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.
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 using a simple pen-and-paper method, 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. The Lupus Foundation of America also offers a Lupus Impact Tracker, which is free to download.
It’s important to be prepared before you head to a doctor’s appointment. Health professionals often have tight schedules, so make sure to 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 over time, try writing down your questions and concerns before you talk to your doctor. This will help you stay focused during the conversation and ensure 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.
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 let the scheduler at the checkout desk know if you have any specific days of the week or times of day when you absolutely cannot make it to an appointment with your doctor. If your schedule is flexible, it might be easier to set up regular appointments with your specialist. Finally, ask the scheduler or nurse whether there is anything you should do in preparation for your next appointment.
Most providers have a patient portal you can use to get in touch with your rheumatologist between appointments. Patient portals should only be used for nonemergency questions and are not a replacement for an in-person or telehealth visit. They are best used for getting answers to simple questions or helping you determine if a concern requires a more in-depth discussion with your provider. Patient portals can also help you avoid waiting on hold over the phone for long periods of time or waiting 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. Many providers’ portals offer access via an app, which you can download on your phone or tablet in addition to logging in on a computer.
Researchers are investigating new treatments for lupus. Your doctor may be able to tell you about any advances in treatments that could be beneficial to you. Depending on your circumstances and the severity of your condition, you may even be eligible to enroll in a research study on SLE and receive new treatments before they become widely available. If you read about a treatment that seems promising, talk with your rheumatologist to see whether it might work for 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. Trials of different medications for a period of time are not uncommon in the treatment of rheumatic conditions.
Because SLE is a lifelong illness that affects the immune system, medications and specialized therapies can add up financially over time. 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 what they were prescribed, or put off filling their prescriptions because of the expense. Luckily, there are 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 using one pharmacy chain over another or by using an online pharmacy.
Having an autoimmune disease can be frustrating and isolating, taking 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 living with a chronic (long-term) disease. Consider finding a therapist who specializes in counseling people with chronic illnesses. If you believe you are dealing with 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.
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 own care. If you are a person of color living with lupus, become familiar with how race plays 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.
On MyLupusTeam, the social network for people with lupus and their loved ones, more than 218,000 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? Share your experience in the comments below, or start a conversation by posting on your Activities page.