Lupus and daily life: the right reflexes

Living with lupus involves learning, with the help of professionals in the field of...

health (during Therapeutic Patient Education - TPE sessions), to know their illness and to recognize situations likely to promote certain manifestations or complications.

In addition to prescribed treatments, several systematic measures can help to preserve the patient's health and quality of life on a daily basis.

Protect yourself from the sun

Ultraviolet rays can promote or worsen certain manifestations of lupus, particularly cutaneous ones.

Appropriate protection is therefore important: limit sun exposure, seek shade, wear covering clothing (cotton, long sleeves, wide-brimmed hat) and use appropriate sun protection on exposed areas (UV-blocking cream).

Protection against ultraviolet (UV) radiation should be tailored to your activities and the recommendations of your medical team. Avoid going out during the hottest hours, between noon and 4 p.m.

Maintain appropriate physical activity

Regular physical activity, adapted to each person's health and abilities, contributes to maintaining physical fitness and general well-being.

Resuming or continuing an activity should be gradual. In case of a flare-up, significant fatigue, pain, or specific organ involvement, the activity may need to be adapted.

When necessary, the doctor can refer the patient to a suitable physical activity.

Avoid tobacco

Tobacco use is a detrimental factor to general and cardiovascular health. It is also identified among the environmental factors associated with lupus. Furthermore, it interferes with the effectiveness of hydroxychloroquine and may increase lupus activity.

Quitting smoking is therefore strongly recommended. Support from a healthcare professional can be offered to people wishing to quit smoking.

Respect your treatment

Even when the illness seems to have subsided or the symptoms have lessened, it is important to continue treatment as prescribed by your doctor. No medication should be stopped, restarted, or changed without medical advice.

Regular medication intake (known as good adherence) contributes to disease control and the prevention of flare-ups and complications.

Maintain regular medical follow-up

Medical monitoring remains necessary even during periods when lupus is not very active, or even during periods of clinical and biological remission.

Consultations and examinations allow, in particular, monitoring of disease activity, detection of certain sometimes silent conditions, evaluation of the effectiveness of treatments and monitoring of any potential adverse effects.

The frequency of follow-up depends on each patient's situation.

Vaccinations and infection prevention

People with lupus have an increased risk of infections, particularly due to certain treatments that reduce immune defenses (corticosteroids, immunosuppressants).

Vaccinations should be reviewed with the medical team based on the disease, its progression, and ongoing treatments.

Some vaccines may be particularly recommended, while others may be contraindicated in certain situations of immunosuppression.

It is therefore preferable to check one's vaccination status with one's doctor rather than deciding on vaccination alone.

Pay attention to unusual changes

Over time, many patients learn to better recognize the usual manifestations of their illness.

The appearance of a new, persistent or unusual symptom, or a significant worsening of the general condition, should be reported to the medical team.

Not every new symptom should be automatically attributed to lupus: other health problems may also occur and require medical evaluation.

Key points to remember

The management of lupus is not based solely on medication.

Protection against ultraviolet rays, appropriate physical activity, smoking cessation, adherence to treatment, infection prevention and regular medical follow-up all contribute to the overall management of the disease.

Maintaining appropriate and regular physical activity.

These recommendations should always be adapted to each patient's individual situation in consultation with the healthcare team.

This information sheet is for general information purposes only. It does not replace a consultation or personalized medical advice for diagnosis and follow-up.

Sources: PNDS Systemic Lupus in Adults and Children (2024) — Reference Centres / RAISE / FAI²R Network; High Authority for Health (recommendations relating to physical activity and chronic diseases); Health Insurance.

Content reviewed and validated by Professor Saïd Norou DIOP, specialist in Internal Medicine, medical advisor for TAHIRAH CARE.