Because lupus is an unpredictable disease of flares and remissions, finding the most effective treatment can be tricky. It may take some trial and error on the part of your doctor to find the medications that work best to quell your symptoms. And even a treatment plan that has worked well in the past may need to be modified as your symptoms change.
The best way to take control of your lupus is through shared decision making—partnering with your doctor to jointly manage your disease. Confidence that you’re receiving optimal care is an important part of coping with the challenges of living with lupus. These steps can help you assess if your current treatment plan is right for you.
Keep a diary of symptoms and side effects to discuss with your doctor at each medical visit, advises Betty Diamond, MD, head of the Feinstein Institute’s Center for Autoimmune and Musculoskeletal Diseases at North Shore-Long Island Jewish Health System in Manhasset, NY. “Knowing which symptoms you’re experiencing, how often you’re having them, and what makes them better or worse will help your doctor evaluate how well your treatment is working and if any new tests are needed,” says Dr. Diamond.
At the Doctor’s Office: Always mention your most bothersome symptom first. If a symptom is severe, offer a specific, descriptive example of how it’s disrupting your life. Instead of saying that you’re tired, explain that you get exhausted if you walk more than two blocks.
To make sure you fully understand what’s happening to your body, review any test results with your doctor. “You may feel fine, yet a test may show evidence of some inflammation in your kidneys,” says Dr. Diamond. “As an informed patient, you want to know if your test results are what the doctor expected and if anything has changed since you were previously tested.”
At the Doctor’s Office: Ask your doctor to review the numbers with you and explain what they mean. If any of the results are abnormal, discuss whether it’s time for tweaks in your treatment, such as changing your medications or adding a new therapy to the ones you’re already using. Catching—and treating—lupus complications early helps prevent serious problems down the road.
To make sure you are getting what you need from your treatment, set goals and expectations and evaluate them periodically. For example, when you start on a new medication, ask how long it will take to work. “Make sure your expectations are in sync with those of your doctor and that you know when the results of this treatment plan will be evaluated,” says Dr. Diamond.
At the Doctor’s Office: Don’t be shy about speaking up 1) if you think your treatment isn’t working, 2) if it’s causing problems in any area of your life (including sexual function), or 3) if you have concerns about treatment side effects. If you feel uncomfortable about challenging your doctor, you may want to bring a friend or relative to the appointment to advocate for you. This is particularly helpful if you’re in too much pain to articulate your concerns clearly or are struggling with memory problems. Even if a medication causes significant side effects, never discontinue it without talking to your doctor. Some drugs, such as steroids, must be gradually tapered off.
If you’re not satisfied, consult another doctor.“Lupus treatment isn’t a one-size-fits-all approach,” says Dr. Diamond. “If you’re anxious or unhappy with how your care is being handled or feel that other treatment options aren’t being considered, it’s always appropriate to get a second opinion—and if necessary, a third opinion. After all, it’s your disease and your body, so you deserve the best possible care.”