What is Lupus?

Lupus is a condition in which your immune system produces autoantibodies that attack your body’s cells, tissues and organs. This can cause inflammation in many different parts of your body, though most people will only have a few of the possible symptoms. It is not yet known why the immune system produces these harmful autoantibodies.

Types of Lupus

There are two main types of Lupus:

Systemic Lupus Erythematosus (SLE). This is a more severe condition that can affect many parts of the body, including the skin, joints and internal organs. It is also the most common form of Lupus.

Lupus Limited to the Skin. There are three types:

• Discoid lupus erythematosus (DLE).
• Subacute cutaneous lupus erythematosus (SCLE).
• Chronic Cutaneous Lupus Erythematosus (CCLE).

There are also additional specialised forms of Lupus that include drug-induced, neonatal and childhood forms.

What are the Symptoms of Lupus?

Symptoms of lupus can include:

• joint pain
• a skin rash
• extreme tiredness
• fatigue
• fever
• weight loss
• headaches
• mouth ulcers
• hair loss
• swelling of lymph glands
• your fingers or toes changing colour in cold conditions

The number and severity of symptoms range significantly from person to person. Many people will have long periods with few or no symptoms before experiencing a sudden flare-up, where their symptoms are particularly severe. All cases of Lupus can be distressing and have a considerable impact on a person’s quality of life.

Some medications can also cause lupus-like side effects. Therefore, if you think you have symptoms of lupus, you must discuss this with your GP.

How Is Lupus Diagnosed?

Doctors will diagnose Lupus based on the history of your illness, a physical examination and blood tests. Your doctor may also refer you to a skin specialist or a Rheumatology specialist to help with diagnosis and decide the most effective way to manage the symptoms.

Depending on which organs your doctor or specialist thinks may be affected, you may also have urine tests, X-rays, an ultrasound scan, a computerised tomography (CT) scan or a magnetic resonance imaging (MRI) scan to investigate further.

Blood test results help to distinguish lupus from other conditions that may have similar symptoms. Your doctor may use the following blood tests to help with diagnosis:

• Anti-nuclear antibody (ANA) test About 95% of people with lupus are ANA positive,
• Anti-double-stranded DNA (anti-dsDNA) antibody About 70% of people with lupus have these antibodies.
• Anti-Ro antibody test
• Antiphospholipid antibody test
• Complement level test
• Erythrocyte sedimentation rate (ESR) test
• Kidney and liver function tests
• Blood cell counts

These tests may also be taken regularly to monitor the systems affected by Lupus and determine the most appropriate treatments.

Lupus and Pregnancy

Women and their doctors are understandably cautious about being on certain drugs during pregnancy. This is because your treatments may need to be altered. Women with lupus should have a baby if they want to, but it’s best to discuss your plans with your doctors before trying for a baby.

It is best to plan your pregnancy when your lupus is inactive and you’re taking as little medication as possible.

Lupus Treatment

The management of Lupus focuses on medication, managing each presenting symptom. This means treatment can vary between individuals. Maintaining a healthy lifestyle is a vitally important aspect in helping manage the condition. Smoking, having a poor diet and being sedentary can worsen the symptoms of Lupus.

Medications

The drugs used to treat Lupus depends on the severity of the condition and which parts of the body are affected. Treatments are often changed or adjusted as symptoms flare-up up or improve.

Non-steroidal anti-inflammatory drugs (e.g. naproxen, ibuprofen)

• reduce inflammation
• help with symptoms in your joints

Steroid creams

• beneficial for skin rashes.

Steroid tablets (e.g. prednisolone)

• used for short periods for complications such as pleurisy or pericarditis
• also used for kidney inflammation or severe blood problems

Antimalarials (e.g. hydroxychloroquine)

• reduce inflammation
• used alone or with steroid creams for skin rashes

Disease-modifying anti-rheumatic drugs (DMARDs) (e.g. azathioprine, ciclosporin, methotrexate)

• used to suppress your overactive immune system
• Commonly used for long periods, and you may reduce the dose if symptoms become less active

Biological therapies (rituximab)

• removes B-cells (a type of white blood cell that produces harmful autoantibodies)
• widely used when conventional DMARDS aren’t effective.

Steroid injections

• can be injected into a muscle, joint or vein as an immediate treatment to help control a flare-up
• can also be injected into your scalp if hair loss is a problem

Several new biological therapies which target cells and molecules believed to be part of the cause of lupus are still undergoing clinical trials.

Managing Symptoms Effectively

• A good understanding of your symptoms and how your life has been affected by Lupus is vitally important. Also, having a good assessment of your painful areas can help reduce anxiety or concerns about an injury.
• Understanding your symptoms and pains’ complex nature and cycles can also help you address Lupus’s impact on your life.
• Physiotherapy can help with both these aspects of understanding Lupus.

Managing Fatigue

Fatigue is a prevalent symptom of Lupus. It can fluctuate greatly, meaning you can have good and bad days, which is a major problem. Sometimes fatigue is caused by anaemia or an underactive thyroid gland. This can be identified by a blood test and treated. However, if there is no specific cause of your fatigue, it can be more challenging. Pacing activities and doing activity/ fatigue diaries can help manage the fluctuations in activity and assist a person in achieving their goals.

Staying Active and Exercising

Being active and exercising is an excellent way to help deal with the stresses of having Lupus and managing fatigue. Regular exercise also helps to improve eating and sleeping habits, leading to better general and mental health.

• Hydrotherapy, tai chi, pilates, yoga, walking, swimming or cycling can benefit people with lupus.
• Stretching and mobility exercises can help reduce pain and tightness.
• Specific exercises help build strength and endurance in the ‘posture’ muscles of the body and take the load off achy muscles.

Relief of Muscle and Joint Stiffness, Tenderness and Pain

• Massage – can assist pain relief and help muscle relaxation.
• Acupuncture – can be helpful in the relief of your pain.
• Joint mobilisation – can improve muscle tightness, tenderness and joint stiffness.

Sleep Health

People with lupus often find getting regular restorative sleep difficult. Understanding sleep and its influence on health is important in helping people with lupus. Poor sleep health can affect:

• Mood – Sleep benefits our mood, memory and concentration

• Brain function – Sleep helps to organise memories and improve concentration.
• Emotion – Lack of sleep can make you irritable, affecting your emotions, social interaction, and decision-making.
• Immune system – Without adequate sleep, the immune system weakens, and the body becomes more vulnerable to infection and disease.
• Nervous system – Sleep is a time of rest and repair to neurons. During sleep, neurons rest, replenish and grow.
• Hormones – substances produced to trigger or regulate particular bodily functions are timed to release during or before sleep.

Improving Your Ability to Cope with Daily Stress and Depression

Daily stresses from work or home can increase your Lupus symptoms. You and your physiotherapist can work with your GP to help you develop strategies to manage these stresses.

Referral to a psychologist can also help develop strategies to cope with stressful situations.

Surgery

Surgery is not used to treat lupus. However, if a doctor or specialist felt a problem that needed surgery influenced your lupus, surgery for that problem may be an option.

More Advice

If you have any concerns or specific questions regarding your condition, please ask your physiotherapist or GP.

http://www.arthritisresearchuk.org/arthritis-information/conditions/lupus.aspx – Arthritis Research UK

http://www.lupus-sle.org/index.html – Lupus Foundation