Choosing the Right Doctor to Treat Your Lupus

What kind of doctor treats lupus? It's a common question for those who may have or have been diagnosed with systemic lupus erythematosus (SLE) or another form of lupus. Since most people with lupus end up seeing a number of different specialists, it can be helpful to explore the types of specialists who may be involved in your comprehensive medical care.

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Rheumatologists (Autoimmune Disease Specialists)

Typically, lupus is treated by rheumatologists. Rheumatologists are internists or pediatricians (or both) that specialize in the diagnosis and treatment of arthritis and other diseases of the joints, muscles, and bones, as well as certain autoimmune diseases, including lupus and rheumatoid arthritis.

In the United States, rheumatologists (for adults) are first board-certified in internal medicine, a program which requires at least three years of medical residency after medical school. This is followed by a fellowship for two years in rheumatology after which they may become board certified in rheumatology.

Your Healthcare Team

We will begin by talking about the role your rheumatologist will have in your care, but most of the time you will have a team of physicians and therapists who will help you control the symptoms of your disease as well as its limitations.

These other specialists will be discussed later on, but it's important to mention this at the beginning as you consider a rheumatologist. All of these specialists may play specific roles in managing your disease, but it's often your rheumatologist who acts as your home base; the one who coordinates the care given by your entire healthcare team, making sure that all of your concerns are being addressed and that there are no interactions between the medications and other treatments provided.

Your rheumatologist is usually the person you will call if you have any questions or concerns, as well as the person who will help to connect you with other specialists who can help you care for specific aspects of your disease. Studies have found that people who have good patient-physician communication not only feel more empowered in their care but may have better outcomes as well.

Knowing this, it's very important to find a rheumatologist you feel comfortable talking to and who you can communicate well with.

How Rheumatologists Diagnose and Evaluate Lupus

If your primary care doctor suspects you have lupus, you will be referred to a rheumatologist. The rheumatologist will take a thorough history of your symptoms and do a physical exam looking for the signs and symptoms of lupus. They will also run blood tests to check for indications of lupus.

The first blood test a rheumatologist will conduct to check for lupus is called an antinuclear antibody (ANA) test. This test looks for autoantibodies to nuclei in cells. Autoantibodies are antibodies similar to those you would develop after a viral infection or in response to a vaccine, but with lupus, these antibodies are instead directed at the nuclei of some of your own cells. Almost all people with lupus will have a positive ANA test.

A positive ANA result, however, does not necessarily mean you have lupus. Some people who have a positive ANA test have scleroderma, rheumatoid arthritis, mixed connective tissue disease, or a different connective tissue disease. And up to 10 percent of people with no rheumatological disease will have a positive ANA. During the diagnostic process, it can be slow and frustrating, as there are many different connective tissue diseases with considerable overlap between these. Yet making an accurate diagnosis is essential in finding the best treatments.

After a positive ANA test, the rheumatologist will probably run more blood tests to look for other antibodies that can help pinpoint whether or not you have lupus or another condition. The common follow-up to a positive ANA test is the ANA panel, which looks for these antibodies:

  • Anti-double-stranded DNA (anti-dsDNA)
  • Anti-Smith (anti-Sm)
  • Anti-U1RNP
  • Anti-Ro/SSA
  • Anti-La/SSB

Some labs will also test for anti-nucleoprotein, anti-centromere, or anti-histone. Learn more about the specific autoantibody tests which are done to look for lupus.

Rheumatologists also use other tools—such as medical history, a physical exam and skin, and kidney biopsies—to make a lupus diagnosis.

Once lupus is diagnosed, your rheumatologist will work with you to come up with a treatment plan (including lupus medications) that makes sense for you. Rheumatologists help patients prevent and treat lupus flares and reduce organ damage and other problems.

Your treatment may need to change many times over the course of your life, depending on the state of your disease and other factors. Your rheumatologist can help you navigate these changes.

Other Doctors Who Treat Lupus

You will most likely have a rheumatologist who will manage your disease and help to coordinate your visits with other specialists, but most people with lupus will have a team of physicians and specialists who manage their care.

Lupus can affect nearly any organ or organ system in your body, and you may need to have a specialist in that particular area. In addition, you may need to have specialists who can help you cope with the limitations of your disease or the emotional manifestations of your disease. Some specialists who may be part of your team include:

Medical specialists: The type of medical specialists you may see include a:

Skin specialists: Rashes are very common with lupus, and many people have a dermatologist (a skin specialist) as part of their team. Lupus may also cause photosensitivity which your dermatologist can help manage. At some of the larger medical centers, you may be able to see a dermatologist who specializes in the skin manifestations of lupus.

Neurological Specialists: A neurologist may be part of your team in order to address the nervous system manifestations of lupus.

Rehabilitation specialists: Depending on your specific symptoms, you may see a physical therapist to reduce joint pain and stiffness or an occupational therapist. Physiatrists are physicians who specialize in physical medicine and rehabilitation and may be sought out to help coordinate a comprehensive rehabilitation plan. While this is fairly new, we are learning that rehabilitation medicine can make a significant difference in the quality of life for people living with chronic diseases such as lupus.

Primary care physician: Some people continue to have a primary care physician such as a general internist or family practice physician involved in their care. There is a wide spectrum of involvement, with some primary care physicians acting as the coordinator of your care, and others who manage only the types of care you may require that is separate from your lupus. In general, it is very important to continue to see a primary care physician. Regular cancer screening examinations, such as Pap smears and colonoscopies are not any less important after you are diagnosed with lupus.

Mental health: Many people with lupus have a psychologist or psychiatrist as part of their team to help cope with both the psychological manifestations of the disease and your emotional health in coping with a chronic disease. Both anxiety and depression are common in people with lupus and, if present, should be addressed by an expert in these fields.

Reproductive specialists: If you should choose to become pregnant with lupus, you may have a perinatologist (a specialist in high-risk pregnancies) involved in your care.

Pathologists, radiologists, and/or surgeons: As noted earlier, biopsies are sometimes required to confirm a diagnosis of lupus. Some of these are done as a radiology procedure whereas others entail surgical biopsies. A pathologist is the type of doctor who visualizes these specimens under a microscope and does another testing to evaluate your disease.

Support and Coping

What we failed to mention in this list of specialists is perhaps the most important type of care: friends. A psychologist may be able to help you address some of the emotional aspects of your disease, but there is simply nothing like talking to someone else who has walked the walk you are taking. Learn about the ways you can find support with lupus, from support groups to online lupus communities. We also need to note that men get lupus too, and face unique challenges.

Communicating With Your Team

Most people with lupus will require care for their disease for the rest of their life, so it's critical to find a health care team who you respect and trust. Playing an active role in your care and being your own advocate not only reduces the stress of living with lupus but may even make a difference in your outcome.

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