mom just started amiodarone

[katie1234]

Hi there,

My mom, who had her mitral and aortic valves replaced on July 30th, was just put on amiodarone last night after an emergency visit to the cardio (BP was 180/60 again and her HR was going nuts). Having read on this site about what a serious drug this is, I am very concerned.

I called her cardio today (on the sly) and told her about my concerns (1- the drug in general and all of its potential side effects and the fact that it is the first antiarrhythmic she will be using while it seems like this should be a drug you use as a last resort; 2- the potential for lung complications coupled with the fact that my mom's lungs are already somewhat sub-par; 3) the effect on her coumadin levels; 4) the fact that she has no thyroid and takes synthroid; 5) can we try something else first please????

The cardio told me that she has gone over and over this case with many EP specialists, pulmonogists, and my mom's surgeon, and after many hours of discussion, they all agreed that she should be on this drug. She told me that the rhythm problems my mom is having are dangerous ones, and that getting her into sinus rhythm consistently is a top priority.

I definitely trust these docs, and I do feel they are really putting all of their expertise into my mom's case...I'm just still nervous. And I don't want my mom to know...

I don't know what else I can do.

,
Katie

 

[bvdr]

Katie, I've been on amiodarone now for a few months but will hopefully be off it in a couple of months. It is a drug I never thought I would would be using for all the reasons you mentioned. I have read that although it is known for doing lung damage it is not known to make preexisting pulmonary problems worse. I have lung issues myself so I was very interested in that. As far as effect on coumadin levels....I am taking approximately 1/2 the coumadin dose that I was on before amiodarone. As far as thyroid function, I know it can depress thyroid production and I'm thinking that your mom being already on thyroid supplementation may be a good thing. Some of the other drugs used to treat rhythm disturbances are contraindicated when there is structural damage to the heart. It seems like all of them have significant side effects. There is no easy answer to the dilemma but maybe this helps ease your mind a little.

 

[PJmomrunner]

Katie:

I certainly understand your concern. Amiodarone is a serious drug with some bad side effects. My mom was on it for years and has suffered eye and thyroid problems as a result. I don't think short term use is problematic and it is very effective.

My mom is now on a new class III antiarrythmic called Tikosyn (of dofetilide). It is also a powerful drug and can cause kidney problems or other heart arrythmias--when she was put on it she was monitored in the hospital for three days to watch for those problems. I'm not sure if she'll have to be monitored periodically or if the absence of problems in those three days indicates a general tolerance. It may be worth asking about anyway.

When my mom was put on this new drug it was post-surgery. She had a cardiac ablation (a very extensive, 5-hour one) and was put on the Tikosyn to keep her in sinus rhythm while her heart heals from the surgery and she was told it would take 3 to 6 months. I would imagine something similar would apply post-surgery for your mom if her conduction system was messed with and that caused the arrythmia she is experiencing, so maybe she'll be on the Amiodarone short-term?

Good luck to your mom. Sounds like she has a great advocate in you.

 

[ALCapshaw2]

I understand your concern Katie.

I'm glad to hear that this was not a 'spur of the moment' decision by a single Doctor who just wanted to stop the arrhythmias and move on. In the sense that several Doctors were consulted and alternatives were discussed, it was a 'last resort' decision given the circumstances.

At this point, I would say that it would be best to simply accept the decision and hope / watch to see that it does get her heart under control. THEN start asking the Doc's about dosage and duration of treatment. The problems are usually seen with Long Term use or High Dose use or both.

In the mean time, I hope your mother responds properly to the treatment. Once she is stable, then you and the Doc's can start thinking about what to do next. Hopefully Vigilent Monitoring will prevent adverse effects.

'AL Capshaw'

 

[hensylee]

Ask her doctor about the length of time she will be on it - then ask again - and again........just so she knows you know about amiodarone. My bro was on it for 16 months and that was a big no-no for him and was because they 'forgot' about it. It's wonderful of you to question the doctor about your concerns. If you continue to discuss it then maybe they will take her off it as soon as possible. I wish you and your mother well and thank you for being her advocate. Blessins......

 

[Karlynn]

We get upset here when we see doctors put patients on amiodarone for "simple" rhythm problems without trying anything else. It sounds like your Mom's doctor has looked into this and did not take the decision lightly. I'm sure you'll call if any concerns arise. I wish your Mom the best. She has not had an easy time of it.

 

[Ross]

You've done your homework and know the drug can be dangerous, just don't let them forget that they put her on it. Sounds like they did consider other things, but why they didn't try something else first, is what I question. At any rate, just shoot for the shortest time possible on it.

 

[katie1234]

Thanks so much for all of the support, everyone.

Mom was supposed to start the toporol and the amiodarone on the same day, but she has convinced the cardio to let her start the toporol this week and see how it goes without the amiodarone. She is going to go to her long island cardiologist for a second opinion before starting the amiodarone, which her new york city cardiologist said was a good idea.

The other thing I have a question about is the fluid issues my mom is dealing with. Since getting out of the hospital 5 and a half weeks ago, she is in this pattern where her weight will go up 4-5 lbs, she'll feel terribly nauseous and her BP will go up, and then the cardio will put her on lasix for a day or two, her weight will go back down and the nausea will get a little better, and then in a couple of days, the weight creeps back up, the lasix is re-started, etc. It seems obvious that she is not able to regulate her fluid on her own since it goes back up every couple of days, so we've asked the cardio for some sort of maintainence dose of lasix so that she won't have to go up and down like this. The cardio said it is too early to set up a regular maintainence dose, and she just wants my mom to report her weight in to her everyday. Any thoughts on that? It seems kinda weird to me.

Thanks,
Katie

 

[John & Joann]

You may want to ask about Beta Pace (Sotolol) This medication does require a pacemaker if it is used in higher quantity. This has worked well for Joann. We are not MD's. but this medication was used as an alternative.

 

[ALCapshaw2]

Katie,

Did the Doctors ever identify the type of "rhythm problems" your mother is having by the proper medical name?

Did they ever say WHY the did not want to try any of the other alternatives?

'AL Capshaw'

 

[Kathleen]

Hi Katie
My suggestion would be to find one cardiologist that you and your mom can trust. Going back and forth gives back and forth advice. I feel you know the answers to the amnio issue and the lasix question. There is no doubt in my mind she needs daily Lasix. I have never heard of a time line for starting it daily. There are lots of excellent cardioligists that you may have to drive to see but it is worth it to get sound medical care. My first surgery was 28 years ago and I used to drive 80 miles each way to see my dr since that was the closest heart care. He is still my cardiologist and has made the best decisions, with me, for my care. The last 4 years I have lived within 20 minutes of his office.
Kathleen