10 facts about lupus everyone needs to know

A lot of people have heard about lupus, but few people really know about the disease. Proof of this is that there are many myths and doubts surrounding the subject. For example, is this a disease that affects only women? Is it contagious? What symptoms do you have? Is there a cure? All these and other questions will be clarified below.

What is lupus?

Evandro Mendes Klumb, coordinator of the Lupus Commission of the Brazilian Society of Rheumatology (SBR) and president of the Society of Rheumatology of Rio de Janeiro, highlights that systemic lupus erythematosus (SLE), or simply lupus, is an inflammatory, autoimmune and chronic disease.

Below you know better the main facts about this disease:

1. The main characteristic of the disease is the intermittence (interleaving) of its clinical manifestations.

Klumb explains that the person with lupus usually has phases in which they present symptoms, called by doctors as “periods of activity” and, other times, in which there is no manifestations of the disease, called the period of “remission”.

Precisely for this reason, “even if the person does not have any symptoms, it is not possible to say that the disease is ‘cured’, as the immunological alterations are still present and can determine the return of symptoms again”, highlights the doctor.

“It is necessary to maintain medical control on an ongoing basis with the use of one or more drugs, for most people with lupus, which help to keep the disease under control”, adds the specialist.

2. Lupus is an inflammatory and autoimmune disease.

Evandro Klumb clarifies that lupus can present symptoms in various organs, which are due to inflammation, caused by an imbalance in the person’s immune system, causing it to produce an increased amount of antibodies.

“It is exactly these antibodies that have the ability to react against proteins in our own body, which establish the concept of an autoimmune disease”, explains the specialist from the Brazilian Society of Rheumatology.

3. Lupus depends on genetic inheritance but is related to environmental factors.

It is worth mentioning that the immune system is designed to protect the human body from bacteria, viruses and other pathogens. In the case of autoimmune diseases, in general, it identifies parts of the body itself as pathogens and attacks them.

But it is not possible to define a single cause for this initial “mistake” in the immune system. It is believed in the combination of genetic tendencies with environmental factors – among them, not only ultraviolet irradiation, but also tobacco, as highlighted by specialist Klumb.

4. There are two types of lupus: systemic and cutaneous.

Evandro Klumb highlights that there are two types of lupus: one is systemic, characteristic for presenting symptoms in various organs, such as skin, lungs, heart, kidneys, in addition to joints and others, and may or may not have a serious course. “In this systemic form, general symptoms such as tiredness, discouragement, anemia, low-grade fever and weight loss are also common”, he highlights.

The second type, according to the doctor, is a disease that only presents symptoms in the skin, that is, there is no manifestation in the other organs and is called cutaneous lupus.

5. Lupus can have very different symptoms.

Evandro Klumb reinforces that systemic lupus erythematosus (SLE) triggers symptoms that can appear in different organs, slowly and progressively (months) or faster (in weeks) and vary with phases of activity and remission.

The rheumatologist highlights that, in the early stages of SLE, the symptoms that most bother you are:

Also according to Klumb, most people with SLE can also have, at some point:

• Joint pain, sometimes also with swelling (arthritis).

In addition, in general, as rheumatologist Klumb points out, at least 50% of people with lupus will have, at some point in the disease:

• Inflammation in the pleura (membrane that covers the lungs) or pericardium (membrane that covers the heart);
• Inflammation in the kidneys, which does not necessarily determine pain, but rather the loss of protein in the urine, swelling in the legs and face, high blood pressure and, in the most severe cases, kidney failure requiring hemodialysis.

In the case of cutaneous lupus, the symptoms only occur on the skin. In general, it can happen:

• Hypersensitivity to light (redness/inflammation of the skin in parts exposed to light, such as the face and neck);
• Stains;
• Hair loss.

Expert Klumb points out that any organ or tissue can be involved in the inflammation that occurs in lupus, but some are particularly worrisome. “On the skin of the face, for example, a person can get marks and, therefore, stigmatized, which determines a decrease in self-esteem, especially for women”, he says.

6. Lupus is more prevalent among women than men.

Evandro Klumb explains that the disease can occur in people of any age, race and sex, but women are much more affected, especially in the age group between 20 and 45 years.

Also according to the doctor, it is estimated that 120,000 to 250,000 people have Systemic Lupus Erythematosus (SLE) in Brazil. “1 in every 1,000 women in Brazil have Systemic Lupus Erythematosus (SLE). In Rio de Janeiro, it is estimated that the disease affects between 8 and 14 thousand people. In São Paulo, experts estimate the existence of 12,000 to 18,000 SLE carriers”, adds Klumb.

7. Treatment for lupus varies depending on the severity of the condition.

The diagnosis of SLE is made by a rheumatologist who recognizes the characteristic symptoms of the disease, in association with tests that include a blood count, evaluation of the kidneys and research into the disease’s own immunological disorders.

The treatment of lupus patients, according to Evandro Klumb, depends on the type of manifestation presented and must be individualized. “The goal is to rebalance the immune system, as well as control pain and inflammation. And treatment starts with patient awareness,” he explains.

The intensity with which this rebalancing (of the immune system) is sought and the amount of medication needed for this control fundamentally depends on the severity and extent of the disease, according to the doctor:

Initial and milder cases: only chloroquine or hydroxychloroquine (which are immunomodulators) and analgesics can be used.

More advanced or more severe cases: it may be necessary to use corticosteroids (cortisone), immunosuppressants and, more recently, also some drugs called biological agents such as ‘missile’ therapy or ‘targeted’ therapy.

The specialist adds that some measures are essential for the immune rebalance of the lupus carrier:

• Protective measures against glare or sunlight (using photoprotectors),
• smoking cessation,
• Escape from stressful conditions,
• balanced diet,
• adequate rest,
• Regular physical activity.

8. It is still not possible to talk about curing lupus, but about controlling the disease.

Currently, it is still not possible to talk about curing lupus, but about controlling the disease, says Klumb. “There are countless people with SLE who only use chloroquine (medicine) and general measures with good disease control,” he says.

However, the doctor points out, most will need regular follow-up, every three or six months, with a rheumatologist. “Because, in the event of a reactivation of the symptoms of the disease, these must be controlled early on, allowing the person to quickly rebalance their immune system and regain their health”, he explains.

9. Most people with lupus lead normal lives.

“Today, we can say that most people with lupus lead a relatively normal life, although this normality is fluctuating and depends on regular follow-up with the rheumatologist”, comments specialist Klumb.

10. Lupus is not a contagious or hereditary disease.

Although many people have doubts about this, it is a myth to say that lupus is a contagious disease. It is an inflammatory, autoimmune and chronic disease.

As far as heredity is concerned, this is another myth. Experts believe in genetic predisposition, but not heredity – that is, just because a person’s mother has the disease, for example, doesn’t mean she will too.

Another myth is that the lupus patient will never be able to have children. Although pregnancy is not indicated while the disease is active, the woman can, yes, become pregnant, as long as it is planned and authorized by the doctor.

Finally, it is worth noting that there is a consensus among specialists from the Brazilian Society of Rheumatology (SBR) that new knowledge is increasingly emerging about the mechanisms involved in the development of Systemic Lupus Erythematosus (SLE). With this, new drugs also appear, with more efficacy and fewer adverse effects.

The information contained on this page is for informational purposes only. They do not replace the advice and follow-up of doctors, nutritionists, psychologists, physical education professionals and other specialists.