you out of massive AF.I want to stop but no options.In shocked with all of us suffering and how far medicine has come on and tech.They still can’t find a cure for AF.

[Rebma in reply to Danny44]

I agree. My neighbor got a pacemaker. Her afib was low heart rate and crazy rythum. She still takes meds but said she feels alive again. Mybrate is high with crazy rythum. Wish they could find a cure or a safe pill to take.

[soberhoumom in reply to Danny44]

I'm so sorry this has been a struggle for you. Take gentle care!

[Alfieros in reply to Danny44]

I know this is an old post but I’m just wondering how long were you off the Amiodarone before you had your a fib attack?

[Rebma in reply to Maagaa]

Hi Maagaa. How are you doing? How is the afib? When is your next appointment with Dr Rad?

[Maagaa in reply to Rebma]

Hi Reb still in sinus rhythm echo on Thurs. no Dr Rad for another month just to ck pacemaker. Everyday afraid to flip back with no amiodarone but still on 800 magnesium. Back to bladder have cystitis a lot of pain so surgery on 28th. Cataracts getting done in Sept . Hopefully then be in the pink. Are you still uncomfortable with your AFIB?

[Rebma in reply to Maagaa]

Maagaa. You are a trooper. So much. So far I am doing pretty good. Waiting to hear results from having heart monitor on. My Bp varies as does heart rate from 50’s to 80’s no reason. Other pesty issues. I guess I will be on blood thinners for life. What will they do for your bladder? That sounds serious. I have the start of a cateract in my right eye. Getting old is not for the faint of heart. How is your summer going? Do you have grandchildren? I think I will probably not be a grandparent. Oh well.

[Maagaa in reply to Rebma]

My heart rate was 40 so with pacemaker at a steady 65. If more bladder tumors they will be removed my urethra damaged from many cysto and Catheters. Got to be careful with only 1 kidney. 8 grands ages 21 down to 12. Joys of my life. Will try to meet with you before Sept. feel good. Getting those red messages from website wish I could pass on my phone # but to risky

[Rebma in reply to Maagaa]

That would be great. Stay well and let’s try to meet. Enjoy your grandchildren.

[Gaygay45]

I am probably just extremely lucky but I have been on Amiodarone for 10 years and have had no side- effects.

It has controlled my PAF very well

Thyroid and other blood tests every six months and no abnormality ever found

I have the deposits in my corneas but both my optician and eye specialist have reassured me it will never affest my vision and people looking at me cannot see them.

I am very careful with my skin using Factor 30 on all exposed skin and Factor 50 on my face and neck.

Recent Pulmonary Function Tests showed I have very healthy lungs with above average lung capacity.

I am lucky I know but I think the scares about Amiodarone are a bit overdone and yes I have checked the literature.

Just because a drug has side- effects, it doesn’t mean everyone taking that drug will have them

[Rebma in reply to Gaygay45]

You are very lucky and fortunate. You must come from great genes. So happy for you. Stay well and keep us posted.

[Gaygay45 in reply to Rebma]

My genes are not that great. I have a strong family history of early MI deaths and also thrombotic strokes. I suspect some of the strokes were in people with undiagnosed AF.

I am a keen advocate of anticoagulants. So glad the new ones have come along and I could stop taking Warfarin.

[Rebma in reply to Gaygay45]

Me too!

[soberhoumom in reply to Gaygay45]

You are very fortunate. After coming off Amiodarone, I was coughing up so much mucus (this would explain why I couldn't make it up the stairs). Even with sunscreen I still could not be in the sun.

[Gaygay45 in reply to soberhoumom]

I am sorry to hear that soberhoumum. I have read up on Amiodarone and when it causes Interstitial lung disease, it causes a dry cough not a productive one with phlegm like yours. There must have been some other cause like a chest infection.

I know how it is. If you take medicine that is known to have lots of side-effects, there is a natural tendency to blame it for every symptom you get.

I have done it myself,

You were unlucky to have such severe sun sensitivity which was almost certainly due to Amiodarone.

I could not stay out of the sun as I love tennis, walking and cycling. It would make me miserable

[Norm]

Hi,

I was on a tapering does of amiodarone from Jan 2016 to May 2016.

Doc took me off but I had already read the leaflet with the tablets, as we all should.

Now have tablet for rest of my life for hypothyroidism. This is real nasty drug and should only be used as a last resort, not a first try. It is full of iodine.

It did not work for me and rest as they say is history.

You can search amiodarone in AF Association above and it will give you lots of information

Hope this helps

Norm

[Leeson]

Took Ameoderone 200 mg for twelve years, stuffed my thyroid up completely, now have to take thyroxine to replace not having a thyroid, , but in fairness was out of af for twelve years, just a few bumps, just had ablation, 9 weeks ago, now having bumps and jumps that definately didn't get as bad when on Ameoderone.

[soberhoumom in reply to Leeson]

My friend's mom had an ablation and the doctor said she would continue to have the flopping in her chest until the scar tissue healed the burned valves.

[Becksagogo]

I'm afraid I had a bad reaction to Amiodarone even though I was only on it for a short time. Unfortunately it seems to be the drug of choice as it does what it says on the tin. Some people seem to thrive on it. It appears that we have to jiggle our medication around until we find what suits us. Hope you manage to find something that suits you better

[bushy2016]

induced optic neuropathy...I was on the max dose for around 3 months...and went to the opticians...who sent me to a specialist, as my eye sight had calcium build up due to the amiodarone, I was told it would get better...18 months later...eye sight is worse...great drug.but has some bad side effects on some people

[grandmadogs]

I was put on amiodarone after a failed cardioversion two months ago to get me ready for a second attempt which I had just over a week ago. I started with 200mg twice and day for 2 weeks which was then lowered to once a day. I felt quite poorly for the first 2 weeks but then it seemed to settle down. The second cardioversion was successful for only a few hours and I am now due to have an ablation within the next month. My cardiologist/EP says that I should only stay on it for a maximum of six months due to the side effects. I have persistent AF and sometimes find it difficult to work out what is caused by the AF and what is caused by the medication. Does anyone feel the same?

[etheral]

Amioderone has many well documented and serious effects. If you are in the U.S. or have availability, Tikosyn is a much safer alternative. Ask your doctor...hopefully an Electrophysiologist.

[Cutlass in reply to etheral]

I was put on tykosyn after amoderone which did havoc with my thyroid. Are u on tykosyn. I have occasional afib episodes with tykosyn but glad to be odd amoderone

[etheral in reply to Cutlass]

I've been taking Tikosyn for 1 year and have had no dicernable side effects or relapses into AFib. What if any interventions were made if any were made when this happened?

[Drummerswidow]

My Mother was on Amiodarone for years. She now has a form of interstitial lung disease and is under the care of the Chest Physicians. This leaves her breathless and she can’t walk very far. She did have deposits in her eyes but her sight is very poor anyway due to macular degeneration. She is 87 years old. Though it is a very good drug I personally would not want to take it. It can also affect your thyroid.

[Rebma in reply to Drummerswidow]

Your poor mother. What is she on now? Did her cardiologist discover her lung condition? Sometimes I feel our doctors are so specialized that they don’t look at the whole person. In the USA it has become a huge business. Go to primary and they send you all around to specialists in their group. No more independent doctors they are all in groups and they don’t share information. Very stressful for patient. We are paying for this. Just ridiculous. Hope your mom feels better.

[Drummerswidow in reply to Rebma]

I can’t remember what they put her on. It was found incidentally when she was in with ? Pneumonia. The cardiologist never mentioned any problems. She had now moved to a different area now thank goodness.

[Von19]

I was on Amiodarone for a short period and during that time developed calcium deposits in my eye, hypothyroidism and hypertension

[Rebma in reply to Von19]

How long and what dose were you on? I have the deposits and been to neuro optjmologist and retina specialist and my regular eye dr. Thank you

[Amcech]

I was on amiodarone for 7 months. Developed high bp and elevated cholesterol levels. 3 1/2 months after stopping amio, bp has returned to normal and cholesterol levels are back to normal too. When on amio doctor increased my bp med and it did not lower my bp much. So I know that the amio was the cause. Also, the amio did not stop my afib completely. I started flecanaide when the amio was stopped and have been afib free since early April.

[soberhoumom]

Hi! This will be long but I feel I must mention all that's come with & without Amiodarone.

I had cardioversion exactly three years ago after an Amiodarone drip failed. I took 200mg twice a day in tablet form for five months and then halved my dose for 2½ years. The very medicine that saved my life drained me of energy;caused weight gain(hypothyroidism), rosacia, photo-sensitivity, muscle & leg weakness (I couldn't make it up a flight of stairs). Traveling was a nightmare. Deciding to not go to Costa Rica was the deciding factor in me coming off of Amiodarone.

In April I told my cardiologist I was done with Amiodarone. He was reluctant but gave me a heart monitor with the agreement I go back on it if I have regular A-Fib attacks. I did have occasional A-Fib so he put me back on Eliquis (5mg twice daily). Within a month I started losing weight and my rosacia started clearing up. It took about three months before I could make it up stairs (getting stronger daily). In general I feel so much joy to feel better. I am happy I can be in the sun again. I do take magnesium taurate every day. The only issue I'm having is my thyroid levels are high(I've been off Synthroid for two months) and I'm dealing with sleepless nights.

I haven't gone into A-Fib in over one month!

I wish you love & luck with your journey!

[mishugenah]

I understand it takes several months for the Amiodarone to leave your system. I've been on it for 8 years, in varying doses depending on the status of my afib. Now, post ablation and two cardioversions *post ablation (4 total), I'm being weaned off of it, and have hopes of getting off totally, if all else is good, in November. In the past 8 years, I've had hyperthyroidism, now its hypothyroidism, eye problems, and others related to this med. This Wednesday I get a chest x-ray, also to see if there's any effect from the amiodarone. Can't wait to be off this drug, and its one major reason I went for the ablation without kicking and screaming.

As for the ablation, post cardioversions, only one "blanking" afib attack in May, and nothing since then, despite being a passenger in a car accident last week. Depending on the status of your Afib, consider going that route earlier than I did! Good luck!

[Roseyuk]

Yes was on Amioderone for quite a few years, for my AF, which kept my attacks right away..

But it’s not meant to be a long term drug, as I found out..

To my horror, it wrecked my thyroid, and affected my eyes, long term

I have light sensitivity...cannot go anywhere without sunglasses..

I was living in USA when I was put on it. Probably about 15 yrs ago, and they diagnosed thyroid not working, and still let me take it..

It’s wasnt until I returned to UK, that my GP

Finally told me how toxic it is..

[Kathleen1070]

Hi Rebma.I was on amiodaron for 5 months with very bad side effects.My liver numbers and thyroid numbers went off.I had shortness of breath,anxiety,insomnia to name a few.Overall sick feeling.I have been off for 5 weeks and feeling so much better.Side effects are slowly leaving my system.I have been fine for 6 mo.and hopefully will stay this way.Good luck to you.