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World Lupus Day: coming to terms with diagnosis and living with the disease

Posted: 07/05/2021


10 May 2021 is World Lupus Day, but what is lupus and why do people need to ‘make lupus visible’?

This World Lupus Day, the aim is to use the power of social media to show the world the many faces of lupus and highlight the impact of this debilitating autoimmune disease.

The NHS website describes lupus as ‘a long-term condition that causes joint pain, skin rashes and tiredness’ but the reality is that this only describes the mild symptoms of a chronic illness that has no cure, can damage any part of the body (skin, joints and/or organs) and can be life-threatening.

Many people will have heard the term ‘lupus’ before without fully understanding its effects - this article provides further information on what the condition is, how is it treated and what a diagnosis means for an individual.

What is lupus?

Lupus is the abbreviation for systemic lupus erythematosus (SLE). There are other types of lupus: cutaneous lupus, drug-induced lupus and neonatal lupus. This article focuses on SLE.

An autoimmune disease, lupus can be triggered by myriad factors including puberty; the menopause; childbirth; a viral infection; through sunlight; as a result of trauma; and after a prolonged course of some medications. One or more of these triggers may set off the illness in individuals who have a susceptibility to lupus.

Lupus is not infectious or contagious and it is more prevalent worldwide than leukaemia, muscular dystrophy and multiple sclerosis. The illness affects about one in a thousand people in the UK and is approximately nine times more common in women than in men. It most typically develops in women aged between 20 and 49, but anyone at any age can be affected.

People living with lupus can experience significant symptoms including pain, extreme fatigue, hair loss, cognitive issues and other physical symptoms which affect every aspect of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes and painful joints. For others, there are no visible symptoms.

Lupus should always be treated by a doctor and, with good medical care, most individuals with lupus can lead a full life.

How is lupus diagnosed?

The symptoms are wide ranging and can be suggestive of other conditions, so it can often take months or sometimes years to reach a diagnosis. Rarely do two people with the illness suffer the same symptoms, which can vary from one to many in number.

Lupus UK lists the following as possible manifestations of lupus:

  • joint/muscle aches and pains;
  • headaches, migraine;
  • extreme fatigue and weakness;
  • kidney problems;
  • increased risk of miscarriage;
  • oral/nasal ulcers;
  • rashes from sunlight/UV light (including the classical ‘butterfly’ rash on the cheeks and nose)
  • hair loss;
  • flu-like symptoms and/or night sweats;
  • depression;
  • weight gain or loss;
  • haematological disorders including anaemia;
  • inflammation of the tissues covering internal organs with associated chest and/or abdominal pain;
  • swollen glands;
  • seizures, mental illness or other cerebral problems; and
  • poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynaud’s).

Diagnosis of lupus is not straightforward and is usually achieved through a rheumatologist though other specialists may also be involved (including dermatologists and kidney specialists). The path to diagnosis may require the investigation of any of the following: skin; blood; fatigue; joints; heart; fever; kidneys; lungs; brain; swollen glands; nervous system; and weight changes.

Most people with lupus have an antibody called antinuclear antibody (ANA) in their blood. Another antibody called anti-double-stranded DNA (anti-dsDNA) is often present in individuals with lupus. Various other antibodies are also associated with the disease, but they can also occur in well people who do not have lupus. It is the typical symptoms combined with high levels of certain antibodies that usually indicate that an individual has developed lupus.

Treatments

At present, there is no cure for lupus. However, careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled and most patients live a normal life span. Lupus can go into remission with treatment, but this can take time and depends upon the extent of an individual’s symptoms. Those suffering with lupus can also have flare ups of symptoms.

While the treatments for lupus are significant, they can in themselves cause serious side effects. The treatments required will depend upon the symptoms suffered, but can include: non-steroidal anti-inflammatory drugs (NSAIDS) for symptoms of joint/muscle pain; aspirin, heparin and warfarin where anticoagulant treatment is required; anti-malarials for skin and joint symptoms as well as providing some assistance with fatigue; steroids, which have a profound effect on inflammation and suppressing active disease; immunosuppressants, which are widely used in more severe disease; and regular blood testing. Other drugs sometimes used include intravenous immunoglobulin and cyclosporin A (used in transplantation medicine to suppress rejection).

Once lupus is diagnosed, a person will require regular checks and tests (for example, blood tests to check for anaemia and urine tests to check for kidney problems). Further tests and checks may also be required to monitor the response to and the effectiveness of any medications prescribed.

Treatment costs

It is important to note that in England, lupus is not a condition that qualifies an individual for free NHS prescriptions and so charges are £9.35 per item. In Wales, Northern Ireland and Scotland, prescriptions are free to lupus sufferers. The list of medical exemptions was set 53 years ago in 1968 and has remained largely unchanged. Lupus is not currently included in the list of medical exemptions, though some diagnosed with the disease will be entitled to free prescriptions due to their individual circumstances.

Lupus patients may qualify for medical exemption if they have developed hypoadrenalism as a result of long-term steroid treatment. In order to check whether the adrenal glands have been suppressed, a ‘short Synacthen test’ may be required - though in some cases, consultants/GPs may agree to sign the prescription exemption form without conducting the test if they are already sure that long-term steroid therapy will have prevented the adrenal glands from functioning as they should.

Prescription prepayment certificates (PPCs) are available for people living in England if they need more than twelve prescribed medicines each year or more than three prescribed medicines in three months. A three-month PPC will cost £30.25 and a twelve-month PPC is £108.10.

Living with lupus

The diagnosis of lupus is a life-changing one and individuals may find being informed of the diagnosis traumatic. The further tests and investigations that need to be conducted following diagnosis and while treatment is put in place may require multiple hospital visits and inpatient assessments, depending on the severity of the symptoms. There can also be many misconceptions about lupus, including a misunderstanding of what the impact is on the individual affected of the symptoms themselves, the diagnosis and the side effects of the treatment.

An individual with lupus will need to adjust their lifestyle depending on their symptoms, the treatment they require and its side effects. For example, if anticoagulation is required, this may preclude an individual from participating in any activities which might result in an injury (eg contact sports and sports with a risk of serious injury such as football, rugby, gymnastics, skiing and boxing).

The fatigue caused by lupus is an incapacity and can have a profound effect on an individual’s day-to-day life, their ability to interact with their friends and family and their ability to study and to work. Lupus symptoms have a fluctuating nature and so can make it difficult to maintain a consistent level of working. For young people diagnosed with lupus, the symptoms and medical appointments can affect their studies. It is important that their school/college is informed of the diagnosis so that the necessary support is put in place.

Lupus is associated with a higher chance of miscarriage. Women who have badly inflamed kidneys due to lupus may have high blood pressure in pregnancy. However, most women with mild or well-controlled lupus at the start of pregnancy are likely to experience few problems. Some medicines used to control the symptoms of lupus may not be advisable in pregnancy, so it is important for women who have lupus and are considering becoming pregnant to plan ahead and discuss this with a specialist.

Strong sunlight can aggravate the symptoms of lupus and therefore long-sleeved clothing and wide-brimmed hats are best in sunny weather. Lupus sufferers are advised to routinely wear SPF 50 sun cream that protects against UVA and UVB to minimise this lupus trigger.

Most people with lupus lead normal, active lives and with modern treatments, which are more effective, the outlook for many is that they may have some mild symptoms with little risk to life. Joint and skin symptoms may continue but can be eased with treatment.

Sadly, in some cases, lupus is severe and can be life-threatening. Inflammation of the kidneys leading to kidney damage can occur, although this is rare. Severe brain involvement is also rare but can be very serious. Modern immunosuppressants have improved the outlook, even for those with extreme cases of disease, and new research can bring unexpected findings each year with resulting progress in treatment and diagnosis.

More information can be found on the World Lupus Day website. Lupus UK is the only national charity that supports people living with systemic lupus and discoid lupus and assists those approaching and coming to terms with diagnosis.


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