• What is lupus and SLE?

    Lupus is an autoimmune disease. A condition in which our own body’s defense system (immune system) produces antibodies that attacks our own body tissues. It causes inflammation in different parts of the body. There are two main types:

    • Discoid lupus that only affects the skin
    • SLE that affects the skin and joints; it often also involves internal organs viz., heart or kidney
  • What are the symptoms of the lupus?

    Most common symptoms of lupus include:

    • Joint pain
    • Skin rashes
    • Extreme tiredness (fatigue)

    Other possible symptoms include:

    • Fever
    • Weight loss
    • Swelling of lymph glands
    • Headaches
    • Mouth ulcers
    • Hair loss
    • Colour changes in the fingers or toes in cold conditions

    Shortness of breath, or pain when breathing in Lupus can have more serious complications if the inflammation affects internal organs such as your heart, lungs, brain or kidneys. You will need regular check-ups with your doctor for early signs of these complications.

  • Who gets lupus?

    Lupus is more common in younger women. Especially it is about nine times as common in women as in men. Rarely, lupus can affect children, but it’s unusual before the age of five. Only about 1 in 15 cases of lupus begins after the age of 50 and it tends to be less severe in people who are over 50.

  • What causes lupus?

    Our body’s defense system (immune system) produces antibodies to fight against infection. But, in lupus, these antibodies attack our own body’s tissues. Though it is not sure why this happens, it’s probably due to environmental, hormonal and genetic factors.

    Lupus isn’t directly passed on from a parent to their children, but if you have a close relative with lupus you’re at increased risk of developing it. Similarly, if you have lupus there’s about a 1 in 100 chance of your child developing it in later life. Lupus isn’t contagious, so you can’t catch it from anyone else.

  • How is lupus diagnosed?

    A diagnosis of lupus is made based on symptoms, a physical examination and blood tests. Many symptoms of lupus can have other causes too, in order to diagnose lupus, your doctor will have to rule out other causes with the help of some tests. so you’ll probably have a number of tests before the diagnosis is confirmed.

    • Anti-nuclear antibody (ANA) test
    • Anti-double-stranded DNA (anti-dsDNA) antibody test
    • Anti-Ro antibody test
    • Erythrocyte sedimentation rate (ESR)/ C-reactive protein (CRP) test
    • Kidney and liver function tests
    • Blood cell counts

    These tests can also be helpful in monitoring the condition after diagnosis – for example, a combination of higher levels of anti-dsDNA and falling complement levels (often accompanied by a high ESR test) is helpful in predicting a flare-up of lupus. If the C-reactive protein (CRP), another measure of inflammation, is raised, your doctor would also consider whether you have an infection.

    A variety of tests are available to check how your heart, lungs, liver and spleen are working. Depending on which organs your doctor thinks may be involved, you may have x-rays, an ultrasound scan, computerized tomography (CT) scan or magnetic resonance imaging (MRI) scan.

    Other concerns

    If you have symptoms such as fever, weight loss and persistent swelling of the lymph glands, your doctor may take a biopsy of lymph gland tissue to rule out cancer, which can also cause these symptoms.

  • What treatments are there for lupus?

    There’s no cure for lupus at present, but it is treatable and usually responds well to a number of different types of drugs – especially when treatment is started in the early stages of the disease. the main groups of drugs used are:

    • Non-steroidal anti-inflammatory drugs (NSAIDs) viz., naproxen, ibuprofen
    • Steroid creams
    • Hydroxychloroquine/antimalarial drugs
    • Steroid tablets (corticosteroids) viz., prednisolone
    • Disease-modifying anti-rheumatic drugs (DMARDs) viz., azathioprine, cyclosporine, cyclophosphamide, methotrexate, mycophenolate
    • Biological therapies viz., rituximab and belimumab. These are newer class of drugs that act against B-cells (the blood cells which produce antibodies).
    • Steroid injections
    • Antihypertensive drugs (drugs to control high blood pressure)
    • Treatments for Raynaud’s phenomenon viz., nifedipine tablets, iloprost injections
  • Self-help and daily living

    Although drugs are important in controlling lupus, there’s a lot that you can do to help manage your symptoms.

    • Following a healthy diet
    • Regular exercising
    • Not smoking
    • Dressing to keep your hands and feet warm in cold weather

    Are some of the lifestyle factors that will help reduce your risk of developing the more serious complications of lupus.

    Managing a flare-up

    Lupus is a condition that naturally improves and worsens (flare-up) at different times. The reasons for a flare-up can vary from person to person, but exposure to sunlight, too little rest time, infections and stress can all play a part. It can be useful if you identify your triggering factor that lead to a flare-up so that you can find a way to manage or avoid them. Consult your healthcare professional for help.

    Fatigue

    Often you may experience fatigue as a big problem with lupus. It may be caused due to anemia or an underactive thyroid gland. However, this can be identified by a blood test and treated. Some medications such as hydroxychloroquine, right balance between rest and activity and even exercises would help.

    Smoking

    • Narrows your blood vessels and increase the blood pressure thus leading to increased risk of stroke, heart attacks and worsening kidney diseases
    • Increases the frequency and severity of lung infections in lupus

    If you feel difficulty to stop smoking, talk to your healthcare professional. They may help you with available treatments that can help you to stop.

    Sunlight

    Too much ultraviolet light from sunlight can cause a red rash across the cheeks and the bridge of the nose, often known as the butterfly rash. It can also sometimes cause problems with internal organs, to flare-up (worsen lupus condition). Bear this in mind when choosing a holiday destination and discuss with your healthcare professional if in doubt. Keep out of the midday sun and wear a hat. Keep your skin covered or use sun cream of SPF 50 or greater – which is available on prescription for people with lupus.

    Exercise

    When the disease is active, you may not feel like doing very much and it’s important to rest when you need to. However, too much rest will cause the muscles to weaken and may make you feel more tired, so you need to find the right balance between rest and exercise. Walking and swimming are recommended as they can improve fatigue, fitness and stamina without putting too much strain on the joints. Even when you’re having a flare-up, a small amount of exercise is helpful and you should have some gentle exercise that you can do even on a bad day.

    Diet and Nutrition

    There’s only limited evidence available on the effect of diet in controlling lupus, though there’s some evidence that a diet low in saturated fat and high in omega-3, which is found in oily fish, may be helpful. You can also try taking fish oil supplements, but make sure that you use fish body oil, not fish liver oil. Be careful of any exclusion diets where large food groups are removed from the diet – you need all the nutrients that a well-balanced diet will provide. Consult a dietitian if you need more specific advice.

  • Hormone replacement therapy (HRT)

    In the past there has been concern about HRT increasing the risk of flare-ups of lupus. However, recent research has suggested that it’s relatively safe to use for short periods if symptoms of the menopause are severe and your lupus is otherwise well controlled.

  • Complementary medicines

    There’s no scientific evidence that suggests any form of complementary medicine helps to ease the symptoms of lupus. But if joint pain is a particular problem, acupuncture may help. The pain relief may only last a short time to begin with but repeated treatments may bring longer-lasting benefits. You may need to visit a private practitioner for these.

    Generally speaking, complementary and alternative therapies are relatively well tolerated if you want to try them, but you should always discuss their use with your doctor before starting treatment. There are some risks associated with specific therapies.

    In many cases, the risks associated with complementary and alternative therapies are more to do with the therapist than the therapy. This is why it’s important to go to a legally registered therapist, or one who has a set ethical code and is fully insured.

    If you decide to try therapies or supplements, you should be critical of what they’re doing for you, and base your decision to continue on whether you notice any improvement.

  • Contraception

    If you have lupus you should use contraceptive pills that contain only progesterone or low-dose estrogen, or consider physical/barrier methods of contraception, such as condoms. This is because estrogen can make the disease more likely to flare up.

    If you’re taking steroid treatment, you should avoid using the contraceptive medroxyprogesterone acetate, which is given by injection. It increases the risk of developing osteoporosis because it reduces the levels of estrogen in your body, which help prevent bone loss. Talk to your doctor if you’re worried about your method of contraception.

  • Pregnancy and lupus

    Most women with lupus should be able to have a baby if they wish to, but it’s best to discuss your plans with your doctor before trying to get pregnant so that your treatments can be altered if need be. Always plan a pregnancy, where possible, at a time when lupus is inactive and you’re taking as little medication as possible

    There’s an increased risk of pregnancy complications in women whose lupus affects a number of different organs and who find it difficult to control their symptoms without certain medications. If you’re thinking of having a baby, always discuss your plans with your doctor or specialist nurse before you start trying. You may need to see an obstetrician with a special interest in lupus for further advice.

    Doctors are naturally cautious about which drugs are used during pregnancy. Steroids are usually well tolerated and many people have used prednisolone, hydroxychloroquine and azathioprine throughout pregnancy without ill effects.

    If you have high levels of antiphospholipid antibodies there’s an increased risk of miscarriage. However, treatment with aspirin and/or heparin reduces this risk, and there are now many more successful pregnancies in women who have these antibodies.

    In pregnant women who have anti-Ro antibodies there’s a small risk (about 1 in 50) that their babies will have neonatal (newborn) lupus syndrome. This means the baby may have a rash and/or a slow heartbeat. There’s a slightly greater risk in following pregnancies, so make sure you discuss this in detail with your rheumatology and obstetric team before considering another pregnancy. Most babies born to mothers with anti-Ro antibodies will be fine, but it’s important to have regular scans of the baby’s heart during the pregnancy.

  • Fertility and pregnancy

    Modern treatments have improved the outlook for people with lupus. However, it remains a variable and unpredictable condition and may even be life-threatening for people whose vital organs are affected.

    It’s hard to predict exactly how lupus will affect you. Most people with lupus don’t have the more serious complications, but your doctor and rheumatology nurse specialist will be on the look-out for these so that early treatment can be given if necessary.

    Careful monitoring of the condition is needed so that potentially serious complications can be recognized and treated promptly. For example, some people with lupus will have a greater than usual risk of having a heart attack or stroke. Your doctor will take this into account, along with any other risk factors, such as smoking and raised cholesterol or blood pressure. They’ll suggest treatments and lifestyle changes.

    In young women, the risk of a heart attack or stroke would normally be very low, so although it’s increased by having lupus, the overall risk is still low. Even so, it’s a good idea to think about and discuss this with your doctor.