Lupus: Symptoms, Diagnosis and Treatment

Lupus is a collection of chronic autoimmune conditions that can affect different organs and parts of your body. Lupus impacts the lives of around 20,000 people across Australia and New Zealand, with women more likely to be diagnosed than men. About 90% of lupus diagnoses occur in women, and most people develop the condition between the age of 15 and 45 years old. Whilst there is no cure for lupus, there are effective ways to manage your condition. Here is everything you need to know about lupus, the signs and symptoms of lupus, and the steps you or your loved one can take to get diagnosed and begin treatment.

What is Lupus?

Lupus is an autoimmune disease, meaning it causes your immune system to function improperly. Your immune system is designed to detect and attack harmful foreign bodies like viruses and bacteria to protect your health. When lupus or other autoimmune disease occurs, this process malfunctions. Your immune system confuses healthy tissue for foreign cells and attacks them. This can lead to complications and inflammation in the skin, lungs, heart, joints, kidneys and other parts of your body.

There are several types of lupus. The type of lupus you are diagnosed with will influence what parts of your body are affected. The most common type of lupus is known as “systemic lupus erythematosus” – Which can affect almost any part of the body. Other types of lupus include:

• Discoid lupus erythematosus (DLE) – a milder type of lupus that mainly affects the skin.
• Subacute cutaneous lupus – an even milder form of DLE.
• Neonatal lupus – a rare and temporary form of lupus that affects a foetus or newborn baby. It is caused by the mother’s autoantibodies being passed to the child whilst it is in the womb. This can cause issues with the baby’s heart, skin and blood.
• Drug-induced lupus – a reaction to certain types of medications that can produce lupus symptoms. These symptoms typically disappear when you stop taking the medication in question.

How do I know if I have Lupus?

Lupus can be unpredictable and can affect different people in unique ways. Some people will experience few symptoms or only very mild symptoms. Others may have more severe lupus symptoms. People with lupus can experience periods of good health with very few symptoms, interchanged with more difficult periods known as lupus ‘flares’, during which their symptoms are more severe.

Knowing the signs and symptoms of lupus is crucial to getting an accurate diagnosis. It is important to note that not every person with lupus will experience all of its possible symptoms. Diagnosis of lupus can be challenging and time-consuming, so you should seek medical advice as soon as you or someone you love is displaying any of the signs and symptoms of lupus. 

Some of the most common signs and symptoms of lupus include:

• Joint pain, stiffness and swelling (seen in about half of all people with lupus)
• Fever
• Skin rashes which appear or worsen after sun exposure, sometimes including a rash in a butterfly shape across the cheeks and nose (seen in about 20% of lupus cases)
• Fatigue and weakness (experienced by about 10% of people with lupus).

Other symptoms may vary, but can often include:

• Hair loss
• Headaches or migraines
• Confusion or memory loss
• Loss of appetite and weight loss
• Anxiety and depression
• General malaise
• Ulcers in the mouth
• Muscular aches and pains
• Poor kidney function
• Breathlessness and/or chest pain – usually as a result of inflammation in the lining of your lungs (the pleura) or the sac that protects your heart (the pericardium)
• Poor eyesight
• Seizures
• Swollen glands
• Anaemia (low levels of haemoglobin)
• Blue or white tinge to the fingers and toes (known as Raynaud’s phenomenon).

What causes Lupus?

Lupus is an autoimmune disease which has no single known cause. Lupus occurs when your antibodies malfunction and attack your normal, healthy tissue. It is unknown what causes these antibodies to form in the first place, however it might be influenced by hormones, genetics and environmental factors such as high stress levels. Whilst there is not a single ‘cause’ of lupus, the following factors may increase your risk or trigger lupus:

• Hormonal changes – women aged 15 to 45 are most commonly affected, coinciding with a period of frequent hormonal cycling and adaptations
• Excessive UV light exposure from the sun or other sources
• Some chemicals and medications
• Certain infections
• Dietary habits
• Stress 
• Genetic predisposition
• Pregnancy.

How do I get diagnosed with Lupus?

There is not one single test that can determine if you have lupus. Unfortunately, lupus is very difficult to diagnose as the symptoms are highly variable and differ between individuals. They can also closely mimic the symptoms of other conditions, making it difficult to know for sure if it is lupus or something else. It can take months or years to diagnose lupus, but you can assist the process by collecting information about your symptoms. 

Your doctor will screen for lupus by discussing your medical history and your symptoms with you. They may also conduct one or more of the following tests or processes to determine whether you are living with lupus.

• Taking your medical history and recording your symptoms
• Blood tests – these usually include an Antinuclear antibody test (ANA) which helps determine if you have antibodies that are reacting to your own tissue
• Physical examinations to detect inflammation, rashes or changes to your skin, joints or other parts of your body
• Urinal testing using a dipstick to detect protein or blood in the urine
• Chest x-ray
• Electrocardiogram or echocardiogram to determine your heart function
• Biopsy of affected tissue to detect lupus – this will depend on where you are experiencing symptoms in your body

The earlier you can determine whether you have lupus, the sooner you can start receiving appropriate treatment. Early diagnosis and management can have a drastic impact on your long term quality of life.

What should I expect at my initial appointment with my doctor?

Your first appointment with your doctor will consist mainly of a conversation to help your practitioner understand your current condition, symptoms and concerns. Be prepared to answer these questions to save time and allow more in-depth conversation about anything you want to know. Your doctor will ask you about your symptoms, when they first occurred, any triggers you have noticed that exacerbate your symptoms, and how much your symptoms impact upon your daily life. Some specific questions to expect include:

• Do you experience skin rashes, especially after sun exposure?
• Do you experience cold, pale or numb fingers when exposed to the cold?
• Do you experience problems with concentration or memory?
• Do your symptoms impede your ability to function in your personal or professional life?
• Do you have any other diagnosed conditions to be aware of?
• Do you regularly take any medications or supplements?
• Are you pregnant or trying to become pregnant?

What information can I collect to assist with getting a diagnosis?

You are the expert in your own lived experience. If you suspect you or a loved one may be living with lupus, the best thing you can start doing today is to make an appointment with your trusted healthcare professional. Whilst you wait for your appointment, you can prepare for your consultation by starting to collect information about your experience. This will help you to remember what you want to discuss with your doctor and ensure you don’t miss any important information that may support your diagnosis. You can use a piece of paper, a Google document or the notes section on your phone, so you can easily take notes or track your symptoms as they occur. Some helpful things to note down before your appointment include:

• When your symptoms first appeared
• Whether your symptoms are ongoing or if they come and go
• Any history in your family, especially siblings and parents, of lupus or other autoimmune diseases
• Any medications or supplements you are regularly taking
• Pregnancy or trying to conceive – some medications that may be recommended cannot be taken if you are pregnant. Always inform your doctor of any pregnancy before taking new medications.

It is natural to feel nervous or worried before your appointment. Feeling unwell and not knowing why is incredibly stressful, so you may also wish to write down some questions for your doctor so that you don’t forget them amidst the flurry of new information. Some helpful questions to help you feel informed and empowered may be:

• The possible causes of your symptoms
• The initial screening tools and tests you will need to undergo
• Additional tests that may be needed if the first screening tools produce inconclusive results
• Any treatments or lifestyle changes that you can start making now to alleviate your symptoms
• Any restrictions you need to follow whilst undergoing screening tests 
• Whether you should see a specialist, and if so, which specialists should you see and when
• Anything else you are concerned about, or further clarification for anything you didn’t fully understand.

Treatment options for Lupus: How can I manage my condition?

There is no cure for lupus, but there are effective treatment and management strategies. The earlier you detect lupus and begin treatment, the greater your chances of maintaining a high quality of life and preventing future damage. Treatment for lupus is highly individual depending on your signs and symptoms, and you may need to change your treatment approach as your symptoms ebb and flow. Make sure you fully understand your treatment options, so you can consider the risks and benefits and make an informed, empowered decision. Treatment options can include medications, medical procedures and some lifestyle changes.

Medication to treat Lupus

Medication options for treating lupus often include:

Nonsteroidal anti-inflammatory drugs (NSAIDs)

Used to treat pain, fever and swelling brought on by lupus. Side effects can include kidney problems, stomach bleeding and increased risk of heart problems.

Corticosteroids

This is to counter inflammation. Side effects can include easy bruising, weight gain, high blood pressure and diabetes. These side effects become more likely at higher doses.

Antimalarial drugs

This drug is use to decrease autoimmune flares. Side effects can include stomach upset and in rare cases, retinal damage to the eyes.

Immunosuppressants (in severe cases only)

Suppressing the immune system is usually considered only in serious cases, as side effects can be severe, including increased risk of infection, liver damage, decreased fertility and an increased risk of cancer.

Biologics

Side effects can include nausea, infections and diarrhoea.

Rituximab

Used in cases where other medications have been ineffective. Side effects can include allergic reactions.

Lifestyle changes to help manage Lupus

Medications aside, you can make certain lifestyle and behaviour changes to help reduce the severity of your lupus symptoms. These can include:

• Getting regular checkups with your doctor
• Avoid excess UV exposure and using sun protection when outdoors
• Being physically active regularly
• Avoid smoking
• Consuming a healthy, varied diet
• Ask your doctor about supplements, including vitamin D and calcium.

Getting support to manage Lupus

Being diagnosed with an autoimmune disease can be a scary and stressful experience, so don’t try to handle it all on your own. Always contact your doctor or specialist (including rheumatologists, dermatologists, nephrologists and immunologists) if you have concerns or experience a change in your condition. 

You may also like to connect with others who know what it is like to live with lupus. Hearing stories of other people who are successfully managing their condition and leading a fulfilling life can help you to remain positive and helpful during your health journey. Musculoskeletal Australia can help you to connect to a local lupus peer support group, or give you helpful information and resources to support you or a loved one living with lupus. Contact their helpline by calling (03) 8531 8000 or 1800 263 265.

How Homage can assist with your recovery

Lupus can be an exhausting and difficult condition to manage, so it’s important to reach out for help when you need it. Fatigue and pain are common symptoms of lupus and can make it difficult to do all the things you normally do around your home or out in your community. Homage’s team of dedicated Care Pro’s can provide personalised, professional and compassionate care from the comfort of your own home. We can assist you or a loved one with personal and nursing care, transportation to follow-up medical appointments and assist with post-surgery care. We can even help with some domestic tasks and housekeeping, to take some of the pressure off so you can focus on staying well and spending time with the people you love. 

Reach out to find out more about how Homage can help you or a loved one managing lupus by speaking with our Care Advisory team via our website or by calling us on 0480 093 788. Our Care Hotline is operational from 9 am to 5 pm (weekdays) and 9am to 1 pm (weekends and PH).

Need some assistance with care for yourself or your loved one?  Find out how Homage can help!