Help improve the quality of life of lupus patients!

Systemic lupus erythematosus (SLE) is prone to involve multiple organs and systems throughout the body, which has a great impact
on the patient's health.
But with the continuous improvement of our medical level, systemic lupus erythematosus is far less terrifying than we imagine, as long as through standardized scientific treatment and regular follow-up, our butterfly friends can also embrace health and have a beautiful and happy life
like ordinary people.
This is also the significance of
the "Life is extraordinary, dance with butterflies" lupus knowledge public welfare science popularization activity launched by our joint Mijian platform.
Nowadays, due to the impact of the epidemic, the consultation of butterfly friends across the country has been affected and affected
to a certain extent.
The form of online live broadcast undoubtedly broadens the communication channels between doctors and patients, and benefits the majority of butterfly friends in a more convenient form, which is also a very happy and gratifying thing
.
Finally, we sincerely wish that this activity can allow butterfly friends to gain more lupus knowledge, improve confidence and courage to overcome the disease, and wish all butterfly friends can not be afraid of lupus and full of hope! ”

SLE requires attention to pregnancy management

The highest incidence group of SLE is in women
of childbearing age aged 20-49 years.
Pregnancy in SLE patients is closely related to the development of the disease, so pregnancy management
needs to be paid more attention.
To this end, Dr.
He Miao summarized the key points
of pregnancy management in lupus patients.

Pregnancy preparations

● Women of SLE childbearing age can consider preparing for pregnancy, and they must consult rheumatology and immunology and obstetricians and gynecologists for evaluation
before pregnancy.

● SLE patients with stable condition for at least 6 months, no damage to important organs, 24h urine protein quantitative ≦ 0.
5g, discontinuation of possible teratogenic drugs for more than 6 months, prednisone < 15mg/day, pregnancy can be considered<b10>.

Not the right time to get pregnant

● Symptomatic pulmonary hypertension, restrictive pulmonary lesions with ventilation disorders

● Heart failure

● Chronic renal failure

● Severe preeclampsia, uncontrollable HELLP syndrome with treatment

● Stroke in the past 6 months and severe lupus activity in the past 6 months

Principles of drug use during pregnancy

●Hydroxychloroquine: a drug that has been clinically proven safe, and hydroxychloroquine should be used after pregnancy in antiphospholipid-positive patients to reduce the risk of
thrombosis.
It is recommended for patients with SLE who are anti-SSA or anti-SSB-positive to reduce the incidence
of fetal heart block.

●Glucocorticoids: Fluoride-free glucocorticoid formulations are recommended at doses that vary depending on the severity of the patient's illness, with the smallest controllable dose
possible.

●Immunosuppressants: azathioprine, cyclosporine A, and tacrolimus are available during pregnancy, and the prohibited immunosuppressants are methotrexate, mycophenolate mofetil, leflunomide, cyclophosphamide, and triptolimus
.
Patients who are already taking these drugs are advised to consider pregnancy
six months after stopping the drug.

In addition to pregnancy, "SLE disease is complex, long-term, and lifelong disease, so patients should build confidence
in long-term treatment.
" During the treatment, the doctor will make a diagnosis according to the patient's condition and select the most suitable drug
.
But the most important thing is still the patient's long-term cooperation and taking the medicine
on time.
In addition, in addition to drug treatment, patients should also avoid some factors that affect the development of the disease in their lives, and do a good job in daily management (work and rest/mood/confidence/family and social support, etc.
) to better control the progression
of the disease.
”

The following daily management points are summarized for everyone:

Prevention of relapse

●Avoid contact with common dangerous substances: such as cosmetics, hair dyes, etc.
; Avoid the use of sulfonamides, tetracyclines to enhance photoallergy drugs; Avoid contact with quartz

● Pay attention to sun protection and quit smoking

●Prevent infection, avoid crowded public places, and wear a mask

● Moderate exercise, appropriate psychological support, reduce anxiety and depression

● Avoid photosensitive foods such as figs, celery and shiitake mushrooms, and avoid spicy and smoked foods

● Supplement a high-quality protein, low-fat, low-sugar and vitamin-rich diet, especially calcium, potassium and vitamin D to prevent osteoporosis caused by hormones

Positive awareness of the disease,

Abandon misconceptions and embrace a better tomorrow

How to help lupus patients achieve a good life? It was explained
from five aspects: diet, vitamin D supplementation, exercise, sleep, and psychological support.

Dietary intervention is very necessary, but drug treatment is the top priority, so lupus patients must actively cooperate with treatment, supplemented by a reasonable diet, is an excellent treasure book
to control the disease.
”

Reasonable diet, dietary contraindications

●Mutton, dog meat, horse meat, venison and donkey meat may induce or aggravate the disease and should be avoided

● Shiitake mushrooms, celery, alfalfa and other foods may increase the skin's photosensitivity, and should also be avoided

●Allergenic foods such as sea shrimp and crab should be avoided

● Due to long-term use of hormones, the gastrointestinal mucosa of lupus patients is often damaged, so sour, spicy and spicy foods should not be eaten more

● Long-term use of hormones, easy to increase blood sugar, recommended low sugar diet

● Lupus patients also need to pay special attention to a light diet and control salt intake

Regarding exercise, Dr.
Qin Lei has this to say: "When you have lupus, exercise may be the last thing you want to do
.
However, if you are not in a bad active period, exercise is very beneficial
.
”

Exercise considerations

● Sun protection (if you ride or walk outdoors, be sure to wear sunscreen, long sleeves and long pants, and a hat)

● Feel the abnormality of your body in time, and if you feel tired or sore, stop and rest immediately (you can continue after feeling better)

● Start slowly, step by step

Regarding sleep, he also shared: "Excessive fatigue may trigger a recurrence of lupus, so getting enough sleep is important
.
Difficulty falling asleep can be caused by a variety of reasons, including pain, anxiety, and medication use
.
”

Get enough sleep

Don't consume any caffeine in the afternoon or evening

● Don't nap too long during the day

● Take a warm bath before bed and eat less before bed

● Avoid excessive concentration in the bedroom, such as watching TV, playing with computers and mobile phones

● Play stress-reducing videos or some soothing music to ensure that the room temperature is suitable and there is no light

Summary:

Standardized treatment, daily care,

A healthy mindset is a wolf warrior

"Helping lupus patients achieve a quality of life is inseparable from standardized treatment and proper care, but the most important thing is to have a healthy mindset!"