Treatment and prevention
What do you need as someone affected by lupus?
Any medication-based treatment you may need must be tailored to the individual course of the disease.
People affected need doctors who are familiar with lupus. People affected need doctors who take them seriously. An equal relationship between healthcare professional and patient is of great importance.
What do people affected need?
Input from professionals and those affected
- Regular medical check-ups by lupus specialists, including blood and urine tests.
- Depending on the symptoms, different medications must be taken. For joint and skin problems as well as general symptoms such as fatigue, these include antimalarials (usually Plaquenil); if organs are affected, immunosuppressants are also used, sometimes in combination with corticosteroids (cortisone).
- Support from family and friends, as well as in the workplace. Exchange with other people affected.
- Regular, adapted physical activity (even if only light).
- A balanced diet (plenty of omega‑3, calcium and vitamin D3).
- Minimising cardiovascular risk factors such as smoking, excess weight, high blood pressure and high cholesterol. Treatment of diabetes mellitus.
- On a psychological level: entering into a “friendly relationship” with the disease.
Therapy and therapy goals
In therapy, doctors and people affected by lupus each have their own tasks.
In consultation with their treating doctors, people affected should find out which therapy is best suited and has the greatest possible effect. Many factors play a role. These also include personal factors such as family situation, autonomy, mobility, motivation and values.
We recommend a comprehensive assessment by lupus specialists.
People affected by lupus and doctors should set a therapy goal. The therapy goal is re-analysed at every consultation. If necessary, the therapy and therapy goal are adapted to the course of lupus. It is important that people affected by lupus are involved in considerations and decisions.
In principle, the goal of therapy is to ensure a stable state of lupus.
Effective therapy prevents flare-ups and long-term damage
Optimizing outcome in SLE: treating-to-target and definition of treatment goals.
A. Doria et al; Autoimmunity Reviews 2014 (Image click here)
Lupus is a chronic disease that usually progresses in flare-ups. Longer-lasting quiet phases (remissions) are possible, but can abruptly turn into active flare-ups.
Therapy goal 2:
Sustained control of SLE. Reducing steroid use.
Source: Iking-Konert, Stadtspital Zürich: (Image click here)
Talk about it openly
Only you know and feel exactly how you are doing!
Common symptoms include pain and severe fatigue. Lupus can also be psychologically distressing. Reasons include visible symptoms (butterfly rash), invisible symptoms, lack of understanding in one’s surroundings and stress in the workplace.
The more precisely you describe these problems to your treating doctors, the better they can address them and work with you to find solutions.
Prepare well for your doctor’s appointment. In addition to all your questions, write down what is important to you and what you need or want.
Make sure your questions are answered. If your treating doctors cannot provide an answer immediately, arrange an appointment (in the practice or by phone) for a later follow-up.
Medication
There is not ONE lupus medication.
Depending on the type and severity of SLE and whether organs are affected or not, different medications are used for treatment.
Basic medications include antimalarials, immunosuppressants and possibly cortisone, especially during acute flare-ups, or non-steroidal anti-inflammatory drugs (NSAIDs). Biological therapies are also being used increasingly often.
Medication-based treatment must be regularly reviewed in line with individual symptoms, findings and the respective course of the disease. Regular doctor’s visits are essential to adjust the therapy.
A trusting relationship with treating doctors is very important. It promotes compliance (active participation in therapy).
You can find detailed information on the listed medicines (steroidal anti-inflammatory drugs and basic medications) as well as on other medicines (non-steroidal anti-inflammatory drugs, painkillers, osteoporosis medicines) here:
If, in addition to lupus, antiphospholipid syndrome (APS) is present, blood-thinning medication must be taken.
Medication | Brand name | Organ involvement | Approved for |
|---|---|---|---|
Corticosteroids | Spiricort | for acute inflammation | . |
Hydroxychloroquine | Plaquenil | all | SLE |
Methotrexate | Methrexx | inflammatory | off-label |
Azathioprine | Imurek | All | SLE |
Mycophenolic acid | CellCept | all | Lupus nephritis II, III, IV |
Belumimab | Benlysta | All, except haematology | Lupus nephritis II, III, IV |
Anifrolumab | Saphnelo | Non-renal | Non-renal SLE |
Cyclophosphamide | Endoxan | Organ-threatening | Lupus nephritis II, III, IV |
Voclosporin | Lupkynis | Lupus nephritis | Add-on lupus nephritis |
Below is an overview of the most commonly used medications in the treatment of lupus.
Source: Aerzteblatt.de – DOI: 10.3238/PersImmun.2023.02.10.01
Medicines for rheumatic pain
Here is an interesting video from the Swiss League Against Rheumatism about the treatment of rheumatic pain:
The video (duration 3 1⁄2 min.) presents medication-based therapies: painkillers, anti-inflammatory drugs, immunosuppressants, biologics, psychotropic drugs. Their effects, side effects and risks are explained briefly and clearly.
Alternative therapies
A wide range of complementary options
In many cases, it is effective when medical treatment is accompanied by additional therapies, for example physiotherapy, occupational therapy, water aerobics, massage, tai chi, qi gong…
Alternative therapies such as traditional Chinese medicine (TCM) can sometimes provide relief and improve psychological coping with lupus. However, they have no proven effectiveness; alternative therapies are a good complement to conventional medicine.
Psychological counselling
The impairments in everyday life caused by pain and fatigue, as well as the fact that the course of the disease cannot be predicted, place a psychological burden on many people affected.
Lupus is a rare disease and therefore not well known. As the disease is mostly invisible, symptoms are often not noticed by those around you. The condition is also complex. This is why many people affected find it difficult to talk about their lupus.
Psychotherapy can support people affected in dealing with stressful aspects of the disease. It can improve psychological well-being. For health insurance to cover the costs, psychotherapy must be prescribed by treating doctors. Check with your health insurance provider for the exact conditions.
You can find more information on the “Mental health” page.
SAV3E – THE BASIC MEASURES FOR SLE
- S – Sun protection: SPF 50, opaque clothing, hat
- A – Antimalarials: hydroxychloroquine 200 mg/day (≤ 5 mg/kg) or as prescribed by your doctor
- V1 – Vitamin D: 20,000 IU vit. D/week or 1,000 IU/day (discuss with your doctor)
- V2 – Vaccination: standard vaccinations + vaccinations against: flu, pneumococci, shingles (discuss with your doctor)
- V3 – Reduce vascular risk factors: smoking, high blood pressure, high cholesterol, lack of exercise, excess weight
- E – Evaluation of organ involvement: proteinuria (urine dipstick), differential blood count (leukocytes), etc.
Important sun protection
Sunlight (especially UVA rays) can trigger flare-ups or worsen symptoms.
The Federal Office of Public Health (FOPH) recommends avoiding the sun between 11 AM and 3 PM, as UV radiation is most intense at that time.
Another simple rule of thumb: if your shadow is shorter than your height, you should avoid the sun.
- Stay indoors or in the shade and avoid direct sun! Clouds let some of the harmful UVA radiation through.
- Wear sun-protective clothing. Special UVA-protective functional clothing is available. Cotton lets about 40% of UVA rays through. The darker the clothing, the more it absorbs UVA rays and the better it protects. Wear a hat. Wear sunglasses (the eyes of many people affected by lupus are sensitive to light).
- Apply sunscreen: 1. Use enough (3–4 tbsp for the whole body) 2. With a high protection factor 3. About 30 minutes before sun exposure 4. Frequently (at least every two hours, more often when swimming or sweating).
Sun exposure not only exacerbates skin problems, but can also worsen the condition of internal organs, as sunlight can increase lupus-specific antibodies (type Ro/SSA or SSA[RO] antibodies), which can lead to a lupus flare-up.
Sun protection is therefore important! See the following effective measures.
Sun and UV rays
Water, sand and snow reflect the sun, which exposes us even more to UV radiation.
Water, sand and snow can intensify UV radiation because they reflect it.
Snow significantly increases the UV index and water reflects UV radiation. Even in the shade, you are not fully protected from UV radiation. In addition, UV radiation increases with altitude. Sun protection is therefore particularly important in the mountains, especially in winter.
Vitamin D prophylaxis
Vitamin D as tablets or drops and vitamin D‑rich foods
Vitamin D is produced by sunlight exposure of the skin. Because people affected by lupus must avoid the sun, vitamin D levels can quickly become too low.
A vitamin D deficiency leads to osteopenia and osteoporosis in adults. A low vitamin D level is also a risk factor for autoimmune diseases. The lower the vitamin D level, the higher the disease activity. This can be a vicious circle for people affected by lupus. In addition, vitamin D requirements are increased when taking glucocorticoids (cortisone).
Vitamin D‑rich foods include, for example, fatty fish (prefer smaller fish), eggs, mushrooms, avocado and margarine fortified with vitamin D.
Pacing as a strategy
Fatigue and energy management
A major problem for people affected by lupus is fatigue, i.e. chronic tiredness and rapid exhaustion.
Severe exhaustion, so-called crashes, should be avoided. A helpful strategy is pacing.
Plan your everyday life carefully. Do not fill it with too many activities. Breaks are part of this planning. Breaks are important so that fatigue does not worsen over the course of the day.
Regardless of which strategies you use to manage your energy, for example an energy diary or an alarm for rest breaks, it is important to learn pacing. Do not exceed your individual limit.
You will find that you can still do and try a lot. You know that a rest break is planned after exertion.
It takes time to get used to pacing. It is not only about developing suitable strategies. It requires a change in mindset. Taking regular rest breaks is not wrong. It is important for your body.
Our society is strongly performance-oriented. First, it takes an understanding and respectful view of pacing and your own limits. Then it also takes understanding in your close surroundings.
In the end, you and those close to you will benefit when you learn to use your energy more sustainably. Your energy should last for the whole day, for the next day and for all the days after that.