Treatment and prevention
What do those affected need?
Any medication-based treatment must be tailored to the individual course of the disease.
Those affected need doctors who are familiar with lupus and who take them seriously. A relationship on equal footing between healthcare professional and patient is of great importance.
What do those 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, the doctor and those affected by lupus each have their own responsibilities.
There are areas for which the doctor is responsible: laboratory tests, medical assessments, keeping an eye on the latest research. Then there are areas for which people affected by lupus are responsible themselves: lifestyle, adherence to therapy (compliance), taking medication. However, there are also areas that doctors and people affected by lupus can only address together.
In consultation with their treating doctor, those affected should find out which therapy is most suitable for them and offers the greatest possible benefit. Many factors play a role, including personal ones (family situation, autonomy, mobility, motivation, values, etc.).
We recommend a comprehensive assessment by a lupus specialist.
People affected by lupus and their doctor should define a therapy goal. The therapy goal is re-analysed at every consultation; if necessary, the therapy and the therapy goal are adapted to the course of lupus. It is important that lupus patients are included in the 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. However, lupus is also psychologically burdensome: visible (malar rash) and invisible symptoms, lack of understanding from those around you, strain at work.
The more precisely you describe these problems to your doctor, the better he or she 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 doctor 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, 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 continuously reviewed in line with individual symptoms and findings and the respective course of the disease. Regular doctor’s visits are essential to adjust the therapy.
A trusting relationship with the doctor is very important, as 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 hardly known. Because the disease is mostly invisible, symptoms are often ignored by those around the person affected. The condition is also complex. For this reason, it is not easy for many people affected to talk about their lupus.
Psychotherapy can support those affected in dealing with stressful aspects of the disease and improve psychological well-being. It must be prescribed by a doctor so that the health insurance company covers the costs. Please check with your health insurance provider for the exact conditions.
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 (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, 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 daily life and do not fill it with too many activities. Breaks are also part of this planning. They are very important so that fatigue does not worsen during the day.
Whatever strategies you use to manage your energy—e.g. an energy diary or an alarm for rest breaks—it is important to learn pacing. Do not exceed your individual limits.
You will see that you can still do and dare many things because 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. No, taking regular rest breaks is not a bad thing! It is important for your body!
Our society is performance-oriented. First, your own view of pacing, which respects your limits, must be understanding and kind. Then your close environment also needs to be convinced.
In the end, you and those close to you will benefit when you learn to use your energy more sustainably. It needs to last for the whole day, for the next day, and for all the days that follow.