Which drug?

Some are worse than others. Amiodarone is one of the worst for side effects and toxicity.

Hubby is currently on Amiodarone and Metaprolol. I know the Amiodarone is HORRIBLE - have been afraid to read about the possible side effects until yesterday. Doc felt he HAD to be on it right now to keep the heart in rhythm. He's been on it since the first of the year (going on 4 months) and I'm scared to death that it's going to cause terrible side effects down the road. He already gets shooting pains behind his eyes - they come and go but it's still very scary. He told the doc about them and the doc didn't seem concerned. I read yesterday that it can cause blindness! I am now freaking out! Can he get off the Amiodarone safely?
When I asked our previous EP, I was told that Bruce would have to go into the hospital for 3 days to put him on a different anti-arythmic drug so that he could be monitored. In my mind, 3 days is a lot better than dealing with any of the HORRIFIC side effects from this drug!!
I know that usually, it's the long term use of drugs that brings on the side effects but what if it only takes a couple of months???? I'm so scared! Everyday seems like a new hurdle to get over.... when will it ever end? :(

Heather,
I have read on thest support group sites (well, here and Yahoo, they are the only 2 I belong to) that numerous people just refuse to take amodiarone cuz of the side effects. I know they gave it to me on my 2nd emergency room visit, and told me to see my cardioloigst as soon as possible...3 days into the amodiarone, in my cardiologist's office, he said "You can keep taking this, but some of your organs might shut down." If he said that just to scare me, it worked! That stuff was in the trash 5 seconds later. Of course, it is never a good idea to stop anything without proper medical advice, but I think your concern is more than valid.

Bill

I am glad you describe your EP as "previous." Any doc that uses such an irrelevant excuse as a hospital stay to dissuade your from switching to another anti- arrhythmatic is not very good. It would be a completely difference story if the EP said something like, " Amiodarone is the only one you should have because your husbands medical condition precludes all of the other antiarrythmatics. There are several other antiarrhythmatics out there. You might talk to your "new" EP about them. I wish you & your husband well.

"It seems that we are treating the symptoms and not the underlying deficiency... "

Everyone comes to that conclusion fairly early.

The most important things you can do are to anticoagulate and control heart rate. You HAVE to do both. If you are one of the lucky ones, rate control lessens or eliminates symptoms.

If rate control doesn't control symptoms, rhythm control usually does for the time you are in sinus rhythm.

Here is the problem... the rhythm control drugs that work best are also the ones with the worst side effects. If you are not in afib that much, the pill in the pocket (PIP) method is rather safe. If you have regular afib, you have to take the rhythm drugs (if you choose rhythm control over rate control)regularly. Besides not being that effective, there are two concerns... long term effects and the fact that the drugs effectiveness tend to wear off and you have to switch drugs. The thing that scared me off was the fact that rhythm drugs meant to regulate your atria, also can mess with your ventricles. Ventricular fibrillation is life threatening. The two drugs that everyone talks about having problems/side effects are amiodarone (for everyone) and Multaq (bad for people in persistent or permanent/chronic afib).

Your next choice is ablation. It is "minimally" invasive (involves catheters inside the heart) and not guaranteed to eliminate afib or last forever. But it is probably the best for symptom reduction or elimination. But you still might have to take rhythm drugs.

Lastly maze and its variants... more invasive... more effective.

The reason why I brought all this up is that everything in afib treatment has risks... even anticoagulants as you know.

Rate control is the most benign. But, on rate control, you could get dizzy and fall on your anticoagulated head.


You gotta take the risks associated with rate control (if you need it) and (appropriate CHADS) anticoagulation. Rhythm control is an option. Of course, afib is progressive and you might slow it down with rhythm control drugs... but with added risks. The hope of ablation and maze is that yiou have risk from the procedure, but not continued risk over your lifetime.

The asymptomatic (particularly persistent/chronic afibbers present a problem to the doctors because they can't say the procedure didn't work but at least you feel better, or with rhythm drugs, the risk is worth it because you feel so much better.

My 2 cents.

petey

After my ablation was started on Amiodarone but got the constant shakes, a strange light flashing episode, and couldn't sleep at all--- after just 2 doses! So my EP switched me to Multaq for the next 4 months.
I'm too afraid to ever take Amiodarone again.
D.

Isn't the real question - What are the short term effects of not taking these drugs? Think about it.

I know I probably wouldn't be here, or at least my quality of life would be greatly depleted if I were not on these medications. Okay, maybe 10 or 20 years down the road I'll experience severe side effects or the meds will become toxic to my body, but I have already outlived my expiration date.

I know several people who lived long lives on Amiodarone and other such drugs without any catastrophic effects. Personally, I have enjoyed every minute of my extended life once we found the right combination of medications for my needs. Am I concerned about long term effects they may have on me...NO WAY. NO REGRETS.

"Isn't the real question - What are the short term effects of not taking these drugs? Think about it."

It depends on what drugs you are talking about. I agree as far as anticoagulants and rate control drugs. The question is about the rhythm control drugs.

Amiodarone is for patients seeking symptom relief who are intolerant to other rhythm drugs. Amiodarone has rate control properties also, but there are other alternatives such as beta blockers. Some legitimate websites such as drugs.com say it should only be prescribed for life threatening arrythmias (like ventricular arrythmias) as it has serious side effects.

I will post the info separately.

There is no evidence amiodarone makes people with afib live longer (other than rate control properties that can be handled with other drugs... rate control drugs specifically.

I would try other things for symptom relief of afib before taking it.

My opinion.

petey

Amiodarone
Uniquely effective, but uniquely toxic
By Richard N. Fogoros, M.D., About.com Guide
Updated November 13, 2011
Amiodarone ( Cordarone, Pacerone) is the most effective, and certainly the strangest, antiarrhythmic drug ever developed. Anyone being treated with amiodarone should understand the idiosyncrasies - and the risks - associated with this highly effective drug.
Unusual features of amiodarone
Amiodarone has several characteristics that make it unique.
First, the drug takes weeks to achieve its maximum effectiveness. This is because amiodarone is stored in most of the tissues of the body, and to "load" the body with the drug, all the tissues need to be saturated. The typical "loading" regimen of amiodarone, therefore, is to use very large doses for a week or two, then taper the dosage over the next month or so. It is not unusual to give patients 1200 or 1600 mg per day at first, and then maintain them on as little as 100 or 200 mg per day chronically.
Second, amiodarone leaves the body very, very slowly. It is not excreted (like most drugs) by the liver or the kidneys. It is lost when amiodarone-containing human cells are lost - such as skin cells or cells from the GI tract, which are shed by the millions each day. Thus, if it is decided that one needs to stop amiodarone, the drug remains in the body in measurable quantities for months and months. The "half life" of the drug, in contrast to most other drugs, is measured in weeks instead of hours.
Third, because amiodarone is stored in many different kinds of tissues, it can produce side effects affecting many different organs. Some of these side effects take months or years to develop, so it is never true that one can stop being vigilant.
Fourth, amiodarone works through many different mechanisms, unlike most drugs. It fits into two separate categories of antiarrhythmic drugs (Class I and Class III, for what it's worth). It acts as a beta blocker and also as a calcium blocker. It dilates blood vessels, and and it often acts to "block" the effect of thyroid horomone.
The side effects of amiodarone
The side effects of amiodarone often take weeks or months to develop, so must be watched for as long as the drug is used.
Amiodarone commonly causes deposits to form on the cornea of the eyes - often leading to "halo-vision," where looking at bright lights at night is like looking at the moon on a foggy evening.
Amiodarone can cause a very disfiguring blue-grey discoloration of the skin, generally in areas of sun exposure.
Amiodarone often sensitizes the skin to sunlight, so that even trivial exposure can cause a fairly nasty sunburn.
Amiodarone can cause thyroid disorders, both hypothyroidism (low thyroid) and hyperthyroidism (high thyroid.) These thyroid problems are common with amiodarone, and can be unusually difficult to recognize and treat. For this reason, patients taking this drug should have their thyroid function routinely monitored.
Amiodarone can cause liver toxicity, so liver enzymes need to be monitored periodically. It can also cause rather severe gastric reflux.
The most serious side effect of amiodarone is pulmonary toxicity - lung disease. It can take several forms, from an acute lung syndrome that makes patients desperately ill, requires intensive care, and often results in death, to a more insidious, gradual, unnoticeable, "stiffening" of the lungs that both the doctor and patient can overlook until finally severe, probably irreversible lung damage is done. You can read more about amiodarone lung toxicity here.
When should amiodarone be used?
Amiodarone should be used for arrhythmias that are life-threatening or that are very disruptive to one's life, and for which there are no other reasonable therapies. Despite its drawbacks the drug has helped tens of thousands of patients, and has restored them to a nearly normal life. When used appropriately, amiodarone can be a major benefit to patients. But because of the potential toxicity its use should be limited. The doctor should, by prescribing the drug, be committing him/herself to becoming a long-term partner of the patient. He/she should carefully coach the patient on what problems to look for, and together they should be ever vigilant for the side effects of the drug.
Amiodarone's unique combination of "very effective" and "unique toxicity" makes the decision whether to take it a difficult one.
Drugs.com says:
Indications and Usage for Amiodarone
Because of its life-threatening side effects and the substantial management difficulties associated with its use, Amiodarone hydrochloride tablets are indicated only for the treatment of the following documented, life-threatening recurrent ventricular arrhythmias when these have not responded to documented adequate doses of other available antiarrhythmics or when alternative agents could not be tolerated.
1. Recurrent ventricular fibrillation. 2. Recurrent hemodynamically unstable ventricular tachycardia.
As is the case for other antiarrhythmic agents, there is no evidence from controlled trials that the use of Amiodarone hydrochloride tablets favorably affects survival.
Amiodarone hydrochloride tablets should be used only by physicians familiar with and with access to (directly or through referral) the use of all available modalities for treating recurrent life-threatening ventricular arrhythmias and who have access to appropriate monitoring facilities, including in-hospital and ambulatory continuous electrocardiographic monitoring and electrophysiologic techniques. Because of the life-threatening nature of the arrhythmias treated, potential interactions with prior therapy, and potential exacerbation of the arrhythmia, initiation of therapy with Amiodarone hydrochloride tablets should be carried out in the hospital.

... oh and afib, when appropriate treatment for stroke prevention and rate control is applied, is NOT life threatening.

So, with Amiodarone, you are using a serious drug, usually reserved for those with life threatening arrythmias, to reduce symptoms when all else failed.

This is not my opinion. It is all over the web.

There are 3 things that I respond to with concer:

1) When people aren't taking blood thinners and should.
2) When people think they have to have a procedure.
3) When people don't understand the benefits and risks of rhythm drugs.

I am not a doctor. Talk to your doctor. But insist on a straight answer. Make sure you are talking to an EP, not a primary care physician. Make your own informed decision.

petey

Thanks for the lecture pacyetep, now I remember why I no longer come here

Hi Petey,

In your first post you wrote that " Of course, afib is progressive and you might slow it down with rhythm control drugs".

My understanding from the 2013 AF symposium initial notes that people wrote is that more afib does not make more fibrosis and we need to rethink the "afib begets afib" concept.

Can you provide your insights and thoughts on afib progression. Thanks.

opsyn

As Petey said, hes not a doctor...but he makes a very good point. It comes down to risk vs benefit. That is a very individual decision. The cure shouldnt be worse than the disease.
I do take an antiarrythmic.....flecainide...and for me the benefit outweighs the risk.

Hi opsyn:

Yes, I got that same read from the stop-afib forum (reporting on the 2013 afib symposium). I think that website is excellent for information... the latest information. I was not saying "afib begets afib", which seems to be debunked (and a further reason why I and my EP chose rate control). What I do think is true is that people tend to have more episodes (not always) as they get older and the longer they have it. I don't think anyone was challenging that, only the idea that afib causes fibrosis, which perpetuates afib. I read somewhere that some number (like around 25-30%) never progress. Also, many people start out being persistent or chronic. I have seen so many posts where people say their episodes increased. So by progressive, I didn't mean fibrosis. Fibrosis is a concern for me, as I am on rate control. I did alot of research and asked alot of questions because I don't want to entertain ablation (rhythm control) until I see what is happening with FIRM ablation. petey