20 frequently asked questions by patients with systemic lupus erythematosus

1What is the incidence of SLE?

The age of onset of the disease is mostly in young adults, and women are far more than men, the ratio of men and women is 1:7~10, and women of childbearing age account for the majority
.
Incidence in people aged 20 to 40 years accounts for about
47% of the total number of patients.
The incidence in children and the elderly is much lower
than in young adults.
Relatively speaking, the onset of disease in elderly patients is generally mild, while the onset of children is more acute, and the disease is more severe and the prognosis is poor
.

The incidence of lupus erythematosus is related to race, and the incidence of colored people is higher than that of white people, and the prevalence in China is much higher than that of Western countries
.
Overseas Chinese populations also have a high prevalence rate
.
The incidence is 4 times higher
in black Americans than in white people.

Lupus erythematosus is widely distributed all over the world, regional differences are large, statistics show that: the United States is about 50/100,000, the United Kingdom 4~18/100,000, Australian indigenous people 50/100,000, India 3.
2/100,000, and China is 70/100,000.

The mortality rate of lupus erythematosus was once thought to be related to race, but surveys and studies in various countries and regions have found that its mortality and survival rate are closely related to the level of local economic development and medical care, and there are many "wolf" heroes who have not relapsed for 10, 20, or even 30 years, so active treatment and following the doctor's advice must be able to obtain a good quality of life!

2Is lupus inherited?

Family surveys have shown that systemic lupus erythematosus (10%~20% of first- and second-degree relatives of SL patients can have the same disease; Among monozygotic twins, if one of them has the disease, the probability of the other being sick is 25%~50%; For fraternal twins, if one person is ill, the probability of the other being ill is 5%.

Therefore, lupus erythematosus has a certain genetic tendency, but there are also many children of lupus erythematosus patients who do not have the disease, indicating that heredity is only a factor leading to lupus, as an internal cause, but also other external factors such as environment, infection, endocrine, autoimmunity and other external factors will occur
.

3Is lupus erythematosus contagious?

Lupus erythematosus is a specific autoimmune disease
involving multiple factors (genetics, sex hormones, environment, infection, drugs, immune response) and other links.

Most medical practitioners generally believe that the pathogenesis of lupus erythematosus is the number and dysfunction of immunocompetent cells, resulting in immune
dysfunction.
A large number of autoantibodies are produced in the body and cause immune complex (type III) and cytotoxic (type II) hypersensitivity reactions, resulting in extensive tissue damage and multi-system clinical symptoms
.

After clarifying the pathogenesis of lupus erythematosus, we know that the disease is not contagious
.

4 Environmental factors that cause lupus erythematosus

What are they?

The environment is an important factor in the change of human immune function, and many factors are related to the onset of lupus: such as ultraviolet radiation and hair dyes containing aromatic amines
.

In addition, cold, strong electrical light exposure can also induce or aggravate the disease, some localized discoid lupus erythematosus can evolve into systemic after sun exposure, and some chronic type evolves into acute type
.
Therefore, patients with lupus erythematosus should try to avoid direct ultraviolet radiation to avoid aggravation
of the disease.

What are the main symptoms of 5SLE?

Most of the onset of systemic lupus erythematosus is in the spring, and the first symptom of most patients is a bright red macular rash on the face, which is limited to the cheeks and bridge of the nose on both sides, with clear edges, and the rash looks like a butterfly, commonly known as "butterfly erythema"
.
This rash also has photosensitivity, which darkens and edema worsens
after outdoor sun exposure.
Touching the edges of the erythema with your hands, there is a soft feeling that the patient often does not have itching
.

This rash pattern looks similar to other allergic skin conditions on the face, such as cosmetic dermatitis
caused by cosmetic allergies.
However, although the rash of cosmetic dermatitis also has photosensitivity manifestations, the erythema often does not involve the bridge of the nose, touches the edge of the erythema, does not feel soft, and patients with cosmetic dermatitis have obvious itching
.

In addition, patients with early lupus erythematosus often have chilblain-like skin disease manifestations
on the back of the hands.
The back of the hands has edematous erythema of different sizes and irregular shapes, symmetrically distributed, generally does not ulcerate, does not itch, and has burning pain, called erythema
multiforme.
This rash is not affected by the seasons and exists all year round, while chilblains tend to occur in winter, often ulcerate, and have obvious itching
.

What's more, early lupus erythematosus is often accompanied by many unobtrusive systemic symptoms
.
Such as soreness in joints around the body, low-grade fever, fatigue, anemia, etc
.

Because there is a disease factor in the blood of early lupus erythematosus patients - lupus erythematosus factor, which can destroy the human blood cells, joint cavity, liver, kidneys, heart, brain tissue, etc
.
At this time, blood tests are performed, with the following laboratory changes: red blood cells, hemoglobin, white blood cells, platelets are significantly reduced, erythrocyte sedimentation rate is increased, and then immunological examination, and the following laboratory indicators appear: positive antinuclear cell antibodies, positive rheumatoid factor, and lupus cells
can be found in the blood.

Young and middle-aged and elderly women, if they have early rash manifestations of lupus erythematosus, accompanied by systemic symptoms, must go to the hospital in time for relevant laboratory tests
.

6Who should be considered for SLE?

Because systemic lupus erythematosus is more common in women in the reproductive period, women aged 15-40 years old should do SLE related examinations
if some of the following abnormalities cannot be found for clear reasons.

(1) Joint swelling and pain for more than 3 months, unexplained muscle pain, muscle weakness;

(2) Long-term fever of unknown cause;

(3) Recurrent oral and nasal mucosal ulcers of unknown cause;

(4) Pale, numb or uncomfortable fingers when exposed to cold or emotional agitation;

(5) Erythema on the cheeks lasting more than one month, mainly distributed on the cheeks and the bridge of the nose, and aggravated after sun exposure;

(6) recent massive hair loss;

(7) Unexplained epilepsy, spasm seizures;

(8) Unexplained heart, pulmonary, pleural or renal lesions;

(9) Thrombocytopenia, leukopenia or anemia;

(10) Abnormal urine test: protein, red blood cells or casts in the urine;

(11) Unprovoked liver function abnormalities, or persistent hyperglobulinemia, decreased plasma proteins;

(12) Unexplained erythrocyte
sedimentation rate increases.

Can 7SLE be cured?

As long as the exact cause of any disease is found, there is hope for a cure for the cause
.
Lupus erythematosus is a disease with extremely complex causes, and the exact cause has not been found so far, so it is difficult to cure
it by either Chinese medicine or Western medicine.

Therefore, patients should be psychologically prepared to fight the disease for a long time, and there should be no luck
.
Although the disease cannot be cured, there are now sufficient drugs and medical means to make the disease in long-term remission, and patients can live a normal life
after remission.

8 SLE patients in daily life

What to pay attention to

Because the onset or exacerbation of SLE is often related to the following factors: infection, sun exposure, surgery, pregnancy, emotional stimulation, certain drugs, etc.
, patients with SLE should pay attention to:

(1) Life should be regular, exercise appropriately, enhance physical fitness, avoid excessive work pressure, maintain adequate sleep, avoid emotional ups and downs, strengthen their understanding of the disease, and establish confidence
in life.

(2) Due to the long-term use of hormones and immunosuppressants, the immune function is weak, easy to co-infection, should try to avoid public places with many people; Various infections (such as respiratory, intestinal, and urinary tract infections) should be treated
promptly.

(3) Sun exposure can aggravate skin and internal organ damage, should avoid strong sun exposure, especially when going out in summer, should wear hats, umbrellas, and wipe sunscreen.

Certain foods and drugs can enhance the effect of photoallergy and should be avoided: such as sulfonamides, tetracyclines, celery, figs, shiitake mushrooms, etc
.

(4) Surgery and pregnancy are the two major barriers of SLE patients, and if they are not handled well, they will aggravate the condition, and the doctor should be informed of the condition of systemic lupus erythematosus and the situation of taking medication before surgery; If you are considering becoming pregnant, you should contact your rheumatologist to choose the best time to avoid recurrence and ensure the health of
the fetus.

(5) Since SLE most commonly affects the kidneys, drugs
with kidney damage should be used as little as possible.

(6) Long-term use of hormones is easy to cause osteoporosis, should pay attention to calcium supplementation and active vitamin D
.

(7) Do not increase or decrease or stop hormones without authorization, and should regularly contact the doctor to review the relevant indicators (1 time in 1-3 months of activity, 1 time in the stable period of half a year to 1 time a year), and adhere to treatment
under the guidance of a doctor.

9How should SLE patients choose employment?

In view of the close relationship between the occurrence of autoimmune diseases such as lupus erythematosus and physical and chemical factors in the environment, patients should pay special attention
when choosing a career.
Painters, chemical plants, building materials (chemicals), beauty salons, shoe industries, etc.
, are not suitable for lupus
patients.

What should I pay attention to in the diet of 10SLE patients?

Lupus erythematosus does not require strict taboos
.
There are only 2 principles to master in diet:

One is to avoid all kinds of allergies, each person's allergens are different, if you are not allergic to seafood, you can eat seafood; You can eat beef if you are not allergic to beef
.

The second is not to "get on fire", if you don't have a sore throat after eating chili peppers, fried peanuts, and fried fritters, you can eat it, but if you eat a sore throat, then don't eat
it.

For simple urine protein, and no renal function damage, should be timely supplementation of sufficient protein, but protein intake also has certain requirements, too much emphasis on high-protein diet, can cause glomerular hyperfiltration, over time to promote glomerulosclerosis
.

High-quality animal protein includes: eggs, milk, lean meat, etc.
, plant protein should be appropriately limited
.
For patients with renal impairment, it is necessary to limit the intake of protein, which can reduce nitrogen retention in the blood, reduce the burden on the kidneys, and delay the process of
renal failure.
Soy products should be eaten sparingly or
fasted.

11What are the commonly used drugs for SLE treatment?

(1) Non-steroidal anti-inflammatory drugs

In the treatment of systemic lupus erythematosus, it is mostly used in mild patients
with fever, joint aches, myalgia, fatigue and other symptoms, but no obvious internal organs or blood system affected.
Proper use of these drugs can relieve symptoms and reduce the amount of adrenocorticosteroids and their side effects
.
Ibuprofen, nimesulide, meloxicam, diclofenac sodium, dibumetone, etc.
can be selected for application
.

However, this class of drugs has adverse reactions such as digestive tract reactions, kidney damage, and elevated liver enzymes, and the course of treatment should not be too long
.
It should be used with caution in patients with systemic lupus erythematosus nephropathy to avoid aggravating kidney damage
.

(2) Glucocorticoid

As the main drug for the treatment of systemic lupus erythematosus, it has strong anti-inflammatory, antihyperplastic and immunosuppressive effects
.
It is indicated for acute onset of multisystem damaged lupus, non-infectious lupus hyperthermia that cannot be controlled by other methods, marked cytopenias, nephritis, central nervous system lesions, interstitial pneumonia and severe hepatitis
.

The dosage, route and duration of glucocorticoids depend on the severity of the patient's condition, general condition, concomitant medication, and response to treatment
.
The main complication of this therapy is infection, so it is not suitable for those with infection and very poor nutrition
.
In addition, too fast instillation can lead to reactive arthropathy and even cause heart rhythm disturbances and death
.

(3) Immunosuppressants

Immunosuppressants used to treat systemic lupus erythematosus include: cyclophosphamide, azathioprine, chlorambucil (also known as CBl348), methotrexate, vincristine and cyclosporine
.
It is commonly used in severe and refractory systemic lupus erythematosus, such as lupus nephritis and central lupus
.

Lupus arthritis requires little of this type of medication, except in a very small number of people with destructive arthritis, methotrexate
may be used.

(4) Botanical drugs, such as triptolide, white peony total glycosides, etc

In addition to the above types of drugs, there are some immunology-related treatments, such as plasma exchange and immunosorbent therapy, high-dose immunoglobulin pulse venous therapy, leukopheresis therapy, etc
.

In addition, the antimalarial drug hydroxychloroquine has become one of the cornerstones of
SLE treatment.
Biologically targeted agents have also been approved for the treatment
of SLE.

12Can people with lupus get married?

Since most lupus erythematosus occurs in women of childbearing age, whether lupus erythematosus patients can get married, and married life after marriage, etc.
, are questions that patients are concerned about and often ask
.

Patients with lupus erythematosus can not only get married, but also live a married life
like normal people.

In terms of sexual life, patients with lupus erythematosus need to pay attention to:

(1) Pay attention to hygiene, the body resistance of lupus erythematosus is poor, plus drug treatment may weaken the body's resistance, so it is more likely to occur gynecological infections than ordinary people;

(2) Avoid unplanned pregnancies, but do not take oral contraceptives
.
Because pregnancy and childbirth are dangerous when the condition has not been relieved, abortion and induction of labor are also dangerous, and oral contraceptives are a negative effect
on lupus erythematosus.

13Can people with lupus have children?

In the past, pregnancy and childbirth were once listed as contraindicated by lupus erythematosus, because many patients deteriorated in the second or third trimester of pregnancy, or within a few months after delivery, which was life-threatening
.
Most patients with lupus erythematosus can now achieve remission after correct treatment, and most can safely survive pregnancy and
perinatality.
Therefore, patients with lupus erythematosus can rest assured to be mothers
.

However, pregnancy and childbirth in patients with lupus erythematosus need to be performed
under the guidance of a doctor.
The first is to grasp the timing of pregnancy, if the daily hormone does not exceed 10 mg of prednisone, and immunosuppressants are stopped for 6 months, and the condition is still stable after reexamination, pregnancy can be considered
.

During pregnancy, if there is no discomfort, blood is tested every three months to check for indicators
related to lupus erythematosus.
Check your urine routine once a month and test your blood
at any time if your urine is positive for protein.
Obstetrics needs to be monitored
by an obstetrician.

Although a pregnancy is planned under the guidance of a doctor, a small percentage of patients may have a pregnancy accident
during pregnancy.
If the condition worsens, the drug must be administered under the
guidance of a doctor.

14 Whether it is necessary for patients with lupus erythematosus

Taking hormones?

For simple discoid lupus erythematosus patients, there is no internal organ and joint damage, indicating that lupus cells are inactive, it is not necessary to take hormones, and hormone ointments
can be applied locally.

For some SLE patients with only mild joint pain and no visceral damage, it is also not necessary to take hormones
.
However, the number of the above two types of patients is very small, and for most patients, hormones must pass
.

In most cases, as soon as lupus erythematosus is diagnosed, doctors will give the person
hormones.
But there are also patients who have achieved zero hormone therapy with the help of doctors, so everyone must trust the doctor and cooperate with a good doctor
.

15How are hormones used to treat lupus erythematosus?

Hormones are a double-edged sword, used well can cure diseases, and poorly used can cause diseases
.
The efficacy of hormones on lupus is certain, and the key is to evaluate the benefits or risks of using hormones for patients before taking the drug
.
If it is a big benefit, it is necessary to lose no time in using
it.

Before treatment, first ask: Is the case mild or heavy? The so-called mild is only fever, skin diagnosis, arthritis, Raynaud phenomenon, a small amount of serosal effusion, no obvious systemic damage cases; Severe refers to cases
of simultaneous involvement of one or several organs, such as lupus nephritis, lupus encephalopathy, acute vasculitis, interstitial pneumonia, hemolytic anemia, thrombocytopenic purpura, and large serosal effusion.

Can patients with 16SLE use cosmetics?

Most of the patients with lupus erythematosus are young women, especially beauty
.
After many patients suffer from lupus erythematosus, rashes often appear on the face and other parts, which seriously affects the appearance and causes serious psychological burden
to patients.
Some patients are in a hurry and try to cover the rash with foundation and rouge, but they don't know that this will make the disease worse! Many cosmetics contain aromatic amines and chemicals, which can induce lupus!

There have also been examples
of lupus induced by hair dyeing, eyebrow tattooing and breast augmentation.
For patients with facial erythema, it is best not to apply any makeup, when the disease is controlled and relieved, the erythema will naturally disappear and will not leave scars
.

During the treatment of the disease, even if there is no erythema on the face, do not use cosmetics casually, because many patients become allergic after getting lupus erythematosus, and the cosmetics that were previously applicable will now be allergic
.
At this time, it is best to use some natural skin care products, such as olive oil, almond oil, coconut oil, etc.
, which have a good
effect on skin care.

Everyone has a love for beauty, SLE patients are not absolutely unable to use cosmetics, but must be used according to the situation, in a stable case to choose gentle and non-irritating use Oh!

17SLE patients are well hospitalized

Or do you opt for outpatient treatment?

The advantages of hospitalization are: it is conducive to the rescue of critically ill patients, and some more complex examinations and diagnoses
can be done under hospitalization conditions.
If it is not a critically ill patient, the necessary examinations and diagnosis are already clear, and hospitalization is meaningless with only general treatment
.

18Is it true that Chinese medicine can cure serious diseases?

Lupus erythematosus is a Western medicine concept, and some conditions recorded in ancient medical texts are similar to lupus, but there is no such concept
as lupus.
The first expert in TCM treatment of lupus should be Professor
Wang Weichuan of Sichuan College of Traditional Chinese Medicine.

He pioneered the use of Chinese medicine to treat lupus erythematosus in the 60s of the 20th century and was very successful
.
According to patients who have been treated by the elderly, although Professor Wang is very proficient in the diagnosis of pulses, the treatment of lupus erythematosus mainly relies on various laboratory changes to guide treatment
.
Because only in this way can we correctly judge the condition and guide the medication
.

Is it true that 19 partial remedies cure serious diseases?

It should be said that since there are humans, there have been patients with
lupus erythematosus.
Humans have paid a huge price
in understanding lupus.
Before the 40s of the 20th century, 80% of people with lupus died
within two years.
Until glucocorticoids were used for the treatment of lupus erythematosus, the 2-year mortality rate was rapidly reduced to less than
5% within 2 years.
In the decades that followed, the treatment of lupus erythematosus made great progress
.
It is impossible
to treat such a serious disease with a single prescription.

Some people think that partial remedies should cure serious diseases, or think that we should "attack poison with poison", and use this concept to guide themselves to find medicine, which is incorrect
.

Because Chinese medicine does not know about this disease, there are few records of this disease in ancient books
.
Therefore, modern Chinese medicine treats this disease through its own knowledge of Chinese medicine and the diagnosis and laboratory indicators of Western medicine, as well as the experience
of communication with patients.
If someone claims that their treatment (referring to lupus erythematosus) is ancestral, it must be a lie
.
Because in the 60s and 70s of the 20th century, there was a way
to treat this disease.

20Do you want to tell the people around you about your illness?

It depends on the specific circumstances of each individual
.
However, given that most people currently have a misunderstanding of lupus, some people even think that lupus erythematosus is an infectious disease and a disease
equivalent to cancer.
If you think that the misunderstandings and opinions of people around you will bring trouble and stimulation to yourself, and then affect your life, then if it is not necessary, you can leave this "little secret" to yourself and your family
.