Lupus what are the symptoms and treatments

Lupus is a rare and chronic autoimmune disease that affects several organs and is still incurable. Skin rash and joint pain are the main symptoms. Appropriate treatments make it possible to control flare-ups, to better live with them.

What is lupus?

Lupus is an autoimmune disease. “When it breaks out, the body has an inappropriate immune reaction against its own components, explains Professor Zahir Amoura, internal medicine specialist at the National Lupus Reference Center . It acts as if defending itself against an infection and produces specific antibodies. This leads to an inflammatory reaction of certain organs. This disease affects between 20,000 and 40,000 people in France, according to Health Insurance .

We speak of “systemic” or systemic lupus when the disease affects several organs at the same time. “Be careful not to confuse this systemic lupus with isolated cutaneous lupus, a benign autoimmune dermatological disease too, but which only affects the skin”, underlines the specialist.

What are the symptoms of lupus?

Lupus can affect several organs: the skin, the joints, the kidneys most often. In general, these main symptoms are found.

  • Skin rash. “The skin presents characteristic red plaques on the regions most exposed to the sun (face, sometimes hands or décolleté), because ultraviolet rays increase the reaction of the skin”, explains Professor Amoura. On the face, these rashes have the characteristic appearance of a carnival mask in the form of butterfly wings, around the eyes, on the nose and cheekbones.
  • Joint pain. The joints (often those of the hands, fingers and wrists) are affected by painful swelling. We are talking about polyarthritis**.
  • Kidney inflammation. It is common and can be detected by an analysis showing albumin in the urine.
  • Great tiredness. “Along with joint pain, it is the most disabling symptom in professional and daily life”, testifies Johanna Clouscard, president of the Lupus France association.

To make the diagnosis of systemic lupus, doctors look, in addition to these symptoms, for the presence of characteristic antibodies, which are absent in healthy people. These are the nuclear antibodies which are directed towards the nuclei of the cells, but above all the native anti-DNA antibodies , which recognize the DNA that we have in our nuclei. Their presence is specific for systemic lupus.

General practitioners can diagnose lupus, with the help of specialist doctors who will examine the organs affected by the inflammation. “Lupus is generally well known these days, there are no longer any major delays in diagnosis  ,” says Johanna Clouscard. There is also an expert center for rare diseases dedicated to lupus in Paris. Patients can make an appointment themselves or be referred by their doctor.

Who is affected by lupus?

Systemic lupus or systemic lupus is a rare disease which affects, in France, 47 people out of 100,000. Among them, nine out of ten are women . “The most concerned are those who are said to be “of childbearing age”, between 15 and 35 years old, with a peak of 20 to 35 years old”, explains Professor Amoura. It is probably linked to the important role of estrogens (female sex hormones) in triggering the disease and flare-ups, ”explains the specialist.

Systemic lupus is recognized as a long-term condition (ALD) by National Health Insurance.

What treatment is there for the symptoms of lupus?

Cutaneous lupus disappears on average after 2-3 years. But systemic lupus is a chronic disease that currently has no cure, although it disappears in some women with menopause . Nevertheless, treatments exist against its symptoms to limit flare-ups and change the course of the disease.

Hydroxychloroquine is the basic treatment. Taken continuously, it decreases the activity of the immune system and the frequency of outbreaks. It is also prescribed for isolated cutaneous lupus.

Corticosteroids are indicated in acute forms of the disease. But their many side effects require increased monitoring. Other medications are prescribed, during flare-ups, for a “graduated response” depending on the organs affected. These can be immunosuppressants or non-steroidal anti-inflammatory drugs for a short time.

It is also recommended to avoid tobacco and exposure to ultraviolet rays of the sun . Finally, “we must not forget the vaccines , essential in lupus disease, because the excess mortality linked to lupus comes from infections”, explains Dr. Laurent Chiche, specialist in autoimmune diseases in Marseille. It is therefore crucial to update all your mandatory vaccinations , and strongly recommended to be vaccinated against hepatitis B, hepatitis A, pneumococcus, meningococcus, papillomavirus , haemophilus influenzae, seasonal flu … and the Covid.

What causes lupus?

The causes of lupus are not yet known. Nevertheless, certain triggering factors for the disease or its flare-ups have been identified. Schematically, it is the meeting between a genetic predisposition and an external agent.

  • The presence of a lot of estrogen in the body, such as during pregnancy .
  • Certain drugs can induce the onset of lupus, such as certain antiepileptics still used, such as tegretol.
  • Exposure to ultraviolet rays from the sun .
  • Certain viral infections also, such as the Epstein-Barr virus (responsible for mononucleosis).
  • genetic predisposition. “We have not identified a single genetic factor in adults,” explains Professor Amoura. Nevertheless, several susceptibility factors can combine and trigger the disease or an attack, when one is exposed to an external factor such as taking certain drugs or certain viruses, in particular that of infectious mononucleosis (Epstein Barr virus)”.

Where is the scientific research on lupus?

Research is moving in three directions.

Better treat the symptoms. Biotherapies, treatments that very specifically target the immune system, are for some already authorized in France. Others are under study.

General disease management. As with any chronic disease, treatments alone are not enough to improve day-to-day well-being. Studies are underway on the benefits of sport, links with emotional or psychological shocks, for example. Patients are also encouraged to become actors in their follow-up. Dr. Chiche notably created the Lupus Living Lab , a community of patients and caregivers who discuss the experience of the disease on a daily basis. It also offers an application that allows you to note, between two consultations, the symptoms that “can be forgotten” for the most personalized follow-up possible.

The cause of the disease. Alongside the increasing number of clinical trials to test new therapeutic agents, Dr Chiche mentions the importance of promoting “a lot of fundamental research” around the causes of lupus, particularly in the fields of epigenetics or, in particular in France, with scientific work currently looking into the possible role of the intestinal microbiota (all the microorganisms living in the intestine) in this disease.