Amiodarone - Sources Of Help?

I am 69 yr. old male living in NY State. I was put on Amiodarone in Dec. 2021, 200mg/day. I summarily stopped the med. in Nov. 2022 when the morbid depression turned to distinctly suicidal thoughts. As always, when I experience new adverse effects I re-read, carefully, the side effects of the most recent med. added to my regimen. In this case it was Amiodarone and I immediately knew what was happening. In the final section generally labeled as, "call your doctor immediately if you experience any of the following side effects", I was experiencing several of the worst case scenario side effects. I told my cardiologist I had stopped the med. and he made NO auditory response, not a single word. I expected some direction, continue the drug, taper off, replace with..., you must continue, NOT ONE WORD! I have since not been able to get any of my doctors to enter into discussion about this med. The most commonly repeated response is, "many people take that" and/or (when I try too share what I've read) "I never heard that". They are clueless to, or heedless of, the Black Box warning and extensive follow-up testing that is directed in the med's. literature. I strongly believe that such follow-up monitoring would have revealed the fact that I fall into the one percentile of persons who cannot tolerate this drug and it would have been dis-continued, possibly even refused by me, if any such directives were followed. I have given up and am desperate. I cannot continue two be derided due to the fact that this med is killing me. Every day starts, and is interrupted by, crying many times throughout the day, I don't sleep well and am losing hope of finding help. Is anyone aware of medical professionals I may try to contact who are willing to discuss the potential downside of this med? I have suffered retinal detachment and undergone two laser surgeries while on this med. and I have found warnings that no such surgery is to be conducted on persons on this drug, the doctors I've approached, "never heard that". My vision is now so degraded that typing and reading monitors is nearly too daunting but I need to find a helpful contact, please help if you can? Just to have someone take me seriously about my suffering would be helpful. I've grown fearful of continuing to bother my doctors with it and groups are quite willing to decline "adversarial" patients, I have unfortunately learned.

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Hello Fred, how are you doing? Have there been any changes?

I'm very sorry to read about what you've been going through. Unfortunately, I've been there, I am very sensitive to many medications, and it took a long time, and moving to a different state, to find doctors that would listen to me, and help me. It is very frustrating.

Most doctors are actually not very familiar with the possible side effects, and dangers associated with many of the medications they prescribe, they don't spend a lot of time on it in medical school, since that concentration is focused more for pharmacists, thus they only know the basics, such as the most common side effects.

Have you tried actually printing out the information, and handing it to your doctor(s)?

Do you have any family, or friends who have witnessed your reactions to it, who can go to an appointment with you to make it clear to the doctors that you aren't just complaining, and have experienced actual issues related to taking this medication?

Have you tried seeing a different/new doctor to discuss this?

I'm not sure why they would consider you adversarial if you are just informing them of the problems you experienced while taking it.

What other medications are you currently taking? Some of your symptoms might be related to combining them.

Ref: Amiodarone Information

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