Understanding lupus: a disease with a thousand faces

Lupus: a disease with highly varied manifestations

Lupus is an autoimmune disease.

What is an autoimmune disease?

Normally, our immune system acts as a shield: it protects us against viruses, bacteria, and other external threats. In an autoimmune disease, this system malfunctions. It can no longer distinguish between what is foreign and what belongs to our body… and starts attacking our own cells. This causes inflammation that can affect one or several organs, such as the skin, joints, or kidneys in the case of lupus. Each autoimmune disease is different, but all are based on the same principle: a defense system that targets the wrong thing.

“Each patient is different,” explains Prof. Soyfoo. “Some only have skin involvement, others joint pain, and still others a systemic form affecting multiple organs, with very variable degrees of severity,” he adds.

Among the most commonly affected organs are the skin, joints, and kidneys. The severity of the disease is often linked to kidney involvement, which can range from mild urinary abnormalities to rapidly progressive kidney failure requiring dialysis. However, lupus can sometimes present with rarer symptoms, such as neurological disorders, which may delay diagnosis because they are mistakenly interpreted as psychiatric conditions.

Despite this complexity, care is always personalized: “Each patient must be assessed globally and followed by a multidisciplinary team for optimal management,” emphasizes Prof. Vandergheynst.

A diagnosis that can take time

The diagnosis of lupus takes on average 3 to 5 years. Yet, as Prof. Vandergheynst points out, the diagnosis itself is not necessarily difficult to establish… provided it is considered.

“The main obstacle is thinking about the disease,” he explains.

In other words, once lupus is suspected, medical tools generally allow confirmation fairly quickly.

These include blood tests, which look for antibodies (proteins produced by the immune system) abnormally directed against the body, and sometimes tissue samples (from the skin or kidneys), analyzed under a microscope to better understand the involvement and choose the most appropriate treatment.

The main obstacles to diagnosing lupus

Non-specific symptoms: fatigue, diffuse pain, sensitivity to sunlight, mouth ulcers… common and recurring signs in the general population that do not immediately suggest an autoimmune disease.
A disease that is still insufficiently known: by the general public, but also sometimes by primary care health professionals.
Symptoms that are sometimes minimized: particularly in young women, who are most affected, whose health condition is often attributed to stress or anxiety.
A fragmented view of the disease and its management: because it can affect multiple organs, lupus may be managed by several specialists (rheumatologists, nephrologists, dermatologists, internists, gynecologists) who, if they do not communicate with each other, work in silos and have only a partial view of the disease.

Comprendre le lupus - Diagnostic - prise de sang - Hôpital Erasme - H.U.B

The need for coordinated and personalized care

At the Brussels University Hospital (H.U.B), lupus care is based on collaboration between several specialists. The entry point varies depending on the symptoms: joint pain, skin rashes, neurological or general symptoms. Then, a multidisciplinary team coordinates to assess organ involvement and propose the most appropriate treatment.

“We do not cure lupus, but we can control flares, limit damage, and sometimes achieve prolonged remission,” explains Prof. Soyfoo.

Long-term follow-up also includes preventing complications related to treatments, such as the effects of corticosteroids on bones or metabolism, and specific aspects such as pregnancy planning.

Comprendre le lupus - Grossesse - Hôpital Erasme - H.U.B

Lupus and pregnancy: a balance to build together

Lupus mainly affects young women, often of childbearing age. The question of pregnancy is therefore central… and sometimes difficult to address. Yes, pregnancy is possible with lupus, but it must be carefully planned and closely monitored.

What are the risks?

When the disease is not well controlled, pregnancy may lead to:

Lupus flares: recurrence or worsening of symptoms
Increased risk of preeclampsia: a complication where blood pressure rises and may affect the placenta
Placental problems: the placenta may function less effectively, which can slow the baby’s growth

In about 40% of cases, lupus is associated with antiphospholipid syndrome: the presence of autoantibodies (immune system proteins directed against the body) that increase the risk of recurrent miscarriages or thrombosis (formation of blood clots). Some patients must then take anticoagulants (blood-thinning medications) during pregnancy, requiring close monitoring.

Treatments to be adjusted

Not all medications used for lupus are compatible with pregnancy. Some are teratogenic: they can cause malformations in the baby. Others may reduce fertility. It is therefore important to plan the pregnancy and adjust treatments in advance.

Essential specialized follow-up

Coordination between rheumatologists, internists, and obstetricians is crucial to manage treatments safely and ensure a safe pregnancy and delivery for both mother and baby.

An intimate decision… sometimes difficult to support

Discussing the desire to have a child can be complex. For patients, it can be a source of concern. For doctors, it involves significant responsibility:

“We are not here to prevent patients from living their lives. But in some situations, giving our approval — or on the contrary advising against pregnancy — represents an important responsibility,” says Prof. Vandergheynst.

In some cases (active disease, severe kidney involvement), pregnancy is strongly discouraged. In others, the decision is more nuanced. The goal is never to punish or make anyone feel guilty, but to enable an informed choice, taking into account risks and the patient’s life plan.

Promising advances

Treatments for lupus have evolved considerably in recent years. Personalized medicine and biotherapies are opening new perspectives, for example:

Hydroxychloroquine: a long-standing, low-cost treatment that effectively reduces the frequency of flares.
Targeted biotherapies: medications such as belimumab (Benlysta) and nivolumab (Opdivo) act on specific molecules involved in the disease, reducing the use of corticosteroids and improving quality of life.
Precision medicine: in the future, treatments could be adapted to the biological profile and molecular expression of each patient, rather than to the disease in general. Personalized medicine is not yet standardized, but it offers great promise with more precise and effective treatments and fewer side effects.
Non-invasive biomarkers to monitor kidney involvement could also reduce the need for frequent biopsies.

The impact of lupus on daily life

Beyond physical symptoms, lupus profoundly affects daily life. Chronic fatigue, pain, limitations in certain physical activities, and constraints related to sun exposure can be very restrictive. The treatment itself, particularly corticosteroids, can alter physical appearance and affect body image.

Lupus also has psychological, social, and professional consequences. Patients may have to reduce their working hours or modify their life plans, including pregnancy planning. Their sexual and emotional life may also be affected by the disease. Listening, therapeutic education, and comprehensive support are essential to help patients cope with these aspects.

A complex disease, but one that can be treated

Lupus is a complex, variable disease that is often difficult to diagnose. Successful management relies on multidisciplinary care, personalized treatments, and comprehensive patient support. Thanks to recent advances in biotherapies and precision medicine, new perspectives are emerging to improve quality of life and enable everyone to live fully despite the disease.