Lupus Erythematosus

Different forms of Lupus erythematosus

What does lupus erythematosus mean?
Lupus comes from Latin and means wolf. It is related to the characteristic
butterfly-shaped rash in the face that reminded the doctors of the white drawing on the muzzle of a wolf.
Erythematosus means red and refers to the red color of the skin rash.

1. Cutaneous lupus erythematosus (CLE) – the skin is inflamed and skin lesions occur. There are three forms of non-contagious cutaneous lupus, these are:
● Acute cutaneous lupus erythematosus (ACLE). Characteristic of ACLE is a butterfly-shaped, red skin abnormality in the face. It looks like you have been in the sun for too long. If you press the red spot, the redness disappears, but then the red spot just comes back. You can also get red spots on the rest of your body. Sunlight or lying under the sunbed creates more or worse red spots.
● Sub-acute cutaneous lupus erythematosus (SCLE). We see this form of cutaneous lupus in two ways: as red rings on the skin or as a red, thickened, flaking spot on the skin that is sharply marked off. The spots are found on skin that is exposed to sunlight, such as forearms, shoulders and neck. Ultraviolet light is bad for the condition and if you are in the sun or under the sun bed, the complaints usually get worse. There are usually no complaints in the face of sub-acute cutaneous lupus.
● Chronic cutaneous lupus erythematosus (CCLE) or chronic discoid lupus erythematosus (DLE). The oval spots on the skin look red, scaly and thickened. These spots are mainly on the hairy scalp or face, but they can also occur on the rest of the body (arms, legs, trunk). The oval spots can cause scarring and pigment changes.

2. Systemic lupus erythematosus (SLE). Systemic means that many organs in the body can be affected. The systemic form (SLE) can be associated with inflammations in various organs, for example lungs, heart or kidneys; there are also general symptoms such as joint pain, muscle pain, fatigue, lack of energy, fever and weight loss. Ultraviolet light can lead to an increase in skin lesions but also to the prevention or worsening of other symptoms of the systemic lupus, such as fever or joint complaints.

3. Drug induced lupus erythematosus (DILE). This form of lupus is caused by the use of certain drugs or lupus-like complaints after an allergic reaction to medication. The symptoms disappear if you stop taking this drug. Most people who get this condition are between 50 and 70 years old. People in this age group more often use drugs that can cause this form of lupus.

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Complaints with lupus erythematosus

1. Cutaneous lupus erythematosus (CLE)
Cutaneous lupus erythematosus (CLE) is a chronic condition and therefore no longer prevalent. The disease can calm down, but sometimes it may also flare up again. In this form of lupus erythematosus, the skin is inflamed in one place, but it can also spread over almost your entire body and there is serious skin rash. The skin rash can even leave scars. Symptoms:
• your skin is red and sometimes thick at one or more places, but usually it does not itch.
• the inflamed spots on the skin are usually exposed to sunlight.
• your complaints will get worse if you are lying in the sun or under the sunbed.
• if the spots disappear, scars sometimes remain or your skin becomes discolored. It can also develop into systemic lupus erythematosus (SLE).
Acute cutaneous lupus erythematosus (ACLE). Acute cutaneous lupus erythematosus does not cause scars, but your skin may discolour. It can also develop into systemic lupus erythematosus (SLE).
Sub-acute cutaneous lupus erythematosus (SCLE). In the case of subacute cutaneous lupus, there are usually no complaints in the face, scars or itching, but your skin may discolour dark or lighter. It can also develop into systemic lupus erythematosus (SLE).
Chronic cutaneous lupus erythematosus (CCLE) or chronic discoid lupus erythematosus (DLE). The oval patches can cause scarring and dark or slight pigment changes, but usually do not cause pain or itching. Your hair may fall out in places where you have the condition and if there are scars, the hair will not grow back to those spots. It can also develop into systemic lupus erythematosus (SLE).

If you have skin lesions for years, there is a chance that they become malignant. It is therefore important that you go to your doctor or specialist if you notice that a longer existing skin abnormality changes in size, shape or color.

2. Systemic lupus erythematosus (SLE)
Systemic lupus erythematosus (SLE) is a chronic condition. It is an autoimmune disease, which gives you auto-antibodies in your blood. This allows you to get inflammation anywhere in your body. The disease can be quiet, but it can also flare up again.
With systemic lupus erythematosus skin lesions occur in almost every patient. The most common problems with these skin defects:
• skin and mucous membranes. A thickened skin and red spots, itching, sun allergy, a butterfly-shaped red skin abnormality on the cheeks, nose and back, scars, mouth sores, punctiform bleeds and hair loss.
• the kidneys. Renal or kidney inflammation (nephritis) is one of the common and most serious manifestations of lupus. With early detection of kidney inflammation it can generally be treated well. Your urine and blood should be regularly examined and your blood pressure measured to detect inflammation of your kidneys, as you will usually not notice much if your kidneys are inflamed. But renal or kidney inflammation could go undetected and then can lead to renal failure and dialysis. You can help prevent these serious outcomes by seeking treatment at the first signs of kidney disease. These signs include: • High blood pressure • Swollen feet and hands • Puffiness around your eyes • Changes in urination (blood or foam in the urine, going to the bathroom more often at night, pain or trouble urinating)
• the lungs. Coughing every time, pain with deep sighing, shortness of breath or fever can indicate a: pneumonia, inflammation of the lung membrane (pleuritis) or blood clot in the pulmonary vessels (pulmonary embolism).
• brain and nervous system. For example, a clot in the blood vessels of the brain (speech disorders, paralysis, a crooked mouth and less touch in your fingertips), an inflammation of the vessels in the brain (headache, epileptic seizures, sadness, memory disorders and hallucinations), an inflammation of the nerves or the spinal cord (loss of strength and tingling).
• blood. A shortage of red blood cells can lead to: anemia, being tired quickly, your condition deteriorates, you can often feel cold. In case of a shortage of white blood cells: greater chance of infections and less rapid healing of inflammations and small wounds. When there is a shortage of platelets: a greater risk of bleeding and major bruising or small red spots on your skin.
In the case of antiphospholipid syndrome (APS) there is an increased risk of the formation of clots in the blood vessels. This can cause thrombosis or a pulmonary embolism, but also a stroke and arteriosclerosis. Accelerated atherosclerosis (clogging of the arteries) can develop in young women and could also lead to heart attacks, heart failure, and strokes. You have an increased risk if you have antibodies, the so-called antiphospholipid antibodies, in your blood. These antibodies can also increase the risk of miscarriage, pregnancy poisoning or a shortage of platelets. You will receive anti-coagulants and aspirin from your doctor if diagnosed with APS.
With the Raynaud phenomenon, a blood vessel in your fingers or toes can really be closed, a wound can occur at that location and the tissue can die off in your finger or toe (necrosis).
• joint complaints. You can suffer from joint pain (arthralgia) and joint inflammation (arthritis).
• heart problems. An inflammation of the pericardium (pericarditis, inflammation of the outer peritoneum and fluid accumulation around the heart) is most common. But also inflammation of the heart muscle (myocarditis), of the heart valves (endocarditis) and of the vessels of the heart (chest pain, shortness of breath, fever, palpitations, headache, migraine) is possible.
• getting a fever.

3. Drug induced lupus erythematosus (DILE)
The drug induced lupus erythematosus (DILE) is not a chronic condition, because it goes away, when you stop taking the drugs that cause it.
You may have a fever, suffer from joint or muscle pain and have thick, warm and less well-moved inflamed joints. There is almost no question of joint damage. You may also experience chest pain or shortness of breath, possibly inflamed heart tissue (pericarditis) or inflamed lung membrane (pleuritis). You may also experience skin abnormalities, as with cutaneous or systemic lupus erythematosus, but there are no sores in the mouth, hair loss or disc-like patches on your skin. Furthermore, you can get the same symptoms as those associated with systemic lupus erythematosus, but these complaints are much milder.

People with lupus erythematosus can also get other rheumatic diseases, such as scleroderma or myositis.

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Diagnosis in lupus erythematosus

Your doctor will base your diagnosis on a combination of the medical history, his findings and additional test results.

Anamneses
At the first visit, the doctor asks you a number of questions to get a good picture of your condition. You can think of the following questions:
– When did your complaints start?
– Can you describe your complaints?
– How are your working conditions?
– What medication do you use?
– Do rheumatic diseases occur in your family?
– What is your medical history?
– Are you under the treatment of other specialists and for what?

Symptoms and physical examination 
Lupus erythematosus can be hard to detect because it is a complex disease that has many symptoms. During the physical examination the doctor will pay attention to skin abnormalities on your face, arms and fingers, sores in your mouth (sores), pain and swelling of your joints, a noise on your heart and lungs and enlargement of liver and spleen. The first symptoms may not be specific to lupus. These can include fever, fatigue, weight loss, blood clots, hair loss in spots or around the hairline, heartburn, stomach pain and poor circulation to the fingers and toes. The American College of Rheumatology (ACR) made a list of symptoms to be used as a guide to decide if a patient with symptoms has lupus.
• Rashes: – butterfly-shaped rash over the cheeks (malar rash) – red rash with raised round or oval patches (discoid rash) – rash on skin exposed to the sun.
• Mouth sores: sores in the mouth or nose. They may last from a few days to more than a month.
• Arthritis: tenderness and swelling lasting for a few weeks in two or more joints.
• Lung or heart inflammation: swelling of the tissue lining the lungs (pleuritis) or the heart (pericarditis), causing chest pain when you breathe deeply.
• Kidney problem: blood or protein in the urine may suggest poor kidney function.
• Neurologic problems: seizures, strokes, or psychosis (a mental health problem).
If there are complaints, the doctor will do blood and urine tests and if necessary have an X-ray or a biopsy taken.

Blood tests
If your doctor suspects lupus based on your symptoms, a series of blood tests will be done in order to confirm the diagnosis. The doctor will look at abnormalities in the blood tests: – low blood cell counts (anemia, low amount of white blood cells or low amount of platelets) – a positive anti-nuclear antibody (ANA) result (antibodies cause the immune system to begin attacking the body itself and are found in nearly all lupus patients) – certain abnormal antibodies, such as anti-double-strand DNA (anti-dsDNA), anti-Smith (anti-Sm), antiphospholipid antibodies or complement factors.
Your doctor will take blood samples to see if there are enough red and white blood cells and platelets in your blood, if your kidneys work normally, if you have anti-nuclear antibodies (ANA) in your blood (directed against the body’s own cells or tissues in your blood), if the sedimentation and/or the CRP value in your blood are increased, if your liver values are normal and if your muscles are not inflamed.
• Antinuclear antibodies (ANA). The most important blood screening test is ANA. ANA are antibodies against parts of the own cell nucleus and are also called antinuclear factor (ANF). ANA is found in the blood of almost every patient with SLE (systemic lupus erythematosus). In the normal situation, the immune system produces antibodies against foreign proteins (antigens), but not against human proteins. In some situations, such as certain autoimmune diseases, antibodies to human proteins are produced. These are then often present in an increased amount. Antinuclear antibodies can be found in patients with autoimmune diseases, cancer and infections. The test is mainly used for the diagnosis of certain autoimmune diseases, such as: systemic lupus erythematosus (SLE), Sjögren’s syndrome, scleroderma, mixed connective tissue disease (MCTD), polymyositis, dermatomyositis, autoimmune hepatitis and drug-induced lupus (DILE). If the ANA test is negative, then you do not have lupus. If the ANA test is positive, you may have lupus and more tests are needed. A positive ANA test, however, is not in itself proof of the existence of SLE, because the test can also be positive in other diseases and can even be weakly positive in healthy people.
• Anti-ds DNA (anti-double-strand DNA or anti-dsDNA) antibodies. Anti-double strand DNA antibodies are auto-antibodies that target the genetic material (DNA) in the cell. These antibodies are found almost exclusively in patients with SLE (systemic lupus erythematosus). This test is often repeated because the amount of antibodies against the double-strand DNA can help the doctor to determine the degree of disease activity.
• Anti-Sm (anti-Smith or anti-Sm) antibodies. Anti-Sm antibodies are named after the first patient in whose blood they have been detected. These autoantibodies are found almost exclusively in patients with SLE and often help to confirm the diagnosis.
• Antiphospholipid antibodies. Antiphospholipid antibodies are antibodies against the cell’s shell. These are permanently present. The increased presence of antiphospholipid antibodies indicates an increased risk of certain complications such as a miscarriage or blood clots.
• Complement factors are used in cleaning up antibody complexes in the blood. A complement factor is a chain of proteins that stimulates other immune reactions under the influence of foreign substances and can directly destroy some foreign substances. In SLE, the complement factor can be reduced because it is heavily consumed when clearing the antibody complexes in the blood. Doctors can measure levels of certain complement proteins (a part of the immune system) in the blood to help detect the disease and monitor its progress.

Urine test
By examining the proteins and blood cells in the urine, the doctor has your kidneys examined. Involvement of the kidneys is the most serious manifestation of lupus.

Other research
In the case of heart complaints a heart film (ECG) or an echocardiography can be made. Echocardiography is a painless test that uses sound waves to create moving pictures of your heart. The pictures show the size and shape of your heart.
An x-ray of the lungs can be taken to see if there is swelling of the tissue lining the lungs.
Possibly it may be necessary to take biopsy of your skin or kidney for the diagnosis. The doctor will have a small piece of tissue removed with a hollow needle and examined.

Diagnosis of systemic lupus erythematosus (SLE)
To be able to establish with certainty the diagnosis of systemic lupus erythematosus, you must have at least 4 of the following symptoms:
• Thickened red spots on your skin
• Hypersensitivity to sunlight
• Sores in your mouth
• Joint inflammation
• Inflammation of the pulmonary membrane or heart membrane
• Kidney inflammation
• Nervous system disorders
• Abnormalities in your blood, shortage of red and white blood cells and platelets
• Presence of certain antibodies or increased ANA levels in your blood
• Butterfly-shaped skin lesions in your face.
If you suffer from fewer than 4 complaints, the doctor will call your illness SLE-like. This means that your complaints are similar to those of systemic lupus erythematosus, but that the diagnosis can not be clearly stated.

Diagnosis drug induced lupus erythematodes (Dile)
In case of suspected drug induced lupus erythematosus, the doctor will of course first look at the drugs you use. This form of lupus can be caused by statins (cholesterol-lowering drugs) and biologic DMARDs. The doctor will see what drug is involved and if you stop and the symptoms disappear, then it is sure that you have drug induced lupus erythematosus. The complaints usually disappear, after stopping the use of a drug, within a few weeks to a maximum of six months. You will then receive another drug to be used for your complaints. If your doctor still doubts the diagnosis, you can have a blood test and he will look for antibodies in your blood.

Treatment with lupus erythematosus

Lupus in its two forms Cutaneous lupus erythematosus (CLE) and Systemic lupus erythematosus (SLE) is a chronic disease. The treatment objective is to induce remission. Treatment depends on the type of symptoms you have and how serious they are. Drugs can reduce your symptoms.
Drug induced lupus erythematosus (DILE) occurs in response to the use of certain drugs. It is therefore very important that you stop taking the drug that causes the symptoms, in consultation with your doctor.

Drug treatment
Drugs without a prescription
• For the pain you can get a simple painkiller with the active ingredient paracetamol without a prescription. Paracetamol helps against pain and fever, does not cause stomach problems, usually does not cause side effects and can be easily combined with other medications.
• An NSAID, an anti-inflammatory analgesic in a lower dose. The abbreviation NSAID stands for Non-Steroidal Anti-Inflammatory Drugs. These painkillers inhibit inflammation.

Do you have physical complaints? Always go to your doctor or specialist for a proper diagnosis and proper treatment.

Drugs on prescription
This is provided by your doctor or rheumatologist or internist.
Treatment for lupus erythematosus in its two forms Cutaneous lupus erythematosus (CLE) and Systemic lupus erythematosus (SLE):
• An NSAID, an anti-inflammatory analgesic, such as naproxen (Naprosyn, Aleve), ibuprofen (Motrin, Advil), meloxicam or indomethacin. The abbreviation NSAID stands for Non-Steroidal Anti-Inflammatory Drugs. These are drugs that are effective against inflammation of the joints and of the heart and lung linings, pain, stiffness and fever, but do not contain corticosteroids (steroids). They do not prevent joint damage. There is no proof that any one NSAID is better than others. Your doctor will prescribe these prescription drugs with a higher dose of the active substance. High doses of short‐acting NSAIDs give the fastest relief of symptoms. Given in the correct dose and duration, these drugs give great relief for most patients. The NSAIDs may cause stomach upset, ulcers or diarrhea, but they are well tolerated by most people when used for the short term. Some people cannot take NSAIDs because of health conditions such as ulcer disease, impaired kidney function or the use of blood thinners and blood pressure reducers. The NSAIDs can also cause serious side-effects like a gastric (stomach) bleeding or kidney damage. Some NSAIDs can cause severe hypersensitivity reactions in lupus erythematosus. That is why your doctor will consider carefully which of the painkillers you can safely use. Anti-inflammatory painkillers are all effective against pain and inflammation. However, one medicine may work better for you than another. This is because each person responds differently to medication and because every anti-inflammatory analgesic works just a little differently in the body. Your doctor will choose an NSAID for you that best fits your complaints and your state of health. Always check with your doctor before taking any medications that are over the counter (without a prescription) for your lupus.
• A corticosteroid (an artificial adrenal cortex hormone) is a drug that resembles the natural hormone that the body produces in the adrenal cortex. They are anti-inflammatory drugs that suppress the immune response in the body and inflammation. A corticosteroid drug can be quickly effective for a joint swelling that is localized (not widespread) by an injection or shot into the effected joint or tendon sheath (the membrane around a tendon). Patients with serious or life-threatening problems such as kidney inflammation, lung or heart involvement and central nervous system symptoms need more ‘aggressive‘ (stronger) treatment. This may include high-dose corticosteroids such as prednisone (Deltasone and others). Although they may be effective, a corticosteroid drug taken by mouth is not advised. This is because the high dose required will lead to many side-effects.
• Immune suppressants. Patients with serious or life-threatening problems such as kidney inflammation, lung or heart involvement and central nervous system symptoms need more ‘aggressive (stronger) treatment. This may include drugs that suppress the immune system. Immune suppressants include azathioprine (Imuran), cyclophosphamide (Cytoxan) and cyclosporine (Neoral, Sandimmune). Recently mycophenolate mofetil has been used to treat severe kidney disease in lupus nephritis.
The chance of (serious) infections is increased by the suppression of the immune system. It can also damage the kidneys and liver and can reduce the production of blood cells in the bone marrow. To detect these side-effects, the blood is checked regularly. Other side-effects ocurring can be: nausea, vomiting, skin rash, fever and with TNF-a blockers: sudden (acute) skin reaction at the site of the infusion, gastrointestinal complaints, headache and liver dysfunction.
• Combination treatment. A doctor may combine a few drugs to control the lupus and prevent tissue damage. Of course each treatment has risks and benefits. Most immune-suppressing drugs may cause side-effects and require close monitoring. Side-effects of immune-suppressing drugs may include a raised risk of infections as well as nausea, vomiting, hair loss, diarrhea, high blood pressure, and osteoporosis (weak bones).
• A synthetic DMARD (Disease-Modifying Anti Rheumatic Drug). The DMARD is a slow-acting rheumatoid inhibitor and for example Methotrexate, Sulfasalazine (Azulfidine), Gold, Hydroxychloroquine, Azathioprine, Leflunomide and Ciclosporin may be prescribed. A DMARD has different mechanisms of action and this drug can relieve symptoms and may prevent damage to the joints. When using a DMARD at an early stage of your condition, your joints will be less damaged by the inflammations. The DMARD and antimalarial drug hydroxychloroquine (Plaquenil) is recommended in every patient with lupus. Hydroxychloroquine was used in the past to prevent and treat malaria and was found to be effective for lupus related arthritis, fatigue, rashes and mouth sores.
In addition to the DMARD, the specialist can also prescribe an NSAID or a corticosteroid (for example prednisone) or a combination of the rheumatic inhibitors to directly combat the pain and to tackle the inflammation more effectively. Not everyone responds well to the rheumatic inhibitors. In some people, the medicines do not help enough. Other people suffer from side-effects.
If you have systemic lupus erythematosus (SLE) and treatment with DMARDs is insufficient, your doctor may prescribe biologic rheumatic inhibitors under certain conditions. First, the doctor will check if you do not have infections, tuberculosis, heart failure or a malignant disease. These diseases can in fact be exacerbated by treatment with a biologic rheumatic inhibitor and must therefore be treated first.
• A biologic DMARD (biologic Disease Modifying Anti Rheumatic Drug), such as TNF alpha inhibitors, interleukin inhibitors, B cell inhibitors and T cell inhibitors. A biologic is a drug that can affect your immune system and that consists partly or entirely of animal or human protein. The drugs can block the chemical signals of the immune system, leading to inflammation and joint/tissue damage. They inhibit the substances that cause the inflammation in your body. This prevents damage to the joints and makes you feel better. If you are healthy, the immune system itself produces enough antibodies to defend itself against pathogens (viruses and bacteria). This balance is disrupted in people with chronic inflammatory diseases. The immune system reacts actively against ‘own’ body cells. A biologic can restore that balance. In 2011, the FDA approved a biologic, belimumab (Benlysta), for the treatment of active SLE in adult patients. Benlysta has shown to be effective in mild forms of lupus.
The most important side-effect of these drugs is that they make you more susceptible to infections, such as a normal cold. A biologic DMARD is added when treatment with a traditional synthetic DMARD or an anti-inflammatory drug, such as methotrexate or naproxen, does not appear to work sufficiently. Patients usually use these drugs with methotrexate, because this combination of drugs is more effective.
• A biosimilar. A biosimilar drug is a drug that is developed to be highly similar and clinically equivalent to an existing biologic. A biosimilar drug contains a version of an active substance of an already approved biologic drug (the ‘reference drug’ or ‘originator drug’). Similarity to the reference biologic in terms of quality, structural characteristics, biological activity, safety and efficacy must be established, so that there are no clinically meaningful differences from the biologic in terms of quality, safety and efficacy. Research has shown that the biosimilar is just as effective as the original biologic inhibitor in the treatment of arthritis.
Biosimilar drugs are not the same as generic drugs, which contain simpler chemical structures and are identical, in terms of molecular structure, to their reference drugs.

Treatment for other complaints
• Skin abnormalities. In the case of severe skin abnormalities, your doctor will give you an ointment with corticosteroids, sometimes in combination with immune-suppressing medicines such as prednisone and azathioprine.
• Sores in the mouth. The doctor will prescribe lidocaine or sucralfate. Lidocaine makes the skin and mucous membranes numb.
• Thrombosis and pulmonary embolism. The doctor may prescribe blood thinning medicines such as phenprocoumon, acenocoumarol or acetylsalicylic acid.
• Heart/lungs/kidneys. You will be prescribed corticosteroid and antidepressant drugs such as azathioprine, cyclophosphamide, a high dose of prednisone or mycophenolate mofetil.
• Brain/nervous system. Your doctor will prescribe strong immune suppressant medications against the inflammation of the nerves or blood vessels in the brain.
• Raynaud’s Phenomenon. In case of severe symptoms your doctor may prescribe nifedipine, prazosin or ketanserine. These drugs dilate blood vessels, which improves the blood circulation.
• Fever. Your doctor will usually prescribe prednisone and/or a DMARD in case of sudden high fever.
• Fatigue. Severe fatigue can mean that the disease has become more active. Hydroxychloroquine or low dose prednisone can reduce severe fatigue.

Use of drugs and adherence

• It is important that you take the drugs as prescribed. In order to get your illness under control, it is very important that you take your drugs on a regular basis every day. If you do not, there is no good concentration of the drug in your blood and therefore the drug will work less well.
• Do you have trouble remembering when and how many of your drugs you should take on a daily basis and at what time of the day? Then buy a drug dispenser, in which you can sort your drugs per day.
• Do you have difficulty or objection to taking the drug prescribed to you, for example because of possible side-effects? Then that can lead to you no longer taking the drug regularly. Discuss this with your doctor!

Deterioration of your illness and/or complications
The doctor will look at:
• The dosage and amount of drugs you use.
• Switching to another drug in the same type or a completely new type of drug.
• Combining different drugs at the same time.

Your doctor can tell you
• whether the drug can work for you.
• how you can best use the drug.
• how much and how often you can use the drug.
• how you can best reduce the drug.

You should always tell your doctor or specialist
• if you use other drugs (bought or prescribed by another doctor).
• if you have another medical condition.
• whether you will be operated on soon.
• if you have previously been prescribed an anti-inflammatory analgesic that has caused side-effects.
• whether you want to become pregnant or are pregnant.
• if you are breast-feeding.
This is important because your doctor or specialist has to make a careful choice between different drugs.

Side-effects
• All drugs may have side-effects when used, so ask your doctor or pharmacist what side-effects you can expect or read the leaflet.

Reduce or stop
• If you stop using a drug yourself or reduce the number of drugs yourself, your symptoms may worsen. Always consult your doctor or specialist first if you want to use less drugs or want to stop.

Alternative treatments
There are many types of alternative treatments. This refers to all treatments that fall outside normal scientific medical care. No scientific evidence has been provided for the operation of these treatments. The alternative treatments are also called ‘complementary‘ because they can supplement the regular medical treatment by your doctor.
Many people choose an alternative treatment in addition to their regular medical treatment. They hope that this helps extra against their complaints or better helps to deal with the complaints.

Can an alternative treatment be a replacement for your regular medical treatment?
No, if you opt for an alternative treatment method, it is always a supplement to your regular medical treatment. You should not stop your regular treatment, because otherwise you run unnecessary health risks. Always consult your attending doctor before you start an alternative treatment.

What alternative treatments are there for example?
There are many different alternative treatment methods available, which can also be combined. Some examples are:
• Chinese medicine (acupuncture, pressure point massage, nutrition and tai chi).
• homeopathy (products made from plants and minerals).
• Bowen therapy.
• Ayurveda.
• Bach flower treatment.
• shiatsu, foot-sole and classic massage.
• Touch for Health.
• Reiki.
• dietary supplements.

What do you have to pay attention to?
• Many alternative treatments have not shown that they actually work. If you choose to try alternative treatment, make sure that your complaints do not increase. Stop an alternative treatment as soon as your symptoms increase.
• Always consider first why you want to follow an alternative treatment.
• Prepare yourself by looking up and reading information about the alternative treatment. Consult with your attending doctor, because certain complaints may be reduced by some alternative treatment methods.
• Determine yourself in which alternative method you trust for the relief of your complaints and whether you want to start.

What can you do best when choosing an alternative treatment?
• Always consult your doctor about the alternative treatment method you want to follow.
• Consult with your attending doctor and with the alternative therapist if they want to discuss your treatment with each other.
• Choose an alternative therapist who has followed a recognized vocational training and is affiliated to a professional organization.
• Ask your alternative therapist in advance about the purpose, duration, costs and risks of the treatment. How much money you spend depends on which treatment you choose and how long it takes.
• Do not stop your regular medical treatment, as this may worsen your symptoms.
• Weigh during treatment whether you want to continue or stop if your symptoms get worse, if you do not notice any effect of the alternative treatment or if you get side-effects.

Why is your food important?

• Healthy nutrition is important to get the vitamins and minerals and other nutrients that your body needs.
• Obesity creates risks for your health and disease progression. In the case of arthritis and obesity, for example, obesity plays an important role in overburdening and osteoarthritis in the knees, hips and ankles. The pressure on your joints is then simply too great. Healthy eating and exercise (exercising a sport and active in the home and outdoors) can help to reduce or prevent excess weight.
• A healthy diet is always important and the dietitian can support you with the right dietary advice.

What is a healthy diet?
With a healthy diet your body gets the right amount of good nutrients, which it needs. You eat the quantities that your body needs. The dietitian can support you with the right nutritional advice.
The 5 courses to choose from are:
• Vegetables and fruit
• Bread, cereal products and potatoes
• Fish, legumes, meat, egg, nuts and dairy
• Lubrication and preparation fats
• Drinks.

Where can you get advice for a healthy diet?
• You can request advice from your doctor or a dietitian. The doctor can refer you to a dietitian. Some diets may possibly help against your symptoms. Consult with your doctor or dietitian if you want to try a certain diet. And make sure that you do not omit important foods from your daily diet.

What can you do with a painful or dry mouth?
Sometimes you can suffer from a dry or painful mouth for various reasons, also due to your illness. Tips:
• by chewing (for example piece of cucumber, sugar-free candy or chewing gum) and sucking (ice cube) the salivary glands are stimulated to produce saliva.
• good oral care is important: good tooth brushing, flossing and the use of mouthwash.
• rinse your mouth regularly, drink small amounts of water and use a mouth sprayer if necessary.
• let hot drinks cool down first.
• use ice or cold dishes, because the cold numbs the pain.
• do not use sharp herbs and spices, fruit juice, carbonated soft drinks, alcoholic beverages, very salty foods and sour food.
• food with hard crusts, nuts, bones and bones can cause injuries.
• use soup, gravy or sauce with the hot meal to make the food smoother.
• spreadable cheese, spreadable paté or salad, jam or honey on bread, porridge, drinking breakfast and custard, for example, swallows easier than dry spreads.
• if you need to use ground or liquid food, you can use a mixer to grind your meal with some extra moisture.

In some forms of arthritis or use of certain drugs intestinal complaints can occur. The intestinal complaints can arise from the influence of certain drugs on food intake. Conversely, the food you eat can have an effect on the way your drugs work.

Dietary supplements, fish fatty acids, glucosamine and vitamin D?
• Dietary supplements are available as pills, powders, drops, capsules or drinks and are intended as a supplement to inadequate daily nutrition. They contain vitamins, minerals or bio-active substances. These synthetic or isolated vitamins, minerals or bio-active substances have the same effect as the vitamins and minerals that are already naturally in your food and drink.
Many people choose an additional supplement, in addition to their daily diet. The users of dietary supplements indicate that they experience positive effects of the use of certain herbs, vitamins and minerals. The body absorbs the nutrients in pills more easily than the nutrients in food. But if you eat healthy and varied, you do not need additional nutritional supplements, because you already get enough nutrients, minerals and vitamins. Always report to your doctor and pharmacist that you are using dietary supplements.
• Fish fatty acids appear to have a mild anti-inflammatory effect with a high intake. Research has been done especially in rheumatoid arthritis. The advice is to eat oily fish twice a week.
• Glucosamine can act as a mild painkiller for osteoarthritis in the knee, but does not stop arthritis.
• Our body naturally makes vitamin D under the influence of outdoor sunlight. Vitamin D may have a beneficial effect in inflammatory arthritis, but that has not yet been proven sufficiently. People with Lupus erythematosus get vitamin D prescribed as they are not often outside, because sun exposure can lead to lupus flares and skin problems. Vitamine D is given with calcium tablets to ensure a good intake in the body, when you have osteoporosis or osteoarthritis.

Pregnancy and lupus erythematosus

Tell your treating doctor in good time that you want children or that you are pregnant. If possible, carefully plan your pregnancy. With your doctor’s guidance, time your pregnancy for when your lupus activity is low. While pregnant you should avoid drugs that can harm your baby, such as cyclophosphamide, cyclosporine, and mycophenolate mofetil. If you must take any of these medicines or your disease is very active, use birth control.
Rheumatologists have long been concerned that the female hormone estrogen or treatment with estrogen may cause or worsen lupus. But recent research has showed that estrogen therapy can trigger some mild or moderate flares of lupus, but does not cause symptoms to get much worse. Yet, estrogen can raise the risk of blood clots. Thus, you should not take estrogen if your blood tests show antiphospholipid antibodies (meaning you already have a high risk of blood clots). The doctor then can take this into account during the treatment. Some rheumatic drugs affect your fertility or can be harmful to your unborn child.

Women with systemic lupus erythematosus (SLE) or cutaneous lupus erythematosus (CLE) have a small chance of 5% to pass on the disease to their unborn child. The risk of neonatal lupus is small, because the fetus is protected in the uterus by the placenta. However, there is a greater chance of miscarriages and pregnancy poisoning if you have the antiphospholipid syndrome (APS). To prevent problems in pregnancy, you can be given blood thinners.

Usually the disease does not get worse during pregnancy, but carefully plan your pregnancies, because lupus can flare during pregnancy and can affect its outcome. In the maternity period and the months thereafter there is a small chance that this will happen to you.

Two possible consequences for the newborn baby:
• a lupus-like skin rash. This is not serious. The nodules and flaky spots appear two to six weeks after birth. After three months the skin rash is gone again.
• a congenital heart block. This is a congenital malfunction in the stimulus conduction within the heart. The babies have a very slow heartbeat and swollen heart chambers. About half of the children with neonatal lupus have such a heart block. The doctors try to detect a heart block early on with a heart echo. They can then treat the fetus with drugs before birth. Immediately after birth, the surgeon will introduce a pacemaker to many children with a congenital heart block. This happens when the heart rate is very low.

Living with lupus erythematosus

Advice, that may help you:
• Get involved in your care. Learn as much as you can about lupus, your drugs and what kind of progress you can expect. Take all your drugs as your doctor prescribes every day. Let your doctor keep track of your disease and change your treatment as needed. Maintain a good doctor-patient relationship.
• Stay active. Exercise helps keep joints flexible and may prevent heart disease and heart strokes. Switch off doing light to moderate exercise with times of rest every day.
• Lower other risk factors for heart disease, such as smoking, high blood pressure and high cholesterol.
• Avoid excess sun exposure. Sunlight can cause a lupus rash to flare and may even trigger a serious flare of the disease itself. When outdoors on a sunny day, wear protective clothing (long sleeves, a big-brimmed hat) and use lots of sunscreen.
• Form a support system around you. Support from family and friends can help you cope with this chronic and often unpredictable illness.
• Carefully plan your pregnancy. With your doctor’s guidance, time your pregnancy for when your lupus activity is low. While pregnant avoid drugs that can harm your baby, such as cyclophosphamide, cyclosporine, and mycophenolate mofetil. If you must take any of these medicines or your disease is very active, use birth control.

Patient Education Library
Systemic Lupus Erythematosus
https://www.ypo.education/rheumatology/systemic-lupus-erythematosus-t91/video/

Sources videos

Patient Education Library I Systemic Lupus Erythematosus I https://www.ypo.education/rheumatology/systemic-lupus-erythematosus-t91/video/
Manipal Hospital I How Lupus Attacks Immune System? I https://youtu.be/KaWBUgkd_oo
Osmosis I Systemic lupus erythematosus (SLE) – causes, symptoms, diagnosis & pathology I https://youtu.be/0junqD4BLH4
Osmosis I Lupus nephritis – causes, symptoms, diagnosis, treatment, pathology I https://youtu.be/HwzNQ4Oav00

More information

Lupus fact-sheet
Lupus-Fact-Sheet_UPDATED-4.2018
Source: https://www.lupusresearch.org/understanding-lupus/