Beautiful light dance, do you still remember? Once SLE is mentioned, many people have developed a sense of fear and even compare it with cancer. Why does it make people talk about it? Let’s first understand what is SLE.
1.What is SLE?
Systemic lupus erythematosus (SLE) is an autoimmune disease that involves multiple systems and organs, with complex clinical manifestations and a recurrent course. The typical manifestation is edematous erythema on both cheeks, and the erythema on the bridge of the nose is often connected with the erythema on both cheeks to form a butterfly-like rash, accompanied by kidney and other organ damage.
According to estimation, there are about one million SLE patients in China, and the trend is increasing year by year. The disease occurs in women of childbearing age, mostly women aged 15 to 45. It is significantly more common in women than in men, with a ratio of 9:1 or even higher in women to men during the reproductive age. Although less frequently found in men, the disease is no less severe than in women.
2. Why is it called lupus erythematosus?
As we all know, when wolves fight with wolves, they often tear each other’s faces with their sharp teeth and form large red scarring after biting each other’s faces bloody. Medical doctors found that the facial rash of patients suffering from lupus erythematosus was similar to the facial scar of wolf bites during fights, so they imaginatively called the disease lupus erythematosus, and this term has been used until now. In addition, lupus erythematosus has an insidious or sudden onset, and its attacks are more dangerous and easily recur, and it is unpredictable and unpredictable, just like a wolf.
When people see the word “wolf”, they have a sense of fear and think that the disease is related to wolves, but in fact it is not related at all. Just like the swollen legs of filariasis patients, which are called “elephant skin legs”, some people have dysplasia of the thorax, forming “chicken chest”, which is actually not related to elephants and chickens at all.
3.What are the causes of SLE?
The exact cause is unknown, and is the result of a combination of factors. At present, it is believed that the disease is based on genetics, certain specific factors to stimulate the disease. Genetic factors make the occurrence of the disease possible. The so-called environmental triggers include ultraviolet light, certain antibiotics, infections, hormones, etc. The relationship between lupus and mental stress needs to be further studied, but some data confirm a correlation between the two.
4. What are the general manifestations of SLE at the beginning?
The initial manifestation of SLE is varied and varies greatly from patient to patient. Some patients have more prominent skin symptoms but less internal organ involvement; some have multiple positive serological indicators but less clinical symptoms; some patients have multiple internal organs involved at the beginning, and the disease is more dangerous. Because of its complex and variable nature, the initial onset is often misdiagnosed as nephritis, pericarditis, psychosis, primary thrombocytopenic purpura or arthritis, etc. Therefore, it is important to recognize the initial manifestations of lupus erythematosus.
Common manifestations include unexplained fever in a woman of childbearing age, ineffective treatment with antibiotics, hair loss (up to 100 or more at a time), joint pain, joint swelling, facial erythema, photosensitivity, recurrent oral ulcers, etc.; there are also initial manifestations of facial and bilateral lower limb swelling, foamy urine (proteinuria), or abdominal pain, diarrhea, vomiting, blood in stool, etc.; individual patients even have initial manifestations of mental Some patients even have psychiatric symptoms, such as dizziness, epilepsy, disorders of consciousness, confusion, etc.; some manifest as menstrual disorders, habitual abortion, and misdiagnosis as gestational hypertensive syndrome when proteinuria is detected in pregnancy.
SLE can occur in men and women of all ages. Patients with these manifestations should be alert and go to the rheumatology department of a large hospital as soon as possible.
5.What are the characteristics of erythema of SLE?
80% of patients have skin damage, often on exposed areas of the skin, with a symmetrical rash. The erythema does not involve the nasolabial folds, which is one of the important differences of erythema from other diseases. In remission, the erythema may fade, leaving brownish-black pigmentation and less often atrophy. In advanced erythema, skin atrophy can appear, and some of them can scarify or show hypopigmentation. Discoid erythema, commonly found in photosensitive areas such as forehead, cheekbones, nose, ears and trunk, is an infiltrative erythema with clear borders.
Diagram: butterfly erythema Diagram: discoid erythema erythema
6.Does SLE cause joint deformation?
About 95% of patients will have joint pain, which may precede other systemic damage and sometimes even be misdiagnosed as rheumatoid arthritis. The most commonly affected joints are the proximal interphalangeal joints, wrist and knee joints, followed by the foot and ankle joints. It usually does not cause bone destruction or joint deformity. About 4-8% of patients have recurrent swelling of the joints, which can cause subluxation of the joints, resulting in deformity. In addition, myalgia and muscle weakness are also very common symptoms.
The deformity caused by subluxation of the metacarpophalangeal joint is clearly different from that caused by bone destruction in rheumatoid arthritis.
7.What is lupus nephritis?
When SLE invades the kidney, it is also called lupus nephritis (LN for short), which is sometimes the first symptom of SLE. It manifests as proteinuria, hematuria, tubular urine, and even renal failure. Lupus nephritis (LN) is a chronic process with occasional exacerbations and remissions. It is an important cause of prognosis. The pathological typing of kidney puncture is important to determine the prognosis of the disease and guide the treatment. Regular review of urine routine can detect kidney damage in time.
Among the cardiac lesions, pericarditis is the most common, with clinical manifestations of chest pain and tachycardia. Sometimes pericarditis is the first symptom of SLE. In addition, myocarditis, endocarditis, and hypertension can all be present.
Diagram: Warty endocarditis Diagram: X ray pericarditis, pericardial effusion
8.Does SLE cause dyspnea?
About half of SLE patients can cause respiratory system lesions, commonly pleurisy, interstitial lung lesions, pulmonary hypertension, etc.. The main manifestations are dry cough, chest tightness, chest pain, pleural effusion, dyspnea, etc.
Figure: Pleurisy, pleural effusion
9.Does SLE cause anemia?
About more than half of the patients can develop anemia. The cause of anemia is the result of a combination of causes. In addition, white blood cell drop and thrombocytopenia can occur, and severe white blood cell drop and platelet abnormalities need to be taken seriously by patients, who must go to the hospital regularly for routine blood tests.
10.What tests are needed for SLE?
Anti-nuclear antibody (ANA) has high sensitivity but low specificity for the diagnosis of SLE, and is a screening test for SLE.
Anti-double-stranded DNA (anti-ds-DNA) antibodies are associated with disease activity and prognosis, and their specificity is as high as 95%.
The anti-Sm antibody has a specificity of 99% and is important for the diagnosis of the disease and is a marker antibody for SLE.
In addition, blood routine, urine routine, ESR, C-reactive protein (CRP), liver function, kidney function, etc., which are not specific but can reflect the whole body, are commonly done at follow-up examinations.
11.How to diagnose whether I have SLE?
At present, the classification criteria revised by the American College of Rheumatology in 1982 are usually used.
1. Butterfly-shaped erythema of the face
2. Disc-shaped erythema
3. Sun allergy
4. Oral or nasopharyngeal ulcers
5. Non-erosive arthritis
6. Plasma membrane inflammation
7. Kidney damage
8. Neuropathy: seizures or psychosis
9. Blood abnormalities: hemolytic anemia, leukopenia, lymphocytopenia or thrombocytopenia
10. Immunological abnormalities: positive lupus cells, positive anti-ds-DNA antibodies, positive anti-SM antibodies, or false positive anti-syphilis serologic test lasting for 6 months
11. Positive antinuclear antibodies.
Clinically, SLE can be diagnosed if four or more of the above 11 criteria are present, provided that other conditions are excluded.
In addition to the 1982 classification criteria, the American College of Rheumatology (ACR) revised the classification of SLE in 2009 with the following criteria.
Clinical criteria
1. Acute or subacute cutaneous lupus
2. Chronic cutaneous lupus
3. Oral/nasal ulcers
4. Hair loss without scarring
5. Inflammatory synovitis, swelling of two or more joints or joint tenderness with morning stiffness observed by an internist
6. plagiocele
7. Renal: at least 500 mg protein/24 hours by urine protein/creatinine ratio (or 24-hour urine protein), or with erythrocyte tubularity
8. Neurological: purpura seizures, psychosis, polyneuritis mononeuritis, myelitis, peripheral or cranial neuropathy, encephalitis 9. Hemolytic anemia
10. Leukopenia (< 4000/mm3 at least once) or lymphopenia (< 1000/mm3 at least once)
11. At least one thrombocytopenia (<100,000/mm3)
Immunological criteria
1. ANA above the laboratory reference range
2. anti-ds-DNA higher than the laboratory reference range (ELISA method in addition, using this method, need to be higher than the laboratory reference range twice)
3. anti-sm positive
4.Anti-phospholipid antibody
①Lupus anticoagulant positive
②Syphilis serological test false positive
③Anti-cardiolipin antibody – at least twice normal or medium to high titer
④positive anti-β2 glycoprotein 1
5. Low complement
①Low C3
②Low C4
③Low CH50
6. In the absence of hemolytic anemia, a positive direct coombs test
Patients are classified as SLE if they meet at least one of the following conditions: 1. There is biopsy-proven lupus nephritis with positive ANA or positive anti-ds-DNA; 2. Patients meet four of the classification criteria, including at least one clinical criterion and one immunological criterion .
Since the diagnosis of SLE is more complicated, it must be confirmed by rheumatologists in regular hospitals and cannot be diagnosed by oneself to avoid misdiagnosis.
12.How do patients choose the treatment?
You must go to a regular hospital, through regular examination and test, to confirm whether you have SLE, and under the guidance and monitoring of rheumatologists for treatment and medication. Do not listen to advertisements and take medication on your own, or increase or decrease the dose or stop taking medication based on your self-perception.
13.Treatment principles of SLE
Early detection, early treatment, initial treatment, so that it will not recur; doctors will comprehensively assess the condition and determine the individualized plan;
Regular checkups, maintenance treatment;
Restore social activities and improve the quality of life.
14.What is the drug treatment for SLE patients?
(A) Glucocorticoids
Glucocorticosteroids are the first choice for the treatment of this disease, and its use has profound knowledge. The size of the dose, how to increase or decrease, must be based on the disease and vary from person to person. Close attention should also be paid to any adverse reactions such as infection, hypertension, diabetes, peptic ulcer, osteoporosis and aseptic osteonecrosis.
Therefore, patients must strictly follow the instructions of their rheumatologists and should not increase or decrease the dose or stop the medication without authorization.
Do not refuse to use hormones because they may cause more side effects. If you use hormones reasonably and correctly, not only will there be no side effects, but you can also control the disease quickly and bring about long-term remission.
(II) Non-steroidal anti-inflammatory drugs
It can be used to treat pain caused by arthritis. Note: Use with caution in cases of gastric ulcer, hematological system and kidney involvement.
(iii) Slow-acting drugs
Due to the side effects of hormones, high doses and long periods of use are not possible. The addition of slow-acting drugs such as immunomodulators or immunosuppressants can enhance the efficacy and reduce the occurrence of adverse reactions.
Commonly used slow-acting drugs include Leflunomide (Toloxil), Paeoniflorin capsules (Paflin), cyclophosphamide, tretinoin, cyclosporine, mycophenolate, etc.
15.How does TCM recognize SLE?
SLE belongs to the categories of red butterfly sore, warm poisonous hair spot, yin and yang poison, paralysis, and five organ paralysis in TCM. The treatment of SLE in TCM advocates supporting the righteousness and eliminating the evil, regulating the yin and yang, strengthening the physical constitution, and correcting its biased and declining symptoms, with emphasis on supporting the righteousness and consolidating the root, according to the specific types of symptoms as follows.
Internal burning of fire toxin: rapid onset of the disease, strong heat persists but does not decline, restlessness, unconsciousness, or even delirium, thirst, cold lips, epistaxis, blood in stool, sore muscles and joints, butterfly-shaped red spots on the skin of the face, edema and red spots on the skin of the whole body, constipation, red or vivid tongue, yellow dry moss, or even no moss on the tongue, sunken string pulse, or large and strong pulse. Treatment is to clear heat and detoxify. The treatment is to clear the heat and detoxify the blood, using water hyacinth, raw earth, mulberry leaf, common dandruff, raw gardenia, forsythia, comfrey, scutellaria, artemisia, xuan shen, chrysanthemum and Zhi Mu. For delirium and restlessness, take Angong Niuhuang Pill with soup.
Yin deficiency and internal heat: erythema or rash appearing from time to time, fever in the afternoon, irritability of the five hearts, dry mouth and throat, lumbago, soreness of bones and muscles, palpitations and sleeplessness, night sweating, emaciated hair, red face, urine with little color, edema, red tongue with little fluid or red crack, little or no moss, sunken and weak pulse or fine pulse. The treatment is to nourish Yin and lower fire, and to clear the poisonous evil, using medicine such as dragon’s tooth, tortoise board, raw earth, dragon bone, Zhi Mu, Huang Bai, ginseng, Xuan Shen, Sha Shen, Mai Dong, Dendrobium, pollen, Ge Gen, Prince Ginseng, etc.
Spleen and kidney yang deficiency: tiredness, chilliness or fever before noon, shortness of breath when moving, sweating, swelling of the face and limbs, lack of warmth in the limbs, sluggishness, lumbago, arthralgia, edema, little urination, abdominal distension, pale red spots, loose stools, pale tongue, thin white fur, sunken moist pulse or sunken and weak pulse. The treatment is to warm the kidneys and strengthen the yang, benefit the qi and detoxify the toxin, using raw sun ginseng, deer antler, gunpowder, angelica, codonopsis, epimedium, epimedium, astragalus, chasteberry, schisandra, poria, eucommia charcoal, cumin, etc.
Yin and Yang deficiency: deficient and floating face, purple and dull red spots, chill and fever, mental weakness, fatigue, lack of warmth in the limbs, dry mouth and thirst for hot drinks, dry stools and loose stools, little urine and white color, fat tongue with teeth marks on the side, yellow and white coating and greasy, sunken and weak pulse or sunken and late. The treatment is to nourish yin and yang, and to detoxify the toxin, using deer antler, cistanches, cuscuta, raw yam, dendrobium, guixin, rehmannia, bacopa monniera, cow knee, dogwood, wolfberry, schisandra, ginseng, red stone resin, cypress seed, zedoary, poria, and farmer’s root.
Toxic brain marrow evidence: headache, neck straight, nausea and vomiting, forgetfulness, convulsions, or limb restraint, or even hemiplegia, numbness of the limbs, restlessness, red and red tongue, thin yellow coating, pulse string or false large. The treatment is to calm the mind, clear heat and detoxify the brain, using fresh raw earth, fresh sage, jiao mountain gardenia, Chuanbei, Huanglian, Renzhong Huang, Renzhong Bai, Jin Yinhua, Lian Lian, Mab, Xuan Shen, etc. First, use water hyacinth, antelope horn, raw gypsum decoction instead of water, and then enter the former medicine. For those who are critically ill, use rhinoceros perforated to treasure dan.
16.What should be noted in the diet of SLE patients?
There is no special contraindication to the diet of SLE patients. However, certain foods, such as celery, parsley, figs, mushrooms, smoked food, alfalfa seeds and bean pods, can induce lupus erythematosus and should be avoided as much as possible.
Seafood, commonly known as hairy food. Some patients with SLE may develop allergies after consuming seafood (most SLE patients are hypoallergenic), triggering or aggravating the disease.
Mutton, dog meat, venison, cinnamon and lychee are warm in nature and can aggravate the internal heat symptoms of SLE patients who show internal heat of yin deficiency after eating them.
Spicy foods, such as chili, raw onion and garlic, can aggravate the internal heat of patients and should not be consumed.
Pay attention to a low-salt diet, and eat more bananas, apples, oranges, tomatoes and other fruits and vegetables rich in potassium. If the patient has renal failure and high potassium blood, he/she should not eat the above-mentioned foods with high potassium content, and patients with diabetes should also limit staple foods and sweets.
Patients who take hormone therapy for a long time can cause disorders of calcium and phosphorus metabolism and loss of bone calcium, resulting in osteoporosis and, in serious cases, osteonecrosis, so in addition to taking calcium supplements routinely, they should also eat more calcium-containing foods.
Note that some health care products are not only not beneficial but also harmful to SLE patients. For example, ginseng, American ginseng, gynostemma and their compound preparations contain ginsenosides, which can improve both cellular immunity and humoral immunity of human body.
Take care to avoid estrogen-containing drugs and foods. Placenta, umbilical cord, royal jelly, toad oil, and certain female contraceptives all contain estrogen, which is one of the important factors in the development of SLE.
In conclusion, SLE patients should have a light, low salt, low fat and high quality protein diet.
In fact, the taboos of SLE are very complicated and vary from person to person. These taboos listed above are only relatively general, and individual problems should be treated individually because of the great differences between individuals. The principle of mastering is neither to choke nor to be reckless, and patients can master them appropriately according to their own personal experience.
17, SLE patients daily life precautions?
SLE patients should strengthen their own care and health care, which is also critical to the prognosis of the disease. Patients should be made to maintain an optimistic attitude and good mood, and family members and friends should help them build up confidence to overcome the disease. Those who have different manifestations of lupus erythematosus can be cared for according to the situation.
(1) Pay attention to the prevention of cold and actively prevent and control various infections.
(2) Pay attention to the combination of work and rest and appropriate exercise.
(3) Facial erythema: keep the face clean, wash the face with water frequently and wet compress the erythema with warm water of about 30℃. Avoid using alkaline soap, poor quality cosmetics, etc.
(4) Mouth and nasal mucous membrane ulcers: maintain oral hygiene, clean your mouth after meals, and brush your teeth with a soft toothbrush.
(5) Hair loss: Wash your hair with warm water and massage your scalp while washing.
(6) Long-term bed rest: Pay attention to prevent decubitus ulcers, turn more often, keep the area clean, pat the back to facilitate coughing up phlegm, and pay attention to changes in urine and stool.
(7) Pay attention to the side effects of the drug: such as blackened stools, skin acne, hip pain, blurred vision, etc. should be reported to the doctor in charge and measures should be taken in a timely manner.
(8) Patients with photosensitivity should wear a hat or an umbrella when going out if the weather is sunny, in order to avoid aggravation of the disease by direct exposure to ultraviolet rays.
(9) Avoid the stimulating effect of chemical substances, and it is best not to use cosmetics.
(10) Pay attention to quit smoking, quit drinking. Nicotine and other harmful ingredients in cigarettes can stimulate the blood vessel wall and aggravate the inflammation of blood vessels, should be quit. Alcohol is warm and strong, which can aggravate the internal heat symptoms of SLE patients and should not be consumed. Pay attention to recuperation and maintain a positive and optimistic attitude.
18.Why should I have regular follow-up?
Because SLE is a disease that needs long-term treatment. Therefore, please make sure to insist on follow-up examinations, one is to evaluate the efficacy and adjust the treatment plan. The second is to monitor the toxic side effects of drugs to achieve the least side effects and the best efficacy.
19.Why does SLE favor women?
SLE is mostly seen in women of childbearing age, and the incidence of this period is 9-13 times higher than that of men, while the incidence of pre-childbearing and post-menopausal women is almost equal to that of men. This gives medical scientists a clue that there may be a relationship with women’s endocrinology. It has been shown through numerous studies that estrogen plays an important role in the development of lupus erythematosus. Of course, lupus erythematosus is caused by a variety of factors, not only endogenous but also exogenous. In addition to estrogen, there are also environmental factors, infections, genetics and other causes.
20. Can SLE patients get married?
We often encounter some girls who lose confidence in life after suffering from SLE and do not want to get married, wanting to spend their whole life celibate. In fact, this idea is completely wrong.
As most of SLE manifests as skin lesions, it brings heavy psychological pressure to the girls who love beauty, and also puts forward higher requirements to the doctors to control the disease as soon as possible and return the original face of the girl to be pretty, beautiful and youthful. It should be said that, according to the current treatment, most patients can be well controlled, and after the disease is controlled, it is completely possible to get married, and the comfort, support and encouragement of the partner after marriage will help the disease control and help the patient to build confidence and strength to overcome the disease.
Some people say, “the power of love is great”, and this is not a bad saying at all.
When a young man hears that his girlfriend has lupus erythematosus, he has a fear of the word “lupus”, which is actually just a disease name. If we rename lupus erythematosus as “erythematosis”, people may not mind.
What’s more, lupus erythematosus is not an infectious disease, nor is it a genetic disease like Down’s syndrome or mental illness, so it is perfectly possible to get married and have children with lupus erythematosus. However, the development of the disease must be controlled during long-term follow-up by doctors. Generally, with small doses of hormone use, the disease can be considered for marriage and childbirth after the condition is stabilized for more than one year.
21.Why is it easy to lose hair?
Lupus alopecia is mainly caused by small vasculitis under the skin, which leads to impaired supply of nutrients to the hair follicles and affects the growth of hairs. It is completely different from what we usually call “seborrheic alopecia”. Generally, after the disease is controlled, the hair can be regenerated, but the hair loss at the disciform erythema cannot be regenerated. Especially, it is worth noting that hair loss in lupus erythematosus patients again may be a relapse of the disease, which should be highly noticed.
22.Why does sun exposure induce SLE?
About half of the SLE patients will develop photosensitivity. The ultraviolet rays in sunlight can denature the DNA of skin cells and stimulate the body to produce antibodies, thus triggering the disease. Therefore, patients with photosensitivity should wear a hat or umbrella when they go out in sunny weather to avoid the aggravation of the disease by direct UV radiation.
23.Can SLE patients use cosmetics?
Certain cosmetics contain chemical components, especially chemicals with aromatic amines, which may induce lupus. In addition, cases of lupus occurring after hair dyeing or eyebrow tattooing have also been reported. Therefore, it is best not to use cosmetics in order to avoid the stimulating effect of chemicals.
24. Is SLE an infectious disease?
SLE is not a contagious disease. It is completely different from hepatitis and skin diseases, and is an autoimmune disease that is not contagious to family members. Even if there is skin damage, it will not be contagious by contact. Therefore, please rest assured that patients and their families are not infected.
25.How do I know that SLE has relapsed?
Consider a relapse of the disease if the following symptoms and abnormalities of laboratory tests occur
1) Fever of unknown origin. This means that the fever cannot be explained by a cold, throat, lung, or urinary tract infection, and is not due to other diseases;
2) A fresh rash or a vasculitis-like rash on the finger (toe) ends or other areas;
3) recurrence of joint swelling and pain;
4) significant hair loss;
5) Fresh ulcers of the mouth and nose;
6) Pleural fluid or pericardial effusion;
7) Increased proteinuria;
8) Significant leukopenia or thrombocytopenia or anemia;
9) Neurological symptoms, such as headache, vomiting, convulsions;
10) Increased titer of anti-double-stranded DNA antibody;
11) Increased blood sedimentation of 50 mm/hour or more;
12) Decrease in complement, especially C3.
The best way to prevent recurrence is to take the medication on time and follow up regularly!
26.Will SLE be hereditary?
The cause of SLE is the result of a combination of factors, influenced by genetics, environment, infection, endocrine and autoimmune factors. This disease can only be called a genetic predisposition, but not a genetic disease. Most of the children of patients are normal, healthy and active.
27.Can SLE be cured?
The cause of SLE is not clear, so it cannot be cured by either Chinese medicine or Western medicine. However, there is sufficient evidence that reasonable medication can lead to long-term remission of the disease and patients can live a normal life. Medical practitioners are working hard to research and find the cause of its development. It is believed that in the near future, SLE will be completely cured one day.
28.Patients are invited to do the “five dos and five don’ts”.
Five wants: to follow the doctor’s advice, to take sufficient rest, to have a good spirit, to eat a reasonable diet, to review regularly.
Five don’ts: don’t use drugs indiscriminately, don’t overexert yourself, don’t expose to sunlight, don’t listen to hearsay, and don’t stop taking drugs suddenly.
Please keep optimistic mood of SLE patients
Only by maintaining an optimistic mood can we establish confidence in winning
Only by maintaining an optimistic mood can we better cooperate with the doctor’s treatment
Only by maintaining an optimistic mood can you take better care of your body
Only by maintaining optimism can you better overcome the disease and recover your health.