DIAGNOSIS, TREATMENT, & STEPS TO TAKE

Diagnosis of Systemic Lupus Erythematosus (Lupus)

Lupus can be difficult to diagnose because it has many symptoms that come and go and can mimic symptoms of other disorders or diseases. When speaking to your doctor about your symptoms, be sure to include symptoms that may no longer be present. Your doctor may need to rule out other causes before diagnosing lupus. At this time, no single test diagnoses lupus. Doctors can diagnose the condition by:

  • Asking about your medical history and symptoms, and, if necessary, reading your previous medical records.
  • Asking if anyone in your family has lupus or other autoimmune diseases.
  • Performing a complete physical exam.
  • Taking samples of blood for laboratory tests, such as:
    • Antinuclear antibodies (ANA), a sensitive test for lupus. Almost all people with lupus with have a positive ANA. However, having a positive ANA does not mean you have lupus since totally healthy people can have a positive ANA.
    • Antiphospholipid antibodies, anti-smith, and anti-double-strand DNA antibodies, which doctors order when you have a positive ANA and can help determine if you have lupus.
    • Complete blood counts, to check for low platelet counts, low red blood cell counts, and low white blood cell levels, which can happen if you have lupus.
    • Metabolic panel to look for changes in kidney function.
  • Taking urine samples to check for abnormal levels of protein in the urine.
  • Performing a biopsy of the skin or kidney (when labs indicate there may be a problem with the kidney) by taking a small sample of tissue to examine under a microscope.

Treatment of Systemic Lupus Erythematosus (Lupus)

Doctors treat lupus based on your symptoms. The goal of treatment is to:

  • Manage symptoms.
  • Prevent, limit, and stop flares.
  • Maintain the lowest level of disease activity, and, if possible, achieve complete remission.
  • Prevent or slow organ damage.
  • Improve your quality of life.

Lupus is a chronic (long-lasting) disease, and there is no cure at the present time. However, treatments have improved dramatically, giving doctors more choices to manage the disease. Because symptoms can change, and treatments can have side effects, your doctor may recommend a combination of treatments to manage lupus.

Treatments for lupus may include the following.

Medications

  • Anti-inflammatory drugs help treat pain or fever.
  • Antimalarials, which are used to prevent and treat malaria, have been found to be useful for treating fatigue, joint pain, skin rashes, and inflammation of the lungs caused by lupus. These drugs may also prevent flares from recurring.
  • Corticosteroids help to lower inflammation in the body. Because they are potent drugs, your doctor will prescribe the lowest dose possible to achieve the desired benefit. Doctors prescribe these medicines in the following forms:
    • Liquid or pills that you swallow.
    • Cream that you apply to the skin.
    • Injection.
    • Intravenous (IV) infusion that doctors give to you through a tube in your vein.  
  • Immunosuppressants help suppress or curb the overactive immune system, and they may be given by mouth or by IV infusion. The risk for side effects increases with the length of treatment.
  • B-lymphocyte stimulator (BlyS) protein inhibitor, a type of biologic medication, can help reduce the activation and life span of abnormal B-cells in the body, which may help control lupus. >Inhibitor to the type I interferon receptor, a type of biologic medication, that may improve skin, joint, and overall lupus symptoms.

You may need to take medicines to treat or prevent complications related to lupus or side effects from the medicines that treat the disease, such as heart disease, high blood pressure, osteoporosis or other bone problems, or infection.

In addition, your doctor may prescribe medications that are typically used to treat other diseases that have symptoms similar to those of lupus. For example, medications that doctors prescribe for rheumatoid arthritis may help improve some of the symptoms of lupus.   

Alternative and Complementary Therapies

Some people may try alternative and complementary therapies to improve symptoms. However, research has not definitively shown whether they help or treat lupus. Examples include:

  • Special diets.
  • Nutritional supplements.
  • Fish oils.
  • Ointments and creams.
  • Acupuncture.
  • Chiropractic treatment.
  • Homeopathy.

Some over-the-counter medicines, herbs, and supplements can interfere with other medicines you are taking. Before beginning any new therapy, speak with your doctor.

No matter what treatment you receive, it is important that you have regular visits with your doctor to monitor your disease and potential side effects of prescribed therapies. Never stop your medicines or treatments without speaking to your doctor.

Who Treats Systemic Lupus Erythematosus (Lupus)?

Most people will see a rheumatologist for their lupus treatment. A rheumatologist is a doctor who specializes in rheumatic diseases, such as arthritis and other inflammatory or autoimmune disorders. Clinical immunologists, doctors who specialize in immune system disorders, may also treat people with lupus. Other health care providers may provide treatment, including:

  • Primary care providers, such as a family physician or internal medicine specialist.
  • Mental health professionals, who provide counseling and treat mental health disorders such as depression and anxiety.
  • Nephrologists, who treat kidney disease.
  • Cardiologists, who specialize in treating diseases of the heart and blood vessels.
  • Hematologists, who specialize in blood disorders.
  • Endocrinologists, who treat problems related to the glands and hormones.
  • Dermatologists, who specialize in conditions of the skin, hair, and nails.
  • Pulmonologists, who treat lung problems.
  • Neurologists, who treat disorders and diseases of the spine, brain, and nerves.

Living With Systemic Lupus Erythematosus (Lupus)

Living with lupus can be physically and emotionally hard. At times, you may think that your friends, family, and coworkers do not understand how you feel. You may experience sadness and anger. A good place to start managing the disease is working with your doctor to determine the best treatment plan and taking your medications as prescribed. But keep in mind, many people with lupus live wonderfully happy lives, and therefore a positive outlook is very important.

You can do several things to help you live with lupus:

  • Learn to recognize the warning signs of a flare so that you and your doctor might reduce or prevent them. Warning signs include:
    • Increased tiredness.
    • Joint swelling.
    • Pain.
    • Rash.
    • Fever.
    • Abdominal pain.
    • Headache.
  • Eat a healthy well-balanced diet rich in fruits, vegetables, and whole grains.
  • Exercise to help keep your body strong; however, talk to your doctor before starting an exercise program.
  • If you smoke, quit. This will help lower your risk for heart disease that can be a complication of lupus.
  • Protect yourself from the sun – sometimes, exposure to the sun can cause a flare. Wear protective clothing, such as a hat or long-sleeved shirts, and use sunscreen any time you go outside.
  • Reach out to online and community support groups.
  • Keep the lines of communication open. Talk to your family and friends about your lupus to help them understand the disease.
  • Ask for help when you need it.
  • Take a break from focusing on the disease, and spend some time doing activities you enjoy.
  • Lower your stress – try meditating, reading, or deep breathing. Remember, stress can trigger a flare.
  • Make changes if you need to in your work environment so you can try to continue to work, such as:
    • Creating a flexible schedule – for example, work from home or start the workday later.
    • Working part time.
    • Adjusting your work area so that you are more comfortable.

Most people with mild disease or who are in remission can usually participate in the same life activities they did before they were diagnosed.  

Pregnancy and Contraception for Women With Lupus

Most women with lupus can have healthy pregnancies if the disease is under control. If you start to plan a pregnancy, talk to your doctor so you can be as healthy as possible before becoming pregnant. Close monitoring during pregnancy is essential, especially if you have low platelets, antiphospholipid antibodies, anti-SSA/Ro antibodies, high blood pressure, lung or heart problems, or kidney disease.

It is important to find an obstetrician who manages high-risk pregnancies and has experience working with women who have lupus. Some medications used to treat lupus are not compatible with pregnancy. It is important that you discuss your lupus medications with your doctors before getting pregnant to ensure that all of your medications are safe to use during pregnancy.

Research shows that birth control pills do not increase the risk for severe flares among women with lupus, but estrogen-containing pills are not recommended for women with antiphospholipid antibodies. Talk with your doctor about your antibody test results before starting oral contraceptives.