When you’ve been diagnosed with systemic lupus erythematosus (SLE), seeking the best care for your condition is a priority. An autoimmune disease like SLE — the most common form of lupus — attacks your body’s organs and tissues, requiring specialized care, follow-ups, and a treatment plan.

You may have concerns about how your body has changed, what to expect, and what you can do to improve your quality of life. But where do you start? Here are tips for getting the best care for your lupus and important questions to ask your doctor.

1. Track Your Lupus Symptoms

Each person’s experience with SLE is unique, and only you know what feels new or different in your body. Keeping a record of your symptoms can be a helpful way to identify trends in how you’re feeling, in addition to informing your doctor about whether your condition is improving or getting worse over time. By sharing the information you record with your doctor, you can play an active role in improving the health care and treatment you receive.

Symptom tracking doesn’t have to be complicated. You can keep track of good and bad days, flare-ups, and how long your symptoms last by simply using pen and paper, or you can look into one of the many apps available for your smartphone or tablet.

Tracking apps can be useful for making quick notes about triggers, symptoms, side effects, and daily activity. Additionally, the Lupus Foundation of America offers a free-to-download worksheet called Lupus Impact Tracker, which you can use to discuss your symptoms with your doctor.

2. Prepare for Your Health Care Appointments

It’s important to be prepared before you head to a doctor’s appointment. Health professionals often have tight schedules, so be ready with your questions and any new information you want to share. Be honest, and ask questions so you feel confident about managing your care between appointments.

In addition to tracking symptoms of lupus, try writing down your questions and concerns before you talk to your doctor. This approach will help you stay focused during the conversation and make sure you get answers to your questions. If you feel nervous or unsure about whether you’ll remember the information your doctor shares with you, consider bringing a close friend or family member with you to help you recall any instructions or treatment details after your appointment.

3. Questions To Ask Your Rheumatologist About Lupus

Asking questions about lupus during your health care appointments can help ensure that you and your doctor are on the same page and that you get the information you need. You may want to prepare to ask questions like these at your next rheumatologist appointment:

• Based on my current diagnosis, are there new symptoms I should look out for?
• What are my treatment options, and what are the side effects of each?
• What can I do to reduce my risk of side effects from this treatment?
• Can I do anything at home to help myself feel better and prevent lupus flares?
• Based on my current diagnosis and treatment plan, do I need to avoid any exercise, foods, or over-the-counter medications, vitamins, or supplements?
• What are the latest treatment advances for lupus?

Researchers are investigating new treatments for lupus. Your doctor may be able to tell you about any new treatments that could be beneficial to you. Lupus treatments continue to evolve, so it’s important to discuss advances that could be integrated as part of your overall care. Keep in mind, a treatment that may work for one person may not work for another. Your doctor might suggest trying different medications for a while to find out which one works best for you. This approach is sometimes how a treatment plan is shaped for conditions like lupus.

4. Schedule Follow-Up Appointments Right Away

Before you leave your rheumatologist’s office, take a moment to make your next appointment. Doing so may help you avoid long wait times between appointments and give you peace of mind that you have prioritized your lupus care. At the onset, your provider may choose to see you every four to six weeks to closely track your symptoms and response to therapy. Once your disease is stable, follow-up appointments may be spread out every three to four months.

Keep your calendar handy, and tell the scheduler at the checkout desk about any specific days of the week or times of day when you can’t make it to an appointment with your rheumatology provider. If your schedule is flexible, it might be easier to set up regular appointments. Finally, ask the scheduler or nurse if there’s anything you should do to prepare for your next appointment.

5. Take Advantage of Your Provider’s Patient Portal

Most providers offer access to your medical records through an app, which you can download on your phone or tablet in addition to logging in on a computer. This kind of tracking system is often called a patient portal, and you can use it to get in touch with your rheumatologist between appointments. Patient portals should be used only for nonemergency questions and don’t replace in-person or telehealth visits. They’re best used for getting answers to simple lupus questions or helping you determine if a concern requires a more in-depth discussion with your provider.

Patient portals can help you avoid a lengthy wait on hold over the phone or for a nurse to return your call. The patient portal also makes it easy to access information about your past visits, get blood test results, and confirm your upcoming appointments.

6. Research Ways To Save Money on Medications

Because SLE is a lifelong illness that affects the immune system, medications and specialized therapies can add up. One study from Arthritis Care & Research showed that people living with SLE were twice as likely as those not affected by the disease to skip doses, take less medication than prescribed, or put off filling prescriptions because of the expense.

Learn about ways you can save money on medications, lab work, and other needs.

Talk to your doctor and your insurance provider about other ways to save on your prescriptions. You may be able to save money by choosing one pharmacy chain over another or using an online pharmacy.

7. Look for Long-Term Support

Having an autoimmune disease can be frustrating and isolating and may take a toll on your mental health. That’s why it’s essential to have a support system to help manage the emotions and feelings that come with having a long-term or chronic disease. Consider finding a therapist who specializes in counseling people with chronic health conditions. If you believe you’re experiencing anxiety or depression, speaking with a professional can help.

In-person and online communities like MyLupusTeam are also good places to find support. You can search for national and state support groups to connect with others in your area. You can also find specific support groups, such as those for youth, men, or certain ethnic groups.

8. Advocate for Yourself

Self-advocacy can help you receive the best care for your lupus. You can advocate for yourself by learning more about SLE symptoms and treatments. Ask questions, and research your condition so you can play an active role in your care. If you’re a person of color, become familiar with how race and other factors play a role in your condition and treatment. The more you know about life with SLE, the bigger the impact you can have on the care you receive.

Talk With Others Who Understand

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 225,000 members come together to ask questions, give advice, and share their stories with others who understand life with systemic lupus erythematosus.

Are you living with SLE and trying to get the best care? What approaches have you tried? Share your experience in the comments below, or start a conversation by posting on your Activities page.