If you have lupus, your mind is probably flooding with many questions. Lupus is a complex disease with no easy answers. It will alter your life and your reality in significant ways. You will encounter several physical and mental challenges. The people you live and work with may not understand the impact of the illness on your overall functioning. They may label you as a hypochondriac, lazy and unreliable. Lupus can mimic other diseases and presents itself differently for every patient. The symptoms can be vague and vary between people and therefore diagnosis can be difficult.
The comforting news is that you can get help and manage lupus with a combination of prescribed treatment and lifestyle adjustments.
Learn about the disease, ask questions, communicate with your doctor and other health care workers, and gather support from your family, friends and community.
What is Lupus?
Systemic Lupus Erythematosus (otherwise known as lupus) is an autoimmune disease, where the body’s immune system attacks the body’s own cells as if they were invaders. The antibodies produced by the immune system in lupus lead to inflammation and damage to body tissues, such as those in the joints, skin, kidneys, heart, lungs, blood vessels and the brain.
Although the definite cause of lupus is unknown, it is believed that the disease is triggered by a combination of genetics and environmental factors including:
- Certain medications and chemicals
- Viral and bacterial infections
- Exposure to UV light
- Dietary factors
- Stress and trauma
It is estimated that lupus affects over five million people worldwide. Over 90% of people with lupus are women, although men and children also present with the disease. Patients typically develop the disease between the ages of 14 and 45 years. Lupus is characterised by periods of flare-ups (when the disease is active) and periods of remission. Lupus is not an infection and it is not contagious. There is currently no cure for the disease although there are ways to manage its impact.
How Is Lupus Diagnosed?
Lupus is a difficult disease to diagnose as it mimics other diseases. Ideally, early diagnosis is important. However, according to recent research, it can take 4-6 years in some cases for doctors to make a definite diagnosis.
Lupus symptoms can be vague, unpredictable and variable, and may come and go. Symptoms do not have to occur at the same time. Contact your doctor for confirmation.
- Malar rash – a butterfly-shaped rash across your cheeks and nose
- Skin rash – raised red patches
- Joint and muscle pain, stiffness and swelling
- Photosensitivity – unusually strong reaction to sunlight, causing a rash or flare-up.
- Fingers and toes that turn white/blue when exposed to cold or stressful periods (Raynaud’s phenomenon)
- Hair loss
- Loss of appetite and weight loss
- Fatigue, weakness and lethargy
- Chest pain and shortness of breath
- Dry eyes
- Headaches, confusion, memory loss
- Mouth or nose ulcers – usually painless
- Neurological disorder – strokes, seizures and/or psychosis
- Kidney disorder – increased protein or clumps of red cells in urine
- Anaemia – caused by damaged red cells, low white cells or low platelet count
Most people with lupus will not experience all these symptoms and no two individuals seem to experience identical symptoms.
A combination of blood and urine tests, signs and symptoms and physical examination results leads to the diagnosis.
Blood and urine tests may include:
- Full blood count
- Erythrocytes sedimentation rate
- Kidney and liver assessment to assess how well your kidneys and liver are functioning
- Most patients with lupus have a positive antinuclear antibody (ANA) test. However, not everyone with a positive ANA has lupus because there are many reasons that the ANA may be positive (including chronic infections or inflammation, and age). The double-stranded DNA (anti-dsDNA) test together with other antibody tests are also used to help diagnose lupus. Remember that the antibody tests must be considered together with a person’s medical history, signs and symptoms.
The following tests may be suggested by your doctor if he or she suspects that lupus is affecting your lungs, heart or kidneys:
- Chest X-ray
- Echocardiogram of the heart
- Biopsy of the skin or kidney
Types of Lupus
Systemic Lupus Erythematosus (SLE)
SLE – otherwise referred to as ‘lupus’ – is the most common form of lupus. It is also the most serious kind as it can affect almost any organ or system of the body including the skin and joints, kidneys, lungs, heart, blood vessels and/or brain. SLE can be mild or severe and is characterised by periods of flare-ups (when the lupus is active) and periods of remission.
Cutaneous lupus erythematosus
This form of lupus is limited to the skin. A discoid rash is the most common which presents itself in the form of raised scaly, non-itchy, red rash, appearing like disks or circles. This is the same rash as SLE patients may experience. Cutaneous lupus can also cause many other types of rashes and lesions (sores) on the face, neck, or scalp, or in the mouth, nose or vagina. Additional symptoms may include hair loss and changes in the pigment (colour) of the skin.
Drug-induced lupus erythematosus
Drug-induced lupus is caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of SLE, however, it is usually a mild illness and rarely affects major organs.
The drugs most commonly connected with drug-induced lupus include:
Hydralazine—Treatment for high blood pressure or hypertension
Procainamide—Treatment for irregular heart rhythms
Isoniazid—Treatment for tuberculosis
Not everyone who takes these drugs will develop drug-induced lupus. Lupus-like symptoms usually disappear within six months after these medications are stopped.
Neonatal lupus is a rare, mild form of lupus. It affects babies of women who have lupus and is caused by antibodies from the mother acting upon the baby in the womb. The baby may have a skin rash, liver problems, or low blood cell counts at birth. However, these symptoms completely disappear after several months with no permanent effects. Some babies with neonatal lupus can also have a serious heart defect.
Childhood Lupus (cSLE)
- Childhood Lupus (cSLE) is a rare but serious condition.
- The average age in South Africa for cSLE is 12 years and the female to male ratio is 5:1.
- Adolescence is a dangerous time for all patients with lupus. There are many risks at this time, including non-compliance, recreational drug use, psychological issues and pregnancy.
- According to a recent study from Cape Town, the common presenting features in cSLE are arthritis, malar rash and renal involvement.
- In the South African setting, almost all children presented with fever, lymphadenopathy and weight loss, mimicking TB and HIV.
- Other presenting features in South African children included serositis and Raynaud’s phenomenon.
- All children with SLE should be referred to a paediatric rheumatologist, nephrologist or paediatric specialist with knowledge of cSLE, and a multidisciplinary approach to management is essential.
- Treatment options involve the use of high-dose immunosuppressive therapy to achieve disease stabilisation for the first 6-12 months. Long term medication may include intravenous cyclophosphamide or Mycophenolate (MMF). Azathioprine and methotrexate are other treatment options available.
Lupus in Men
Although lupus affects mostly women, men can also develop lupus. Lupus does not decrease a man’s levels of testosterone, ability to perform sexually, or the potential to become a father. However, certain medications, such as cyclophosphamide, can affect sperm counts. Discuss with your doctor before you begin to take any medication on how it may affect you.
Treatment in South Africa
Lupus is typically treated by rheumatologists who specialise in the diagnosis of autoimmune diseases. Lupus can affect nearly any organ or organ system of the body. Along with the rheumatologist, most people with lupus will see a number of different specialists depending on what particular area of the body it affects.
The team of doctors and specialists may include:
- Nephrologist (kidney specialist)
- Pulmonologist (lung specialist)
- Dermatologist (skin specialist)
- Neurologist (brain and nerve specialist)
- Occupational therapist
- Psychologist (emotional specialist)
- Psychiatrist (brain and mood specialist)
Lupus is treated with medication that suppresses the immune system, in addition to lifestyle changes.
Available treatment in South Africa include:
- Antimalarial drugs (such as hydroxychloroquine and chloroquine) are often used to treat joint pains, skin rashes, kidney disease, clotting problems and fatigue, and reduce lupus flares. The evidence for chloroquine’s good effects in lupus are so strong that it is recommended that all patients, including pregnant patients, use chloroquine unless there is a particularly good reason (such as a serious side effect) that it cannot be used.
- Non-steroidal anti-inflammatory drugs (NSAIDs) which reduce pain and stiffness. They, however, do not alter the course of the disease or the underlying immune process and have many side effects (such as stomach ulcers and stomach bleeding, high blood pressure and water retention causing swelling, increased risk of heart attacks and stroke, kidney injury, liver problems and meningitis. NSAIDs should be used in the lowest dose for the shortest time possible. Talk to your doctor if you need to use high doses every day.
- Corticosteroids (such as Prednisone) are very effective anti-inflammatory medications and are used for treating serious complications of lupus, such as those affecting the heart, lungs and nervous system. They have many severe side effects (weight gain, skin changes, increased risk of infections, thin bones, heart attack and stroke, diabetes, high blood pressure) and doctors try and use the lowest dose of steroids for the shortest time possible to avoid these problems.
- Immune suppressing drugs (such as methotrexate, azathioprine, mycophenolate, cyclophosphamide) suppress the immune system and are used when serious disease is present and steroids alone are not enough to control the disease.
Living and Managing Lupus
There are a number of ways you can help effectively manage your lupus and live your best life with the disease. Be prepared to make drastic changes to the lupus lifestyle.
- Learn as much as you can about lupus and what it does to your body from credible sources. Being well informed about the disease will enable you to gain control and remove fear.
- Commit to a healthy diet. This includes a variety of whole grains, fresh fruit and vegetables, fish, chicken, limited red meat and nuts. Saturated fats should be avoided as it can raise cholesterol levels and may contribute to inflammation. Saturated fats are found in fried foods, commercial baked goods, creamed soups and sauces, animal fat, processed meat products, and high-fat dairy foods. Avoid refined and processed foods such as white bread, pasta and sugar. Avoid greasy, spicy and acidic foods. Drink eight glasses of water daily and refrain from fizzy drinks. Avoid garlic, Echinacea and alfalfa sprouts as it is associated with flare-ups. Aim for a healthy weight. Ideally, stick with a strict, plant-based diet. Seek the help of resources and/or a dietician to create tasty and nutritious menus.
- Many patients take supplements such as omega-3 fatty acids, folic acid, vitamin D and calcium. Check with your doctor before using any supplements.
- Exercise regularly. Do this moderately without becoming fatigued. Walking, Pilates and swimming are recommended. Exercise improves wellbeing and prevents muscle waste.
- Avoid excessive exposure to the sun as it causes flare-ups. Protect yourself against UVA and UVB rays by avoiding the midday sun and using maximum strength sunblock (SPF 30 or more) and broad-trimmed hats.
- Keep a medical journal. Andrea’s Gift Foundation recently launched the first lupus medical journal in sub-Saharan Africa. This highly specialized 12-month journal is a hard-covered 370-page A5 booklet with dedicated pages for record-keeping of all medical information; practical lifestyle information including diet, rest and meditation; inspirational quotes and images; daily gratitude and reflection exercises; and daily pain, fatigue, mood and medication trackers. Take this to every doctor’s appointment as it will provide critical information and save on your consultation time. Order an AGF medical journal here.
- Always take your medication exactly as prescribed by your doctor. Make sure to ask your doctor about any potential side effects of your medication or treatment. If you have any negative or uncomfortable reactions to your medication contact your doctor. First, record it in your journal so that it is easy to follow up its real cause.
- Make every effort to avoid stressful situations as stress triggers flare-ups. This may mean restructuring your schedule or reconsidering your career choice.
- Sleep at least eight hours daily.
- Do not smoke or quit smoking now.
- Avoid alcohol or drink it in moderation.
Other points to consider:
Do not allow your joy to be ruled by lupus. Transform your thinking to be such that no matter what, you will make the most of the situation. Journal what works for you as it could help you stay positive in stressful times. Do not allow your conversations with others to be only about the condition. Read inspirational books, stories, movies, documentaries and create memorable experiences for yourself.
- Force yourself to have a routine. It is not always fun adjusting, but if you persevere you will get it right. Examples include: 15 minute daily walks, eat green veggies daily, smile as often as possible, shower every morning, indulge for 20 mins in a passion which could be reading, sewing or some form of craft.
- Avoid negative news as much as you can.
- Don’t allow the side effects of the medication to overwhelm you. Always find ways to win. If, for example, you are on medication that makes you eat a lot, rather snack on bits of fruit and vegetables instead of sweets and chips.
- As you practice these disciplines, your health will improve and so will your outlook on life.
Lupus & Mental Health
Lupus will most likely affect your mental health as a direct result of:
- The disease process.
- Your psychological reaction to having lupus.
- The side effects of treatment.
Mental effects of lupus include:
- Cognitive Dysfunction. You may experience forgetfulness or difficulty thinking, otherwise referred to as ‘fuzzy head’ or ‘lupus fog’.
- Anxiety and Depression
Speak to your doctor if you are experiencing any of these symptoms so they can refer you to a mental health professional who will help you identify ways to cope with lupus.
Other psychosocial factors relating to lupus include:
- Lack of societal support
- Socio-economic challenges
Joining a local or online support group will also help in tackling the mental challenges of the disease. Invest time in doing leisurely activities (hobbies) that relieve stress and can act as effective coping mechanisms.
Lupus & Pregnancy
Women with lupus can become pregnant. Lupus does not affect a woman’s ability to get pregnant, but it does increase the risk of pregnancy complications. Lupus pregnancies are often considered high-risk, and you will need to work very closely with your doctor. Discuss with your doctor before you consider becoming pregnant. Your lupus should be under control or in remission for at least six months before you get pregnant, and you need to ensure that all the medications you are taking are safe for the baby before you fall pregnant. Getting pregnant during a flare-up (when lupus is active) may result in complications such as miscarriage, stillbirth or premature birth.
If you are not planning a pregnancy, use family planning until you want a baby. Oral contraceptives containing lower doses of estrogen are probably safe in women with mild lupus but should be avoided in women at increased risk of clotting, or in women with moderate to severe lupus. Other non-pill options for contraception include injectables, implants, and the IUD.
Lupus in Africa
In a 2013 research paper entitled: ‘Lupus in Africa: can we dispel the myths and face the challenges?’, researchers Dr N.Tiffin, Prof B. Hodkinson and Dr I. Okpechi highlight the dire need for lupus education in Africa.
There is a perception that lupus is largely uncommon in the continent. Recent studies, however, suggest that this is not the case. The apparent low incidence rate may be the result of underdiagnosis due to poor access to health care; low disease recognition within primary health care settings; limited access to diagnostic tools; and inadequate numbers of specialist physicians.
The findings of the research paper showed that the patient outcome is poorer in African countries than in the developed world.
There is a lack of diagnostic power, poverty and no capacity in African settings. Even when the SLE is diagnosed, the illness is well advanced and the ability to access treatment is not available.
There is also a desperate need to explore inexpensive therapies for SLE. Adherence to treatment is a concern amongst SLE patients, worldwide, and may be particularly important in poor socio-economic conditions where low levels of formal education, large distances to travel for specialist care, and expensive therapy all contribute to low follow-up rates.
In addition to this, there are social and cultural factors at play. Women, who are most affected by the illness, find SLE particularly difficult to deal with as they are usually the ones who run large households. They may be viewed as incompetent and stigmatized as ‘weak’ and ‘infertile’. The condition is also often directly associated with spiritual forces (especially when it presents itself in psychosis), and patients have been said to endure humiliating ‘cleansing’ rituals to ‘heal’ them.
There is a need to create awareness and to educate healthcare professionals on how it manifests. Healthcare services also need to improve.
According to Ghanaian rheumatologist Dr Dzifa Dey, research has shown that the prevalence of lupus is higher in people with West African descent than Caucasians for reasons yet unknown. Dr Dey conducted research in Ghana in 2015 on newly diagnosed patients and found that a year later 48% of them had deceased due to the disease.
Other recent studies raise a warning flag regarding the number of SLE cases that might be going undiagnosed in Africa. It highlights a need for concerted research into the incidence, prevalence, diagnosis and management of SLE across the continent.
Outlook on Lupus
People experience different symptoms, effects and complications of lupus, and therefore life expectancy is difficult to calculate with this disease. With appropriate treatment, consistent lifestyle measures and frequent clinical follow-ups, it is possible for most people with lupus to live a normal or nearly normal life span.
Researchers hope to identify the molecular pathways that cause lupus so that they can target them for new therapies. Scientists also hope to find people who have a risk of lupus through genetics so that doctors can implement earlier measures to improve life expectancy.
Once there is better awareness by the lupus community, general public and health care workers, it will in effect influence a speedier diagnosis and proper management of this life-threatening disease.
References & Resources