Lupus is really not a terminal disease!!!

When it comes to systemic lupus erythematosus, many people feel scared. There are also sayings circulating on social media that "systemic lupus erythematosus is the immortal cancer", describing it as an inescapable nightmare. Such cognition makes people afraid of this disease, believing that once they are diagnosed with it, they are destined to endure endless pain and suffering.

In fact, this statement is already outdated. With the advancement of medicine, the once demon "systemic lupus erythematosus" has been well controlled at present. As long as the patient follows the doctor's advice, the quality of life has been greatly improved.

So, what kind of disease is "systemic lupus erythematosus"? Let's talk about it in detail today.

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Systemic lupus erythematosus is more common in women

9 times more than male patients

Systemic lupus erythematosus (SLE) is a multisystem, autoimmune disease characterized by the immune system mistakenly attacking its own tissues and organs. The immune system, which is supposed to protect us, instead treats healthy cells as enemies, causing systemic inflammation and damage.

We do not know enough about the exact cause of SLE, but we know that genetics, environmental factors and hormone levels play an important role in the occurrence of the disease. The disease is more common in women of childbearing age (15 to 44 years old), and the proportion of female patients is 9 times that of male patients.

The complexity of this disease lies in the fact that it can affect multiple systems of the body, such as the skin, joints, kidneys, heart, blood, nervous system, etc. Therefore, the symptoms are diverse and the condition of different patients varies greatly.

Early symptoms are often fatigue, rash, mouth ulcers and hair loss. Joint pain and muscle pain are also common. Children may also experience a decrease in appetite. These symptoms are very non-specific and therefore easily overlooked.

Some people may only have skin affected throughout their lives. The typical symptom is "butterfly-shaped" erythema on the face, but atypical skin damage may appear as rash, disc-shaped or plaque-shaped erythema, etc.

Some patients may also show multi-system and multi-organ damage, among which kidney damage (i.e. lupus nephritis) is one of the serious complications, which can lead to renal failure and require regular renal dialysis treatment.

Patients with systemic lupus erythematosus develop erythema and mild edema. Source: UTD

The course of SLE is usually fluctuating, and patients may have relapses and remissions at different stages. In other words: sometimes there may be no symptoms at all, like a healthy person; sometimes there may be an excruciating flare-up. Some patients will remain in a relatively stable state for a long time, while others may experience a serious decline in quality of life due to frequent flare-ups.

This unpredictability makes it difficult for both doctors and patients to manage the disease, so it requires close cooperation and unity between doctors and patients to fight the disease.

Lupus is not a terminal disease

The key is early detection and timely treatment

Close cooperation with doctors

In the past, people often regarded lupus as an incurable disease, but with the advancement of medicine and the optimization of treatment options, this disease has gradually become a controllable chronic disease. Early intervention treatment and personalized management are the key to improving prognosis.

SLE should be treated immediately after diagnosis, especially when the patient has obvious organ involvement, such as nephritis or nervous system damage.

If the disease is diagnosed in its early stages, it can be allowed to stabilize, with small drug doses and types used, and minimal disruption to life. If the diagnosis is delayed or the disease is not controlled for a long time, in order to avoid irreversible organ damage, a more potent drug combination will need to be used, such as hormone shock therapy and the combined use of biologics, which will cause relatively greater disruption to life, but can still achieve good therapeutic effects.

There are currently four types of commonly used drugs. Follow-up should be maintained during medication so that the doctor can adjust the medication in time according to the condition, reduce attacks and side effects, and even after the condition has improved, patients still need regular follow-up visits and monitoring to prevent recurrence.

Hydroxychloroquine: The most core basic drug. Any SLE patient is recommended to use hydroxychloroquine as long as there are no serious side effects. It can not only control mild symptoms, but also reduce the risk of recurrence, and there are not many side effects; even if there are, they are relatively mild.

Glucocorticoids: Approximately 92.3% of patients will use them to quickly control acute attacks, and then the dosage will be gradually reduced. If long-term use is required, maintenance treatment must be carried out at the lowest dose that can control symptoms. It can significantly reduce side effects such as weight gain and osteoporosis. It can be said that the earlier the intervention, the sooner the maintenance dose can be entered or use can be stopped, and the easier it will be to restore weight.

Immunosuppressants: About 99.1% of patients use them, such as mycophenolate mofetil and cyclophosphamide. They are suitable for patients with moderate to severe organ involvement and can effectively reduce the risk of disease progression.

Biological agents: New drugs such as Belimumab are mainly used for refractory or recurrent cases, and can further improve the disease control rate and enhance the quality of life.

These drugs have significantly improved the survival rate of SLE patients:

The five-year survival rate of 99 patients who were treated at Johns Hopkins University in the United States between 1949 and 1953 was 50%. In contrast, the five-year survival rate of newly diagnosed SLE patients internationally is over 90%, and the 15- to 20-year survival rate is about 80%.

A study based on a survey and follow-up of 1,002 systemic lupus erythematosus (SLE) patients obtained the overall survival rate and drew a survival curve. The results showed that the 5-year, 10-year, 15-year, and 20-year survival rates of systemic lupus erythematosus patients in Yunnan Province were 95%, 91%, 88%, and 84%, respectively.

But except for hydroxychloroquine, most other drugs have immunosuppressive effects. This may make it easier to get infected with viruses and bacteria. Hormones can also cause side effects such as edema, hypertension, hyperlipidemia, osteoporosis, etc. Many patients do not die from SLE itself, but from complications of treatment.

This is also the reason why many patients are afraid. However, everyone should be very clear that the harm caused by the disease is greater than the side effects of the drug. The purpose of enduring these side effects is to control the disease, and when the disease is well controlled, the hormone can be reduced or even stopped.

Today, SLE treatment has entered the era of less hormones. Doctors will try to reduce the dose of hormones and shorten the course of hormone treatment. While ensuring the efficacy, they will also minimize the side effects of hormones.

In summary, although SLE is complex, it is by no means incurable. With the advancement of medical technology in the future, the 20-year survival rate of SLE patients will exceed 90%, and even 95% is not impossible.

For example, many new SLE treatment drugs have been preliminarily verified recently: voclosporin, Anifrolumab, Teclistamab, Daratumumab, avacopan, and the popular CAR-T treatment for lupus in China... These newer drugs allow those difficult-to-treat patients to get better control of their condition.

With the continuous advancement of treatment methods, the condition of many patients has been well controlled and they can live like ordinary people. The key lies in early detection, timely treatment, and close cooperation with doctors.

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How to identify SLE and the risk of misdiagnosis?

The complexity of SLE means that it is difficult to make an accurate judgment without rich diagnosis and treatment experience. However, through statistical analysis, we have summarized some rules. If similar phenomena are found in daily life, you need to go to the rheumatology and immunology department as soon as possible.

If one or more of the following symptoms occur, especially in women of childbearing age, you must be highly vigilant:

If you have unexplained fatigue and fever that recurs or lasts for weeks or even months, you should consider immune-related problems and see a doctor as soon as possible.

Recurrent skin rashes: more than half of patients will experience them, and they are more common in young people. Facial "butterfly spots" are a typical manifestation, but photosensitive rashes/erythema may also occur on other exposed parts of the body.

Unexplained hair loss: This is also one of the manifestations of SLE skin damage;

Joint pain with morning stiffness: Although the symptoms are similar to those of rheumatoid arthritis, lupus arthritis often does not cause permanent joint damage, so timely treatment can restore joint function as soon as possible;

Unexplained oral ulcers: This is also a symptom that occurs in more than half of SLE patients, especially when oral ulcers occur repeatedly and damage multiple sites, such as lips, cheeks, hard palate, gums, tongue, and nasal cavity;

Abnormal renal function: Physical examination reveals signs such as urine protein and hematuria, especially in young women. Regardless of whether there are other symptoms, if this sign is found alone, you should see a doctor as soon as possible (you can go to the nephrology department first).

As well as other neurological diseases, hematological diseases, abnormal immune indicators, etc.

The diagnosis of SLE usually requires an experienced rheumatologist who combines clinical manifestations and laboratory tests to exclude other diseases while looking for confirmatory evidence for SLE. Antinuclear antibodies (ANA), double-stranded DNA antibodies (anti-dsDNA) and anti-Sm antibodies are all commonly used examination items.

When these antibodies are positive, especially the latter two, it means that the possibility of SLE is very high. However, don't panic immediately. The positive results of these two tests are not 100% equivalent to SLE. This requires further professional judgment by the doctor.

Nowadays, many SLE patients, apart from taking medication, work, live, get married, have children, and lead happy lives just like ordinary people; some patients have even completely stopped taking medication.

Therefore, everyone should believe in science and cherish life. As long as we are alive, there is hope and unlimited possibilities.

References

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[3]TianX,LiM,WangQ,etal.TheChallengesandFuturePerspectivefortheManagementofSystemicLupusErythematosusinChina:AConciseAnnualReportof2020.RheumatolImmunolRes.2022;3(1):38-44.

[4]ShiY,BiD,WangY,etal.ChineseSLETreatmentandResearchGroupRegistry(CSTAR)XIV:thesubjectivewell-beingofpatientswithsystemiclupuserythematosus.FrontMed(Lausanne).2022;9:984183.

[5]LiM,WangY,ZhaoJ,etal.ChineseSLETreatmentandResearchGroup(CSTAR)Registry2009-2019:MajorClinicalCharacteristicsofChinesePatientswithSystemicLupusErythematosus.RheumatolImmunolRes.2021;2(1):43-47.

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Planning and production

Author: Nie Shunli, attending physician of the Department of Rheumatology and Immunology; Jiang Yongyuan, Master of Internal Medicine, Third Military Medical University

Reviewer: Tang Qin, Director of the Science Popularization Department of the Chinese Medical Association, National Health Science Popularization Expert