Saturday, November 14, 2009

The Lesser of Two Evils

This blog was written with the help and editing skills of my good friend, Vicki Bridges.

Life does not always give us perfect choices. If it did, decision making would be easy. All too often the decision to choose one thing means choosing to not have something else. And then, of course, there is the risk involved with any decision, even the ones that seem good for us.

For instance, have you ever watched and listened to a television commercial for a pharmaceutical drug? They are funny and scary at the same time. If you listen to the lightning speed disclaimer at the end, you have to ask yourself "Why would anybody want to take this?"

"May cause nausea, vomiting or dizziness."

"May cause liver or kidney failure."

"May cause stroke or heart attack."

"People who are pregnant, smoke, breathe, have a pulse or who want to live should not take this drug!"

The fact is that virtually every medicine we take to combat a disease or condition has a side effect. The question is, how do we decide? Some decisions are easier than others. Sometimes it comes down to choosing the lesser of two evils.

Recently I had to make one of these decisions. I have multiple sclerosis which is a currently incurable disease that effects the central nervous system, but some of the many symptoms can be managed or eliminated. One of my symptoms can best be described as electrical shock activity in the body, sometimes annoying and sometimes downright painful.

My doctor suggested I try Trileptal to reduce the neuropathic pain and it worked. The problem was it also gave me a side effect: fevers.

Fevers? That doesn't sound so bad. Take two aspirin and call me in the morning. But this is MS and it is not that easy.

Many of us with MS are sensitive to heat and this includes fevers. Though the pain went away, my energy was sapped away by the fevers and I could barely move, barely walk (with a walker) or even get out of bed. For me, that was an easy decision to make. I could readily live with the MS evil of recurring pains better than I could with the side effect of constant, extreme weakness. But not all decisions are so easy.

In the MS world, there is a newer disease-modifying "miracle drug" called Tysabri. It has improved function and quality of life for tens of thousands of people with MS. But it does have many side effects including: severe brain damage (PML), liver damage, and death. The side effect (called PML) has only affected about 23 people out of more than 40,000 who are currently using this treatment. Technically, I suppose that there is a very low risk of being "adversely affected," but I could be number 24. So for me, that side effect is too great a risk to take.

How do we make the difficult decisions about which drugs or treatments to take?

Below are my considerations when making these decisions. It is not an all inclusive list, but if it helps anyone, I am glad that I wrote it.

Have a doctor you trust.

Talk to your doctor and insist that he/she explains things so that you understand.

Are the side effects worse than the condition?

What is the benefit to be realized?

What is the risk and are you willing to accept that?

What is the risk of not taking the drug?

I would love to hear about your experiences and suggestions too. Perhaps together we can develop an all inclusive list.

Participate. Make a difference. Live a life that matters.

1 comment:

  1. Michael, this is a good place to start with any decision-making process regarding our health. The ads really tell us very little and the expertise of a physician is priceless.

    Re: Tysabri. There was a 24th patient with PML announced shortly after the 23rd. A 5th patient (with MS) died this past Monday from PML. Her organs have been donated for researchers to try to better understand what happens(happened) with PML. I haven't seen any official mention of this, just information passed on in the blogosphere from the patient's sister.

    I wrote a post at HealthCentral which I would love you input on. It is here - FDA, Social Media, and Pharmaceutical Advertising. Thanks.