Lupus is an autoimmune disease that causes your body's antibodies to attack it's own organs and tissues, triggering inflammation and pain. It is estimated that 1 in 1000 people in the UK have lupus. 90% of people with lupus are female, usually aged 15-45 with a greater prevalence in Black and Asian women. It takes on average 6.4 years to be diagnosed with lupus, often with other diagnoses suggested along the way.
There are a large range of symptoms:
Skin rashes
Joint pain, stiffness or difficulty moving- especially in the morning and can take between minutes to hours to wear off
Joint swelling, warmth or tenderness to touch
Rashes from sunlight/UV light (including the classical "butterfly" rash on the cheeks and nose)hes from sunlight/UV light (including the classical "butterfly" rash on the cheeks and nose)
Flu like symptoms and or night sweats
Headaches, migraines
Fatigue (80-90% of people with lupus report this is their main symptom) - tiredness so severe it makes daily activities difficult
Brain fog
Dry eyes or mouth - sensation of sand in the eyes, regularly waking at night to drink water
Mouth or nasal ulcers - shallow or recurring ulcers or sores that won't heal
Unexplained weight gain or weight loss
Inflammation of the tissues covering internal organs with associated chest and/or abdominal pain
Seizures, mental illness or other cerebral problems
Kidney problems
Depression
Hair loss
Haematological disorders including anaemia
Swollen glands
Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynauds)
Many of these symptoms can become worse if you are stressed. People are often diagnosed with anaemia, eczema, fibromyalgia. We recommend that you tell your GP about your symptoms and keep a log of your symptoms, note their frequency and severity. You should be referred to an autoimmune / rheumatology specialist
Research is still trying to find what causes lupus - as it's mostly women that are affected it is thought there is a link with female hormone changes - progesterone and oestrogen - during puberty, pregnancy and menopause. Viral infections, long courses of some medications and trauma can trigger lupus. Sunlight can cause a flare up of lupus which may indicate an environmental link. Lupus is often triggered in people where there is family history of lupus and/or other immune system illnesses such as arthritis, MS and rheumatism. Most recently autoimmune conditions have been linked to our bodies gut bacteria, the microbiome. Black and Asian women may be more at risk of developing severe lupus due to healthcare inequalities.
Whilst there currently is not a cure for lupus, there are several things you can do to help manage the condition
from various sources including https://www.lupusuk.org.uk/manage-your-lupus/
Eat a Mediterranean diet ( no not pasta and pizza!), unprocessed food, lean meats, fish, olive oil, broad range of vegetables and fruit
Limit your alcohol intake
Try gentle exercise such as yoga
Join a support group for people with lupus
Become well-educated about lupus
Offset fatigue by rest and by pacing daily activities
Try to resolve stress, depression, pain or anger
Avoid exposure to direct sunlight and fluorescent lights
Be open with family and friends on lupus unpredictability
Develop new interests and skills if wished and if able
Ask for help from family, friends and health professionals
Lupus UK report that "Careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled, most patients being able to live a normal life span. Doctors will usually only keep the patient on high impact medication for as short a period as possible.
Non-steroidals, Aspirin etc - anti-inflammatory drugs (NSAIDS), used for patients who suffer mainly from joint/muscle pain. Aspirin, heparin or warfarin may be prescribed in the case of patients needing anticoagulation treatment.
Living with Pain
Anti-Malarials - these are of help in patients with skin and joint involvement and of some assistance with fatigue. The drugs may be sufficient for patients with moderately active lupus to avoid using steroids. Hydroxychloroquine has anti-inflammatory properties, some sun-protective features and gives some protection against clotting - mepacrine is also used.
Steroids such as prednisolone have been vital in the improvement in lupus care and in some cases are life saving. They have a profound effect on inflammation and suppress active disease. The dosage depends on the severity of the symptoms. Once the disease is under control the dosage might be reduced gradually and/or it might be possible for the patient to transfer to other medication. The side-effects of steroids are well-known and include possible weight gain, muscle weakness, and over time the possibility of osteoporosis. For more information go to:
Medicine Guide for steroids
Immunosuppressants - these drugs are widely used in more severe disease. The most commonly used are azathioprine, methotrexate and cyclophosphamide. Azathioprine is a milder drug and used for mild to moderate kidney disease, or where its difficult to reduce steroid dosage. Cyclophosphamide, usually given by pulse, is widely used for kidney disease and is very effective. Regular blood testing is required initially 2-3 weekly, subsequently 4-6 weekly whilst on such medication. For more information on these drugs go to:
Other drugs - Other drugs are less frequently used in lupus and include intravenous immunoglobulin (often used when the platelets are low) and cyclosporin A, the drug widely used in transplantation medicine to suppress rejection. For very severe skin disease in patients where pregnancy is not a consideration, thalidomide has proved an extremely powerful medication.
Non-lupus drugs - Various medications have helped improve the prognosis in lupus. These include a variety of improved blood pressure tablets and diuretics, anticoagulants (aspirin or warfarin) in those patients with a clotting tendency, anti-epileptic and anti-depressive medication. Skin creams include corticosteroids and newer, vastly improved sun-protection creams. There are now, in addition to standard calcium and vitamin D preparations, modern effective drugs for the prevention and treatment of osteoporosis."
"Exercise is an important part of taking care of yourself and your wellbeing. Just like everyone else, where possible, people with lupus need to exercise regularly or engage in some kind of movement. It’s very important to recognise that lupus affects everybody differently and so not everyone with lupus can do a wide range of exercises, but most people with lupus can take part in some form of activity. It is also important to realise that the amount of activity you can manage is likely to fluctuate as your lupus does." It is recommended that you check with your GP or autoimmune consultant which exercise is suitable for you.