Understanding Your Healthcare Provider
Reviewed by: HU Medical Review Board | Last reviewed: January 2020 | Last updated: March 2023
Lupus is called “the great imitator” because its symptoms overlap so many other diseases. Adding to the difficulty, lupus symptoms can be vague, come and go, and change over time. In fact, 63 percent of people with lupus are misdiagnosed at first, and 55 percent see four or more doctors before getting a correct diagnosis.1
Despite the difficulties in diagnosis and treatment, there are steps you can take to help yourself. Preparing for your doctor’s visits can help you get a correct diagnosis more quickly, manage your symptoms better, and feel more in control.
You will make it easier for yourself and your doctor if you educate yourself about lupus. Thanks to the internet, this is simple. Online you can learn about the symptoms of lupus, its most commonly prescribed drugs and their side effects, what research is being done, and more. By educating yourself, you will be able to ask deeper questions of your doctor, and better understand what is going on with your body.
Good places to start include the Lupus Foundation of America, the Lupus Research Alliance, the Centers for Disease Control and Prevention, and the Office on Women’s Health.
Keep a symptom diary
It is easy to forget last month’s sudden joint pain, last week’s brain fog, or yesterday’s day-long headache when you are in the doctor’s office. The rash that has been on your neck for days may suddenly disappear. That is why a symptom diary can be so important.
Your diary can be as high- or low-tech as you like, but it should record the day, time, symptom, and severity at a minimum. It may also be helpful to track your sleep, menstrual cycle, and diet. Since lupus results in so many wildly different symptoms and those symptoms can change quickly, a diary will help you and your doctor spot trends.
Show your doctor your symptom list at the beginning of the appointment and explain the reason for your visit. Do not wait until the end.
Bring a list of your medications
Remember to bring a list of all of the drugs and supplements you take, including over-the-counter drugs. Your list should include the drug name, the strength taken, and the amount you take. Your doctor will need this information to help figure out what medicines are working for you and which ones are not. Your pharmacist will need this information to help you avoid any drug interactions.
Be prepared to answer these questions
Your doctor will ask you a series of questions related to the most common symptoms of lupus. The questions may include:2-3
- Do you get rashes after being out in the sun? Do you get a rash on your face that spreads across your cheeks and nose?
- Do you get mouth sores that last a few days or longer?
- Do you feel swelling and pain in your joints? Which ones? How often?
- Does your chest hurt when you breathe deeply?
- Do you sometimes have trouble concentrating or remembering things? How often? How long does this tend to last?
- Do you get headaches?
- Do you sometimes run a fever when you are not otherwise sick?
- Have you noticed any hair loss?
- Do you have dry eyes or mouth?
- How are you sleeping?
- Have you noticed a pattern to your symptoms? For instance, do you feel especially tired after being in the sun? Does something make your symptoms worse or better?
- When did these symptoms start?
Write down your questions
In the days before your doctor visit, write down any questions you have. Give yourself plenty of time to think through what you want to know more about. It may help to think of your doctor as a consultant who knows about lupus while you are the expert on you. Ask about your symptoms, your medications and supplements, what your test results mean, tips for managing your symptoms better, any changes you have noticed, and referrals to specialists.
Be prepared for tests
To diagnose lupus, your doctor will order a series of blood tests to check for the presence of antibodies and inflammation. Your urine will be checked to look for inflammation in the kidneys. Your blood pressure and temperature will be checked. You may also need to have x-rays of your chest if you are experiencing chest pain, or your hands, wrists, elbows, or knees if you are experiencing joint pain. Wearing comfortable clothing with sleeves that can be easily rolled up will make this process easier.