1. What is the incidence of SLE?
The incidence of SLE is mostly in young adults, and there are far more women than men, with the ratio of men to women being 1:7-10. Women of childbearing age account for most of the patients. 47% of the total number of patients are aged 20-40. The incidence rate of children and the elderly is much lower than that of young adults. Relatively speaking, the onset of the disease is generally milder in the elderly, while the onset of the disease is more acute and severe in children, with a poorer prognosis.
The incidence of lupus erythematosus is related to race, with a higher incidence in people of color than in Caucasians, and the prevalence in China is much higher than in Western countries. People of Chinese descent involved in foreign affairs also have a high prevalence rate. The prevalence of lupus erythematosus in black Americans is four times higher than that of whites. Lupus erythematosus is widely distributed all over the world, with large regional differences. Statistics show that the incidence is about 50/100,000 in the United States, 4~18/100,000 in the United Kingdom, 50/100,000 in the indigenous population of Australia, 3.2/100,000 in India, and 70/100,000 in China.
The mortality rate of lupus erythematosus was once thought to be related to race, but research studies in various countries and regions have found that the mortality rate and survival rate are closely related to the level of local economic development and medical level, and at present, many units in China report that the 5-year and 10-year survival rates have reached 90-95%, which is at the advanced level in the world.
2. Is SLE hereditary?
Family survey shows that about 10%-20% of the first and second degree relatives of SLE patients can have similar diseases; among monozygotic twins, if one of them develops the disease, the possibility of the other one developing the disease is 25%-50%; for heterozygotic twins, if one person develops the disease, the chance of the other one developing the disease is 5%. Therefore, lupus has a certain tendency to be hereditary, but there are also many children of lupus patients who do not have the disease, which means that heredity is only one of the factors leading to lupus, and as an internal factor, other external factors such as environment, infection, endocrine, autoimmunity, etc. are also involved before the disease develops.
3. Is lupus erythematosus contagious?
Lupus erythematosus is an idiosyncratic autoimmune disease involving multiple factors (genetics, sex hormones, environment, infection, drugs, immune response). Most medical practitioners generally believe that the pathogenesis of lupus erythematosus is the malfunction of the number and function of immunologically active cells, which leads to immune dysfunction. The body produces a large number of autoantibodies that cause immune complex (type III) and cytotoxic (type II) hypersensitivity reactions, resulting in extensive tissue damage and multisystem clinical symptoms. Once the pathogenesis of lupus erythematosus is clarified, we know: this disease is not contagious.
4. What are the environmental factors that cause lupus erythematosus?
The environment is an important factor contributing to changes in the immune function of the body, and many factors are associated with the development of lupus erythematosus: for example, ultraviolet radiation, hair dyes containing aromatic amines. In addition, cold and strong electric light exposure can also trigger or aggravate the disease, and some limited discoid lupus erythematosus can evolve into systemic after exposure to sunlight, with the chronic type evolving into the acute type. Therefore, lupus erythematosus patients should try to avoid direct exposure to ultraviolet light to avoid aggravation of the disease.
5. What are the main symptoms of SLE?
The first symptom of SLE is a bright red rash on the face, limited to both cheeks and the bridge of the nose, with clear edges, and the rash looks like a butterfly, commonly known as butterfly erythema. The rash is also photosensitive, and the color of the rash deepens and the edema increases after exposure to outdoor sunlight. When the edges of the erythema are touched by hand, there is a soft and hard feeling, and the patient often does not feel itchy. This rash pattern is similar to other allergic dermatoses of the face at a cursory glance, such as cosmetic dermatitis caused by cosmetic allergy. However, although the rash of cosmetic dermatitis also has photosensitivity manifestations, the erythema often does not involve the nasal bridge, there is no tenderness and hardness when the edges of the erythema are touched, and patients with cosmetic dermatitis have significant itching.
In addition, patients with early lupus erythematosus often have frostbite like dermatological manifestations on the backs of both hands. There are edematous erythema of different sizes and irregular shapes on the backs of both hands, symmetrically distributed, usually without ulceration, without itching and with burning pain, called erythema multiforme. This rash is not affected by seasons and exists all year round, while frostbite occurs in winter, often with ulceration and significant itching.
More importantly, early lupus erythematosus is often accompanied by many unnoticeable systemic symptoms. For example, peripheral joint pains of all sizes, low fever, weakness and anemia. This is because there is a disease factor —- Lupus Erythematosus Factor in the blood of early lupus patients, which can destroy blood cells, joint cavities, liver, kidneys, heart and brain tissues of the body. When blood tests are done at this time, the following laboratory changes are observed: a significant decrease in red blood cells, hemoglobin, white blood cells, platelets, and an increase in blood sedimentation, and when immunological tests are done, the following laboratory indicators appear: positive anti-nuclear cell antibodies, positive rheumatoid factor, and lupus cells can be found in the blood.
Young, middle-aged and elderly women with early lupus rash and systemic symptoms as described above should be seen by a hospital for laboratory tests.
Who should be considered for SLE?
Since SLE is mostly seen in women in their reproductive years, women between the ages of 15 and 40 should be examined for SLE if they have some of the following abnormalities for which no clear cause can be found (1) Swollen and painful joints for more than 3 months, unexplained muscle pain, muscle weakness; (2) Long-term unexplained fever; (3) Unexplained recurrent oral and nasal mucosal ulcers; (4) Pale, numb or uncomfortable fingers when exposed to cold or emotional agitation; (5) Erythema on the cheeks lasting for more than a month, mainly on the cheeks and the bridge of the nose, and aggravated by sun exposure; (6) Recent massive hair loss; (7) Unexplained epilepsy, spastic seizures; (8) unexplained heart, lung, pleural or renal lesions; (9) presence of thrombocytopenia, leukopenia or anemia; (10) abnormal urinalysis: protein, red blood cells or tubular type in urine; (11) abnormal liver function without causation, or persistent hyperglobulinemia, decreased plasma protein; (12) unexplained increased blood sedimentation.
7. Can SLE be cured?
Any disease can be cured only if the exact cause is found and the treatment is directed at the cause. Lupus erythematosus is precisely a disease with extremely complicated causes, and the exact cause has not been identified so far, so it is difficult to be cured by either Chinese medicine or Western medicine. Therefore, patients should be prepared to fight with the disease for a long time and should not take any chances. Although the disease cannot be cured, there are sufficient drugs and medical treatments available nowadays to bring the disease into long-term remission, and patients can live a normal life after remission.
8. What to pay attention to in the daily life of SLE patients
Since the onset or aggravation of SLE is often related to the following factors: infection, sunlight exposure, surgery, pregnancy, emotional stimulation, certain drugs, etc., SLE patients should pay attention to: ① Regular life, appropriate exercise, enhance physical fitness, avoid excessive work stress, maintain adequate sleep, avoid emotional ups and downs, strengthen their understanding of the disease, and build confidence in life. ② Due to the long-term use of hormones and immunosuppressants, immune function is low, easy to combine infection, should try to avoid going to the crowded public places; when various infections (such as respiratory, intestinal, urinary tract infections) appear, should be treated in a timely manner. Sunlight exposure can aggravate skin and internal organ damage, so avoid strong sunlight exposure, especially when going out in summer, you should wear a hat, umbrella and sunscreen. Certain foods and drugs can strengthen the photoallergic effect and should be avoided: such as sulfonamides, tetracyclines and celery, figs, mushrooms, etc. ④ Surgery and pregnancy are the two major hurdles for SLE patients, and poor management may aggravate the disease. Before surgery, the doctor should be informed of SLE disease and medication; if you are considering pregnancy, you should contact the rheumatologist to choose the best time to avoid relapse of the disease and ensure the health of the fetus. ⑤ Since SLE most often involves the kidney, drugs with kidney damage should be used sparingly. 6. Long-term use of hormones is likely to cause osteoporosis, so attention should be paid to calcium supplementation and active vitamin D. 7. Do not increase, decrease or stop hormones without authorization, but contact your doctor regularly to review the relevant indexes (once every 1-3 months during the active period and once every six months to a year during the stable period) and adhere to the treatment under the guidance of your doctor.
9. What issues should patients pay special attention to when choosing their occupation?
Since the occurrence of autoimmune diseases such as lupus erythematosus is closely related to physical and chemical factors in the environment, patients should pay special attention in choosing their occupations. Painters, chemical factories, construction materials (chemicals), opening beauty salons, shoe manufacturing, etc. are not suitable for SLE patients to work.
10. What do SLE patients need to pay attention to in their diet?
Lupus erythematosus does not require strict avoidance of food. If you are not allergic to seafood, you can eat seafood; if you are not allergic to beef, you can eat beef. Secondly, do not “fire”, if you eat chili, fried peanuts, fried doughnuts after not appearing sore throat, you can eat, but if you eat a sore throat, then do not eat.
For simple urine protein without renal impairment, adequate protein should be supplemented in a timely manner, but protein intake also has certain requirements, overemphasis on a high-protein diet can cause glomerular hyperfiltration, and over time, promote glomerulosclerosis. Quality animal protein includes: eggs, milk, lean meat, etc., and vegetable protein should be appropriately limited. For people with impaired kidney function, protein intake should be limited so as to reduce nitrogen retention in the blood, reduce the burden on the kidneys and delay the process of kidney failure. Soy products should be consumed sparingly or forbidden.
11. What are the commonly used drugs for SLE treatment?
(1) Non-steroidal anti-inflammatory drugs In the treatment of SLE, they are mostly used in patients with mild symptoms such as fever, joint pain, myalgia and weakness without obvious visceral or hematological system affected. Proper use of such drugs can relieve symptoms and reduce the dosage of adrenocorticosteroids and their side effects. Ibuprofen, Imodium, Mobic, diclofenac sodium (including Fotarine, Daphne, Intacrine, Oxycodone, Diclofenac pain, etc.) and Tamsulosin can be applied optionally. However, this class of drugs has adverse effects such as gastrointestinal reactions, kidney damage and elevated liver enzymes, and the course of treatment should not be too long. They should be used with caution in patients with SLE nephropathy to avoid aggravating kidney damage.
(2) Glucocorticoid diuretics It is the main drug for the treatment of SLE, with strong anti-inflammatory, anti-proliferative and immunosuppressive effects. It is indicated for acute onset multisystemic impaired lupus, non-infectious lupus with hyperthermia that cannot be controlled by other methods, marked hemocytopenia, nephritis, central nervous system lesions, interstitial pneumonia and severe hepatitis. The dosage, route of administration and duration of glucocorticoids depend on the severity of the patient’s disease, systemic condition, combined medications and response to treatment. The main complication of this therapy is infection, so it is not recommended for those with infection and very poor nutrition. In addition, too rapid a drip can lead to reactive arthropathy and even death due to cardiac rhythm disturbance.
(3) Immunosuppressants Immunosuppressants used for the treatment of SLE include: cyclophosphamide, azathioprine, nitrogen mustard phenylbutyrate (also known as CBl348), methotrexate, vincristine and cyclosporine (cyclosporine human). They are commonly used in severe and refractory SLE, such as lupus nephritis and central lupus. Lupus arthritis hardly needs this type of drug treatment, except for the rare cases with destructive arthritis, then methotrexate is available.
(4) Botanicals Such as tretinoin and pavoline.
In addition, there are still some immunology-related treatments, such as plasma replacement and immunosorbent therapy, high-dose immunoglobulin intravenous shock therapy, and leukocyte replacement therapy, which are still in the research stage.
12. Can a patient with lupus erythematosus marry?
Since most lupus erythematosus occurs in women of childbearing age, whether lupus erythematosus patients can get married and their married life after marriage are issues of concern and often asked by patients.
Not only can lupus patients get married, but they should also lead a married life like normal people. In terms of sexual life, lupus patients need to pay attention to the following: ① Pay attention to hygiene in sexual life, the body resistance of lupus is poor, plus the drug treatment may weaken the body resistance, so it is more likely to have gynecological infection than general people; ② Avoid unplanned pregnancy, but do not take oral contraceptives, because it is dangerous to have pregnancy and childbirth when lupus is not in remission, and it is also dangerous to abort and induce labor, while oral The contraceptive pill is a negative influence on lupus erythematosus. 13.
Can a patient with lupus erythematosus have children?
In the past, pregnancy and childbirth used to be contraindicated in lupus because many patients experienced deterioration of the disease in the middle and late stages of pregnancy, or in the months after delivery, which was life-threatening in severe cases. Nowadays, most patients with lupus erythematosus can achieve remission after proper treatment, and most of them can safely survive pregnancy and childbirth. Therefore, most patients with lupus can safely become mothers.
Pregnancy and childbirth in lupus erythematosus need to be carried out under the guidance of doctors. The first thing is to master the timing of pregnancy. If the daily hormone does not exceed 10mg of prednisone and the immunosuppressant is stopped for 6 months, and the disease is still stable on review, pregnancy can be considered. During pregnancy, if there is no discomfort, blood test will be done once every three months to check the indicators related to lupus erythematosus. A routine urine test is done once a month, and if the urine is positive for protein, a blood test is done at any time. Obstetrical conditions need to be monitored by the obstetrician.
Despite having had a pregnancy and childbirth as planned under the doctor’s guidance, a small percentage of patients still have pregnancy accidents during the course of pregnancy. If the condition worsens, medication must be administered under medical supervision.
14. Do patients with lupus erythematosus have to take hormones?
For patients with simple discoid lupus erythematosus, there is no damage to internal organs or joints, which means that lupus cells are not active, then it is not necessary to take hormones, and topical hormonal creams can be applied. For patients with SLE, hormones are not mandatory for those who only have mild joint pain without internal organ damage. However, the number of patients in the above two categories is very small, and for most patients, hormones are a must. In most cases, as soon as the diagnosis of lupus erythematosus is confirmed, doctors will put patients on hormones. Because the use of hormones is not particularly standardized nowadays, doctors will give them to patients for insurance purposes even when they are available or not.
15. How are hormones used in the treatment of lupus erythematosus?
Hormone is a double-edged sword, which can cure the disease if used properly, but can cause the disease if used improperly. The efficacy of hormones in lupus is certain, but the key is to assess whether the benefits or risks of using hormones are greater for the patient before administering the medication. If the benefit is great, it should be used without losing time.
Before treatment, it is important to find out whether the case is mild or severe. A mild case is one with only fever, skin diagnosis, arthritis, Raynaud’s phenomenon, a small amount of plasma cavity effusion, and no obvious systemic damage, while a heavy case is one with simultaneous involvement of one or several organs, such as lupus nephritis, lupus encephalopathy, acute vasculitis, interstitial pneumonia, hemolytic anemia, thrombocytopenic purpura, and a large amount of plasma cavity effusion.
16. Can lupus erythematosus patients use cosmetics?
Many young women with lupus erythematosus love beauty in particular. However, after suffering from lupus erythematosus, rashes on the face and other parts of the body often appear to seriously affect the beauty and cause serious psychological burden to patients. Some patients are so eager that they try to cover up the rash with foundation and rouge, not knowing that this will aggravate the disease! Many cosmetics contain aromatic amines and chemical agents, which can trigger lupus! There are also cases of lupus triggered by hair dyeing, eyebrow tattooing and breast augmentation in the society. For patients with erythema on the face, it is best not to apply any cosmetics, as the erythema will disappear naturally when the disease is under control and in remission, and no scarring will be left. During the treatment period, even if there are no more erythema on the face, do not use cosmetics casually because many patients become allergic after they have lupus erythematosus, and the cosmetics they used to apply will be allergic now. At this time, it is better to use some natural skin care products, such as olive oil, almond oil, coconut oil, etc., which are very effective for skin care.
17. Is it better for SLE patients to be hospitalized or to choose outpatient treatment?
The advantages of hospitalization are: it is good for the rescue of critical patients and can do some more complicated tests and diagnoses under hospital conditions. If the patient is not critically ill, the necessary tests and diagnosis are already clear and only general treatment is required, hospitalization is meaningless.
18. Some people call lupus erythematosus a modern disease. Is this disease a modern disease?
Lupus erythematosus is a Western medical concept. Certain conditions similar to lupus erythematosus were recorded in ancient medical texts, but there is no such concept as lupus erythematosus. The first expert in the treatment of lupus erythematosus in Chinese medicine should be Professor Wang Weichuan of Sichuan College of Traditional Chinese Medicine. He pioneered the treatment of lupus erythematosus with Chinese medicine in the 1960s and was very successful. According to the patients treated by the old man, although Professor Wang is very proficient in pulse diagnosis, the treatment of lupus erythematosus still mainly relies on the changes of various laboratory tests to guide the treatment. Because only in this way can he judge the disease correctly and guide the use of medicine.
19. Some people think that prescriptions can cure big diseases, what do you think?
It should be said that there have been lupus patients since there have been human beings. Humans have paid a great price in the way of understanding lupus erythematosus. Before the 1940s, 80% of people with lupus died within two years. It was not until the use of glucocorticoids in the treatment of lupus that the 2-year mortality rate was rapidly reduced to less than 5% within 2 years. In the decades that followed, the treatment of lupus has made further strides. It is never possible to treat such a serious disease with a prescription alone.
Some TCM practitioners believe that prescriptions cure serious diseases, or they think that fighting poison with poison, and use this concept to guide themselves in their search for TCM treatment. This method is incorrect. Because Chinese medicine does not know this disease, ancient books on this disease also talk about few records. Therefore, modern Chinese doctors treat this disease through their own knowledge of Chinese medicine and Western medicine diagnosis, laboratory indicators and communication with patients to find out the experience. If someone claims that his or her treatment is ancestral (referring to lupus erythematosus), it must be a lie. This is because the treatment for this disease was available only in the 1960s and 1970s.
20. Should a patient with lupus tell people around him/her about his/her condition?
This depends on the individual case. However, given that most people currently have misconceptions about lupus, some even believe that lupus is an infectious disease and cancer equivalent. It can cause irritation in one’s surroundings, which in turn can affect the life of the patient. It is better to keep this “little secret” to yourself.