1, adhere to the two “five basic principles”: “five to” and “five do not”. The “five to” refers to “to follow the doctor’s advice, to rest fully, to be happy, to a reasonable diet, to regular review”. “Five don’t” refers to “don’t use drugs indiscriminately, don’t overwork, don’t sun exposure, don’t hearsay, don’t suddenly stop medication”.
2, have a good environment for health and treatment: all patients with long-term stable disease, have a good environment for health and treatment. For married patients, having a considerate husband and a warm family is the fundamental guarantee to maintain the stability of the disease.
3. To rest and do proper activities: rest is important for lupus in the active stage. A serious attack often requires rest for months before a slow return to normal activities, and patients should have the help of family members to do housework (especially heavy housework) in the first few weeks after discharge. Patients who have a job should also take a half break for the first few weeks after discharge before they can officially go to work. Sleep time at night should be 8-10 hours, and an early morning break and a lunch break or a nap should be arranged every day. Naps are also required by the body’s biological clock. The remission period can be appropriate activities and exercise to enhance physical fitness and prevent long-term hormone-induced weight gain, osteoporosis and muscle disease, but the activities carried out should be to the extent that they do not feel fatigue afterwards.
4, attitude towards the disease: the prognosis also depends on the attitude towards the disease. To comply with medical advice; to strengthen their knowledge of the disease, to build confidence in life. Some people are pessimistic and disappointed since the disease, some are full of care, some are reluctant to take hormones, some are biased, looking for “secret remedies”, wrongly thinking that the more money spent on treatment, the better the effect. You should be “strategically contemptuous of the disease, tactically important to the disease”, keep a happy mood, less sulking, open-minded, do not care too much about your disease. Avoid excessive work stress, emotional ups and downs and sentimentality. Make time for recreational activities, but do not exhaust yourself. Don’t believe in general articles or small advertisements about lupus treatment in the news media. Don’t blindly believe in charlatan doctors, and make sure to receive treatment in regular hospitals.
5. Avoid triggers that aggravate the disease: such as infection, during or after pregnancy, surgery, sudden discontinuation or rapid reduction of hormones, or overexertion, sun exposure, etc. Consider a relapse of the disease and seek prompt medical attention if the following conditions occur.
(1) Fever of unknown origin, i.e. fever that cannot be explained by a cold, pharyngeal, pulmonary and urinary tract infections, etc.
(2) reappearance of a new rash or an accompanying vasculitis-like rash on the ends of the fingers (toes) or elsewhere.
(3) Recurrence of joint swelling and pain.
(4) Significant hair loss, excluding hormonal causes.
(5) Fresh ulcers of the mouth and nose.
(6) development of pleural or pericardial effusion.
(7) increased proteinuria.
(8) marked 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 complement C3.
6, prevention of infection: long-term use of hormones and immunosuppressive patients with reduced immune function, easy to co-infection, and relapse or aggravation of the disease, usually should pay attention to: try to avoid going to crowded public places; stable patients can be vaccinated (active patients should not be carried out), such as once a year for the influenza virus and pneumococcal vaccination (but there are reports of individual patients relapse after vaccination). You should wash your mouth regularly, wash your mouth in the correct way, and change your toothbrush regularly, especially not to share a toothbrush with the whole family. Wash your vulva regularly, rinse with diluted furacilin or alkaline liquid, change your underwear regularly, and disinfect your underwear by exposing it to sunlight frequently. Avoid catching a cold and do not eat unhygienic food. When various infections (such as respiratory, intestinal and urinary tract infections) occur, seek medical treatment promptly. When choosing treatment drugs, try to use less drugs that are damaging to the kidneys, as lupus most often involves the kidneys.
7. Avoid make-up: Patients with obvious erythema on the face can apply hormone-containing hydrocortisone cold cream locally for a short time, but not with cosmetics, because some cosmetics contain chemical reagents, especially chemicals with aromatic amines, which can aggravate the rash or transmit lupus. Although it cannot be said for sure that hair dyeing or eyebrow tattooing can definitely induce lupus, at least a considerable number of patients have had hair dyeing, eyebrow tattooing or breast augmentation for a short period of time before getting the disease.
8. Avoid sunlight exposure: it can aggravate skin and internal organ damage. Regardless of whether there is a rash or not, lupus patients should not be exposed to direct sunlight for more than 15 minutes in high summer. Those with skin rashes and photosensitivity should avoid prolonged exposure to strong sunlight (such as swimming or sunbathing in beach baths), and should not work under direct ultraviolet light. When working outdoors in summer, you should wear a straw hat, umbrella, long-sleeved clothes and sunscreen.
9. Daily diet: The diet of lupus patients with milder disease generally has no special requirements, and as long as there are no food allergies, there is usually no need for contraindications. However, the following points should be noted.
(1) Avoid foods that can induce lupus as much as possible: such as celery and figs containing psoralen, mushrooms and smoked foods containing hydrazine groups, alfalfa-like seeds and pods containing L-cabbage. These foods have an enhancing effect on photoallergy. In addition, sulfonamides and tetracyclines also have such effects and should be avoided as much as possible.
(2) For more information on how to prevent possible side effects of long-term corticosteroid use, please reply to “hormones” on this platform.
(3) Pay attention to diet according to the severity of organ involvement: If the disease is in advanced stage and there is renal failure, protein intake should be controlled to reduce the production of urea nitrogen and creatinine; if the blood potassium is elevated, food containing high potassium should not be eaten. Patients with obvious edema and low urine output should take a decoction of 40 grams of dried watermelon peel and 60 grams of fresh thatch root in 3 portions to eliminate edema and improve urine flow on the basis of diet control. Patients with gastrointestinal tract involvement mostly have abdominal distension and abdominal pain, so it is necessary to control chocolate or milk which can increase the production of intestinal gas. Patients with hematologic involvement such as thrombocytopenic purpura can put some sesame oil (sesame oil) in their cooking to promote blood clotting, and black sesame is also beneficial for elevated cholesterol and hypertension.
(4) There are no complications to pay attention to diet: for example, patients who take isoniazid (Remifent) with tuberculosis infection, should control eating fish, because fish contains more histidine, histidine can be converted into histamine which is easy to make people have allergic reactions, rapid clearance of histamine depends on the oxidation of monoamine oxidase, and isoniazid is an inhibitor of monoamine oxidase, monoamine oxidase and synthesis is inhibited, the body’s histamine The accumulation of monoamine oxidase and synthesis is inhibited and an allergic reaction occurs. This condition only gradually disappears after 2 weeks of drug discontinuation.