Starting a new lupus drug: How to decide

Here's a question I often hear from lupus patients. In fact, it's a question I had to ask myself many years ago when my doctor suggested I start Cellcept for the first time:

"My doctor wants me to start a new medication,  but I'm nervous about the side effects, and worry that it won't work. How do I decide what to do?"

Good question! Starting a new medication can be tricky. You read the pamphlets, and do research online, but ultimately you must make the decision that's right for you. Even my doctor says, "The patient must decide." So here are some guidelines to help you through the decision making process, three strategies that I have used multiple times when faced with a tough decision to start a new medication: 

1) Discuss your concerns openly with your doctor.

He or she may be able to clarify the literature, dispel some misunderstandings, or explain what ".01% chance" REALLY means. I remember reading the long list of side effects for CellCept years ago, and being completely overwhelmed, particularly at the mention of "an increased risk of developing lymphoma". So I brought it up to my doctor, explaining that it was a real sticking point in making my decision. We thoroughly discussed the subject, and I was able to make a much more informed decision, based on the additional components he provided. That's the goal - you need to have the right information to make the right decision for you, and your doctor is often the person to provide it.  

2)   Consider the benefits, and weigh them against the risks.

If the doctor is recommending a change to your medication regimen, it's probably because your current cocktail of drugs isn't working. The goal for any lupus patient is to keep one's disease activity managed and under control. Thus, you have to weigh the benefit of controlling a flare with the new drug against the unfavorable side effects of that new drug. You might find more damage is actually being done by not starting the med, and letting your disease run amuck. 

3) Determine the source of your fear.

When you worry about starting the new drug, try to pinpoint your concerns. Are you scared it won't work? Are you worried that you'll never get off of it if it does? Or is it change itself? All of these are issues I've personally grappled with over the years. In fact, I often felt that lupus was such an unpredictable disease to begin with, it felt counter intuitive to introduce yet another "unknown" into the equation. But consider this - if you never try the drug, you'll never know if it works for you, and it will remain an unknown.  So you're still putting yourself at a disadvantage! Also keep in mind that no change has to be permanent. You can explain your long-term concerns to your doctor, and maybe the two of you can come up with a game plan to assess and re-assess the drug's efficacy. (But if it works, I imagine you'll never look back!) 

You can read about my deliberations about starting CellCept here, and you can read about more strategies on how to make good, healthy decisions here. Also note that just because you (or your doctor) pass on a medication the first time around, it doesn't mean that same drug can't be a consideration in the future. Keep an open mind, and hopefully your doctor will, too!


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