Amiodarone

Posted by dajasorenson @dajasorenson, Jun 10, 2024

Has anyone been on Amiodarone for any length of time and had any side effects?

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Profile picture for jc76 @jc76

@debroo
The amiodarone is a very powerful drug to help tachycardia. It can become toxic to takers. I was told by my doctors it is the duration time the person is on it that is most important. I know many like me that only had minor side affects and others serious side affects.

Like all drugs we all respond as individuals. I was told (my Mayo doctors) that Amiodarone was 70% iodine and why it interact so much with the thyroid. I am having some side affects of amiodarone on my thyroid. My TSH rose drastically and they increased my Synthroid.

I am having another ablation in the future and hopefully can come off or at least reduce my Amiodarone dose (I am on 200 mg once a day).

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@jc76 I am experiencing Amiodarone side effects. I see rainbow halos around lights (mostly at night), increased liver enzymes and tremors. The plan is to switch to Sotalol. I am in the process of coming off of Amiodarone. This means I have to stop taking it for 6 weeks (scary). Sotalol appears may have its own issues, mainly some beta blocker side effects and I do not tolerate beta blockers so we will see.

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Profile picture for macmurf @macmurf

I am curious if anyone has suffered the horrid side effects from this med. I fall into the 1% that can't tolerate it, have become a completely different person and can't find a medical professional, except my pharmacist, who will even discuss it.

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@macmurf I was on this until 10 days ago and was taken off as it suppressed my natural HR of mid 40s down to below 30. I had been on 200mg daily for 2 months to that point. I’m awaiting an ablation for flutter on 9-8. I did experience constipation and no appetite while taking. Happy to be off due to iodine content. There are other drugs to replace this though I’m on nothing now and other than the occasional skipped beat I’m doing good. I believe many experience side effects.

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Profile picture for jc76 @jc76

@debroo
The amiodarone is a very powerful drug to help tachycardia. It can become toxic to takers. I was told by my doctors it is the duration time the person is on it that is most important. I know many like me that only had minor side affects and others serious side affects.

Like all drugs we all respond as individuals. I was told (my Mayo doctors) that Amiodarone was 70% iodine and why it interact so much with the thyroid. I am having some side affects of amiodarone on my thyroid. My TSH rose drastically and they increased my Synthroid.

I am having another ablation in the future and hopefully can come off or at least reduce my Amiodarone dose (I am on 200 mg once a day).

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@jc76 . Multaq, Amiodarone, carries a serious black box warning for an increased risk of death, stroke, and heart failure in specific patient groups. I didn't want to take that stuff. Scary.

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Profile picture for stan52 @stan52

@macmurf I was on this until 10 days ago and was taken off as it suppressed my natural HR of mid 40s down to below 30. I had been on 200mg daily for 2 months to that point. I’m awaiting an ablation for flutter on 9-8. I did experience constipation and no appetite while taking. Happy to be off due to iodine content. There are other drugs to replace this though I’m on nothing now and other than the occasional skipped beat I’m doing good. I believe many experience side effects.

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@stan52 - I've been on Amiodarone since the first week in July. My nurse practitioner check my thyroid today as my blood pressure has gotten elevated from what is normal for me. She said Amiodarone can sometimes affect the thyroid. I got a call this afternoon that the thyroid test is normal.

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Profile picture for fdixon63 @fdixon63

@stan52 - I've been on Amiodarone since the first week in July. My nurse practitioner check my thyroid today as my blood pressure has gotten elevated from what is normal for me. She said Amiodarone can sometimes affect the thyroid. I got a call this afternoon that the thyroid test is normal.

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@fdixon63
Per my medical doctors at Mayo Jacksonville. Yes most definitely Amiodarone has and is known to affect thyroid. In fact my doctors said Amiodarone is 70% iodine.

I post this because have been taking amiodarone for several months now. My first blood test show a sharp rise in TSH. So my Synthroid was raised. Then my second blood test show another sharp rise in TSH so was raised again. I want to post my direct experience with your post.

I am understanding from my doctors that amiodarone can also affect other organs, and other medications. I cannot comment on that as no personal experience with that other than I been having my eyes check and blood test done every time I see my PCP or other doctors looking for side affects of amiodarone.

Have your doctors do other testing to see if amiodarone is the cause and if now what is the cause. Many things can cause blood pressure to rise. I have been told a single rise in blood pressure only indicates to check it more often to see if stays elevated.

Do you have a home BP device you can take and record your BP. This can help your medical doctors is there is a concern with your BP readings.

REPLY
Profile picture for stan52 @stan52

@macmurf I was on this until 10 days ago and was taken off as it suppressed my natural HR of mid 40s down to below 30. I had been on 200mg daily for 2 months to that point. I’m awaiting an ablation for flutter on 9-8. I did experience constipation and no appetite while taking. Happy to be off due to iodine content. There are other drugs to replace this though I’m on nothing now and other than the occasional skipped beat I’m doing good. I believe many experience side effects.

Jump to this post

@stan52 I was on daily dose daily from December 2021 through November 2022 when my thoughts became distinctly suicidal. I immediately stopped the med. and made appointment with my PCP as instructed in med. data sheet. When I broached the subject with him he angrily responded, "I never want to hear that word again, you are only interested in litigation", he then stormed out of the exam room and did not return. If the potential side effects were described, as directed by the FDA, it is unlikely I would have agreed to take the med. After prescribing no additional monitoring was established, again per FDA directive. I told my cardiologist immediately after stopping med. abruptly and got no response, he just kept typing without acknowledging my comment. Since that time I have become a different person, very much for the worse. Depression is constant as is overwhelming anxiety/nervousness, extreme irritability, incessant sneezing fits (12 - 15 times in rapid succession), dramatic hair thinning. bone rattling branchial cough, suffered detached retina and underwent two laser surgeries without stopping the med as directed. I am left with double vision, a spatial disorientation and generally a loss of interest in life/hobbies/socialization in general. My career required ability in "fast math". I once beat a calculator in dividing, three ways, a small lunch check to three places to the right of the decimal point leaving one penny extra for one of us to pay before a colleague could calculate using calculator. I now have trouble calculating the tip on a restaurant check. Many of the effects have receded greatly while some have stopped completely and others persist. I have tried to find medical professional to help but the most common response I receive is, "I've never heard that" or "many people take that med.", none of which helps me. I have no more strength to keep trying to discuss only to be discounted out of hand or reprimanded as described. I don't expect a great deal of actual help at this point, the damage is done but just being able to briefly cover what I've been through in hopes of helping others and continuing any further improvement is better than avoiding mentioning for fear of irrational reactions as described above. It's hard enough to find doctors who are taking new patients these days I can'r risk losing those I have good rapport with. It truly can be a life altering experience and prescribing and follow-up monitoring directives should be absolutely enforced. I think I may be more trouble than I'm worth, not because of the effects but because I survived them, many don't. There's a reason why it's dispensed as a compassionate drug of last resort to be used after all other options have been exhausted. It was added to my long established regimen by a doctor who I had never seen before almost serendipitously.

REPLY
Profile picture for jc76 @jc76

@fdixon63
Per my medical doctors at Mayo Jacksonville. Yes most definitely Amiodarone has and is known to affect thyroid. In fact my doctors said Amiodarone is 70% iodine.

I post this because have been taking amiodarone for several months now. My first blood test show a sharp rise in TSH. So my Synthroid was raised. Then my second blood test show another sharp rise in TSH so was raised again. I want to post my direct experience with your post.

I am understanding from my doctors that amiodarone can also affect other organs, and other medications. I cannot comment on that as no personal experience with that other than I been having my eyes check and blood test done every time I see my PCP or other doctors looking for side affects of amiodarone.

Have your doctors do other testing to see if amiodarone is the cause and if now what is the cause. Many things can cause blood pressure to rise. I have been told a single rise in blood pressure only indicates to check it more often to see if stays elevated.

Do you have a home BP device you can take and record your BP. This can help your medical doctors is there is a concern with your BP readings.

Jump to this post

@jc76 - Yes I have a blood pressure machine--the cuff kind and check it daily. I'll continue to monitor it and if I see an increase in my BP I'll let my cardiologist know. Thanks for sharing your experience.

REPLY
Profile picture for macmurf @macmurf

@stan52 I was on daily dose daily from December 2021 through November 2022 when my thoughts became distinctly suicidal. I immediately stopped the med. and made appointment with my PCP as instructed in med. data sheet. When I broached the subject with him he angrily responded, "I never want to hear that word again, you are only interested in litigation", he then stormed out of the exam room and did not return. If the potential side effects were described, as directed by the FDA, it is unlikely I would have agreed to take the med. After prescribing no additional monitoring was established, again per FDA directive. I told my cardiologist immediately after stopping med. abruptly and got no response, he just kept typing without acknowledging my comment. Since that time I have become a different person, very much for the worse. Depression is constant as is overwhelming anxiety/nervousness, extreme irritability, incessant sneezing fits (12 - 15 times in rapid succession), dramatic hair thinning. bone rattling branchial cough, suffered detached retina and underwent two laser surgeries without stopping the med as directed. I am left with double vision, a spatial disorientation and generally a loss of interest in life/hobbies/socialization in general. My career required ability in "fast math". I once beat a calculator in dividing, three ways, a small lunch check to three places to the right of the decimal point leaving one penny extra for one of us to pay before a colleague could calculate using calculator. I now have trouble calculating the tip on a restaurant check. Many of the effects have receded greatly while some have stopped completely and others persist. I have tried to find medical professional to help but the most common response I receive is, "I've never heard that" or "many people take that med.", none of which helps me. I have no more strength to keep trying to discuss only to be discounted out of hand or reprimanded as described. I don't expect a great deal of actual help at this point, the damage is done but just being able to briefly cover what I've been through in hopes of helping others and continuing any further improvement is better than avoiding mentioning for fear of irrational reactions as described above. It's hard enough to find doctors who are taking new patients these days I can'r risk losing those I have good rapport with. It truly can be a life altering experience and prescribing and follow-up monitoring directives should be absolutely enforced. I think I may be more trouble than I'm worth, not because of the effects but because I survived them, many don't. There's a reason why it's dispensed as a compassionate drug of last resort to be used after all other options have been exhausted. It was added to my long established regimen by a doctor who I had never seen before almost serendipitously.

Jump to this post

@macmurf - What a horrible experience. We suffer and go to our doctors for help not to be demeaned or criticized. Two years ago I was taking Levofloxacin antibiotic and had a night terror episode. I stopped taking it immediately. I can't recall exactly if I reported it to the doctor. A lot of times we do hear them say, "I've never heard of that, just keep taking it." So frustrating.

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What I can't understand is why prescribers don't simply follow FDA prescribing directives. Explain, get patient's signature either agreeing to take med. or not. If they refuse med. there is no legal threat. If they agree to take it, simply establish follow-up monitoring, again as directed and alter treatment as warranted. From a legal standpoint it seems you would be bullet-proof vis a vis prosecution with either decision. My experience has caused me to give up life-long interests such as painting, drawing, woodworking which provided escape, therapy as a calming influence as well as a way to augment monthly income. My life has changed for the worse and it doesn't appear it will recover further. The depression was so great that I have been working with psychiatrist in hopes of finding some relief from daily sadness and overwhelming anxiety and unpredictable irritability with those who don't expect nor deserve it. I don't expect magic answers but I desperately needed to find some one, or group whom I could speak to without being obnoxiously reprimanded or worse.

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