New Lupus Subtyping System Improves Care and Communication

Tuesday, April 9, 2019

In addition to working with pregnant women, Megan Clowse, MD, MPH, also sees non-pregnant patients in the Duke Lupus Clinic, which is directed by Jennifer Rogers, MD, assistant professor of medicine (Rheumatology and Immunology).

Dr. Clowse is excited about a new development in the clinic that has opened up new ways of understanding, treating, and talking about lupus.

Doctors in the clinic noticed that patients often reported pain, fatigue, and insomnia even when laboratory tests didn’t show active disease.

“It used to be that if we didn’t see inflammation, we would discount pain and fatigue and say, ‘That’s not lupus.’ The patients would leave feeling that we didn’t address the issues most important to them,” Clowse says.

So the lupus team decided to separate the different aspects of the disease into Type 1 (inflammation often visible in blood tests) and Type 2 (fatigue and diffuse pain).

“It integrates the patient experience with the inflammatory disease that physicians are used to managing,” Clowse says.

The terms, which were coined by David Pisetsky, MD, PhD, professor of medicine (Rheumatology and Immunology), give doctors and patients a clearer way to communicate about the disease.

Type 1 can include inflammation in the kidneys, which can cause serious problems even in the absence of symptoms. Type 2 may not show up in laboratory tests at all, but the symptoms negatively impact quality of life. Different medicines are used to treat Type 1 and Type 2.

Many patients will experience both kinds of flares, sometimes at the same time and sometimes not. Some patients will experience one type more frequently than the other.

“Subtyping has transformed our lupus care to an extent we didn’t expect,” Clowse says. “It’s totally changed the tenor of the conversation.  When we address the fatigue and chronic pain of Type 2 lupus with the patient, she feels understood and cared for.  We walk out of the exam room feeling like we’ve made a therapeutic connection with the patient.”

Read more in the series

Helping Women with Rheumatic Disease Have Families

Rheumatic Diseases and Pregnancy: How do Outcomes Correlate to Patient-Reported Measures?

Rheumatic Diseases and Pregnancy: Should HCQ Dose Change in Pregnancy?

This story was written by Mary-Russell Roberson, a freelance writer for the Department of Medicine.