Lupus

What it is

Lupus is an autoimmune disease in which the immune system attacks the body's own tissue, causing inflammation that can affect the joints, skin, kidneys, heart, lungs, blood vessels and brain. Symptoms come and go, and new ones can appear over time [1].

Why this guide is written for Black patients

Lupus is more common in African Americans than in white people, and women get the disease about nine times more often than men [1]. Black people, along with men, Chinese people and Hispanic people, are also more likely to have serious organ system involvement [1].

The size of the difference is stark. In one county-wide study, incidence among Black individuals was 15.5 per 100,000 person-years against 2.8 for white individuals, and prevalence was 241.0 per 100,000 against 55.2 [3]. Black patients develop the disease earlier than white patients, multiple cohorts show greater incidence and prevalence of kidney disease in Black and Hispanic patients, and cumulative mortality is significantly higher among Black patients, who died on average 6.8 years earlier than white patients [3].

Kidney involvement is the specific thing to watch. Lupus can damage the kidneys in a way that leads to changes in kidney function, including kidney failure, and that is called lupus nephritis [1].

What to ask a clinician

• What blood and urine tests have been done, and what did they show?
• Has my urine been checked for protein, and how often will that be repeated?
• Am I on hydroxychloroquine, and if not, why not [2]?
• What is my steroid dose, what is the plan for reducing it, and over what timescale [2]?
• What does a flare look like for me specifically, and what should I do on the day one starts?

What good care looks like

Diagnosis takes patience, because no single test diagnoses lupus [2]. Clinicians use medical history, family history, physical examination and blood tests together, and antinuclear antibodies, or ANA, is described as a sensitive test for lupus [2]. Sensitive is not the same as specific, so a positive ANA on its own is not a diagnosis and a rheumatologist is the person to interpret it.

Treatment has three familiar pieces. Antimalarial drugs such as hydroxychloroquine have been found useful for treating fatigue, joint pain, skin rashes and inflammation [2]. Corticosteroids lower inflammation in the body, and doctors prescribe the lowest dose possible to achieve the desired benefit [2]. Immunosuppressants help curb the overactive immune system and are given by mouth or by infusion [2].

Good care also teaches you to see a flare coming. Learn to recognize the warning signs of a flare so that you and your doctor might reduce or prevent them, and those signs include increased tiredness and joint swelling [2]. Sun matters too: exposure to the sun can sometimes cause a flare, so protecting yourself from it is part of the treatment rather than an optional extra [2].

Because the kidneys are the organ most at risk, a urine test looking for protein is not a formality. Ask when the last one was.

When it is urgent

Get seen urgently for chest pain, shortness of breath, coughing blood, a seizure, sudden confusion, severe headache, or new weakness or numbness. Get seen urgently for a fever while on immunosuppressant medicine, since infection can move quickly.

Book quickly, not urgently, for swelling in the legs or around the eyes, foamy or frothy urine, passing much less urine, or a sudden rise in blood pressure, because those point at the kidneys.

What to do next

Lupus care belongs with a rheumatologist, and the wait for a first appointment is often long, so ask for the referral at the appointment where lupus is first mentioned rather than the next one.

See Black rheumatologists. Keep a one-page timeline of symptoms with dates, take photographs of rashes, and bring the results of any blood or urine test you have already had, because no single test names lupus [2] and a scattered record makes a hard diagnosis harder.