life sucks

[PaulaEKing]

So, stopped amiodarone because it was killing me. Then, AFib comes back stunningly. So, back on amiodarone again. I figure I'm screwed either way, until I get an appointment for the ablation thing. what is one to do?

[jedimasterlincoln]

When you say it was killing you, how so? If it was keeping a lid on your AF temporarily it was probably worth the throw of the dice, but if you're that against it the AF is the latter of two evils! There are no right answers

[IanMK]

I’m on Amiodarone, but only a low dose and only for the short-term. No side-efects, thankfully, and it seems to keep me in NSR.

How far are you towards an ablation. Are you on a waiting list for one? Assuming that going Private is not an option, you could investigate alternative facilities within acceptable travelling distance and research their EPs and waiting times. If you are in England, you have a right to choose where you receive treatment - nhs.uk/common-health-questi...

[PaulaEKing]

Hi guys. After my thyroid stopped working, I asked to discontinue amiodarone. Dr. said sure. Of course, once it was out of my system it came back with a vengeance. So, I'm back on it, at 400 mg. The AF is more or less under control, although I still have bad days, especially when I'm stressed (a DUI will do that for you). I asked to wait with the ablation, as my job required me to be able to walk and function. I am in US with private insurance so waiting was my idea. Now I'm involved with therapy and possible prison time, so again the ablation will be put off. I am potentially going to cut down to 200 in a month or so, and the doc says the main worry is my lungs and liver (already taking a beating) so, yay. It (amiodarone) has always worked well for me, I just was worried about the side effects, which were brought to my attention by you all, as opposed to my cardiologist, who did not mention those. So, this is my story, and I thank everyone for your support. You are right, there are no right answers. Just, I guess, whatever will kill you first. The way I feel these days, I'm not sure I care.

[bennie06 in reply to PaulaEKing]

Check out my post on "amiodarone clinical trials". Good luck.

[PaulaEKing in reply to bennie06]

thank you.

[Rebma in reply to PaulaEKing]

Why prison time? That is stressful enough. What part of us are you from? Sounds like you need a second opinion and a good attorney. Your health comes first. I was on amo for at month 1200mg first week 800mg second week 400mg third week and 200mg and stopped. It almost did me in. Have deposits in my eyes now and see eye specialists. Have to have periodic blood tests. Bad drug. After my abliation they gave it to me. Good luck. Let me know what state you are in. Have names of good electro physicists for abliation

[bennie06]

Also on 200mg daily with no side effects.

A major trial over 11 years gave very strong evidence of significant reduction of side effects on low dose. Good luck.

[PaulaEKing in reply to bennie06]

Thank you! I'll need it.

[SRMGrandma Volunteer]

Have you tried Multaq, which is the same as amiodorone, but without the iodine, which is the culprit for the dangerous side effects? For some people that is the perfect compromise. Are you currently waiting for ablation? The sooner the ablation, the more likely it's success.

[jennydog]

I currently have a debilitating mobility problem. My left leg doesn't pick up and my left hand is disabled. I am on a 6 months waiting list to see a Neurologist ( blame Welsh NHS ). Anyhow I have no diagnosis but they have been twittering on about MS but that is very rare to be starting after the age of 50 and I am over 70.

A friend who is a therapist asked if peripheral neuropathy had been mentioned. No it hasn't. What did Google have to say? It says that causes could be shingles ( yes ) or Amiodarone ( yes ). I may get a diagnosis on Tuesday, we'll see what this Doctor has to say!

Did you know that Amiodarone is known as CARDIAC DOMESTOS

[bennie06 in reply to jennydog]

Amiodarone can, in a very small number of cases, cause peripheral neuropathy and Amio "users" should be aware of symptoms. High dose (400mg or 600mg daily) over a long period seems to be the cause. Hope that everything goes well on Tuesday and that a resolution can be achieved.

[jennydog in reply to bennie06]

Thank you so much. I don't think that I was on Amiodarone for long enough to cause too much trouble but I wanted to raise awareness. Its reputation has deteriorated markedly in recent years, probably deservedly so.

[PaulaEKing in reply to jennydog]

you are so right.

[etheral]

Tikosyn (dofetilide) works well for me. I was on amioderone and couldn't tolerate it. I have been in NSR for over a year now. You have to be be hospitalized for 3 days while you get the loading dose. It is available in the US but not the UK. Asf your doctor. You may need referred to an Electrophysiologist. I have had no side effects.

[hock217]

You planned right thing to do...ablation. Not unusual to try Rx first. Ablation and low dose Rx working for me. It took some time to work n I stopped n restarted. Finally, making plans with friends again. 18 months since ablation. Adjustment in everyway takes time. We're here to support your journey to a healthier life.

[Polski]

As indicated above, amiodorone is not the only option, and the other options have far less severe effects on the rest of the body, so insist on being able to try some alternatives while you wait for the ablation. It is your body, afterall. It is easy for the doctors to prescribe amiodarone. They don't have to live with the consequences!

[SophieBella]

I have not started that drug, but its been suggested along with a pacemaker as the next step. I said the side effects were too awful and they suggested Dronedarone as an alternative.

Im just mentioning in case this might be an option for you.

At the moment I am trying alternative things to avoid this route. Good luck.

[bennie06 in reply to SophieBella]

Deronadrone does seem a good option. It is very similar in composition to "Amio" but doesn't come with the "bad boy" iodine. Statistically it is not as effective as Amio, whose side effects are significantly reduced when on a small dosage. Good luck with which ever path you take.

[bisop]

So sorry Paula, I was on amiodarone before and it is the most horrible drug....couldn't tolerate it at all...not one bit. good luck with the troubles plaguing you in your life right now.

[Maagaa]

Hi Paula why haven’t you mentioned having a cardio conversion? My EP had me on 600 amiodarone 2x a day along with 800 magnesium then converted me and it worked it’s been 16 months in steady rhythm. Had the amiodarone lowered to 100 for months but had to come off hypothyroidism, calcium deposits in my eyes, balance issues and neuropathy got worse which I had previously from chemo. Sorry about your DUI but keep in mind to much alcohol can contribute to neuropathy. I wish you good luck hang in there

[PaulaEKing in reply to Maagaa]

Oh yes. Cardioversion works for maybe 48 hours. Cancelled the last one, as I was in NSR that day. They wont do it and I dont need to spend $4K on a worthless procedure. I will have an ablation I guess in a few months. In the meantime the 400 mg seems to be working but I know it's short term. We discussed the other med where you stay in the hospital for 3 nights but I think I'll do the ablation first. I guess.

[Maagaa]

So sorry you have out of pocket payments 4K is crazy for a 5 minute conversion hope the ablation comes soon for you and everything else falls into place. Prayers are with you. My Electrophysiologist offered me the med that you need to be hospitalized for but we decided that I would go with no help right now except the magnesium. Will never take amiodarone again what crap issues I have now

[PaulaEKing]

yep. Your thyroid pays the price. My cardiologist said the lungs are a big issue too - great, huh? You kind of need those to live...