PERSONAL STORY NETWORK
A Physician's Perspective on the Side Effects of Lupus
I have the greatest passion for the topic of side effects because it occupies the greatest portion of my day and it is perhaps the most difficult topic to address. As a doctor, it is unfortunate that all I can do for my patients is to help them choose a reasonable treatment plan based on my clinical experience. I cannot predict exactly how this treatment plan will affect them, and sometimes medications have adverse effects. I have never prescribed a medication that I expected to cause a side effect, and I have never prescribed a medication that I expected not to work.
Side effects are things that can happen, not things that will happen; it is the difference between Possibility and Probability. It is possible that a patient will have a side effect; the chances, though, are very small – usually less than 5%. It is probable that the medication will help the patient – there's more than a 50% chance, since all medications have to prove a beneficial effect to be approved by the FDA.
While side effects are daunting, it can be gravely detrimental to the patient if he or she chooses not to undergo treatment because of what may possibly happen. I believe that anything strong enough to help you is strong enough to hurt you. But, I also believe that the definition of insanity is doing the same thing over again and expecting a different result. If you are not happy with your current state of health, then you should change something. This may mean that you must try a new medication, which comes with the risk of possible side effects. But the risk of a side effect is nowhere near the risk to your health if you choose not to take medical action.
The Fear of Side Effects
Why are we so afraid of side effects that we ignore necessary treatment? A major issue is that the information regarding side effects is unfiltered and overly broad. It is not for the benefit of the patient, but for full disclosure in a litigious society. The Federal Trade Commission (FTC) mandates that, in direct-to-consumer advertisements, pharmaceutical companies are required to spend equal time talking about side effects as they do beneficial effects. This "Fair Balance" act should encourage informed patients. Instead, side effects are described without any frame of reference.
In a study, there may be a minuscule difference between side effects felt by the placebo group and the medicated group, but even if that difference is statistically insignificant, it needs to be reported. For example, in a study testing an osteoporosis medication, 1,340 patients taking the placebo reported experiencing back pain, while 1,347 patients taking the medication also reported experiencing back pain. Because there were numerically more reports of back pain in the medicated group than in the placebo group, back pain had to be listed as a possible side effect. More women die from complications of osteoporosis than die from breast cancer, yet now women with osteoporosis may choose not to take a lifesaving medication in order to avoid possible back pain – back pain that is essentially as likely to occur when taking a placebo as it is when taking the prescription medication.
This full disclosure of side effects is a faith buster. It would be easy to say, "suit yourself, don't take the medicine," but I have seen tragedies where patients missed an opportunity to possibly save their own lives.
The Consequences of Not Treating the Disease
I once treated a young woman suffering from severe lupus with kidney involvement. Both her kidney doctor and I strongly suggested that she take chemotherapy to treat the extreme inflammation in her kidneys. She decided not to take the medication because she was concerned it would render her infertile. I explained to her that she had to be alive to have the chance to conceive a child and that her lupus was life-threatening. She would not change her mind and three months later she died from complications of her lupus.
There are consequences to not taking medications. Autoimmune diseases like lupus can have devastating effects on a patient's organs and ultimately may be life threatening. In this case, not taking the medication was more dangerous than the possible side effect that concerned her.
In order to be accurately informed about potential side effects of a medication, look to the medication package insert as well as your doctor for more information. The package insert will often have numbers and percentages based on clinical studies regarding side effects so you can understand the real risks and differentiate between effects related to the disease and effects related to the medication. Your doctor understands these risks, as well, but is less likely to emphasize negative effects and more likely to emphasize the positive effects as he or she tries to build faith. A doctor understands that it's probable that the medication will help with a slight chance of adverse reaction.
When we purchase a car, we don't depend on the salesman to warn us of all the dangers of driving. We're reminded that car accidents are common and may be fatal, but most of us tend to believe it won't happen to us. When taking medication, however, we have the opposite reaction: we tend to think that side effects will probably happen to us. It's a very negative mindset. I can't change how medications are viewed in our society, but when a patient asks, "The medication isn't going to hurt me, is it?" I always answer the same way: "I hope that you will get relief from your pain, but anything strong enough to help you is strong enough to hurt you, so if you get worse, stop the medication and seek medical attention."
Putting Things in Perspective:
Side effects are often provided out of context and in an attempt to avoid legal action in a worse-case scenario. It's important to be informed and ask questions when something doesn't sound right for your body. But the only thing that makes the practice of medicine work is faith: faith in your physician, faith in his or her treatment, and faith that you can and will get better. There is power in positive thinking if it leads to positive action.
Dr. W. Hayes Wilson is the Director of Rheumatology at Piedmont Hospital in Atlanta, Georgia. He is a HealthGrades Recognized doctor.