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22/Feb/2023

Do you remember the TV show House? Hugh Laurie played the brilliant but grumpy, antisocial doctor addicted to pain meds who secretly has a heart of gold. Yep, it had all the tropes 😂.

The show created a lupus meme – where a diagnosis of lupus was often mentioned on the show to which House’s reply would always be, ‘it’s not lupus’. And most of the time, he was right.

The meme highlights the fact that lupus is rare, complex, and difficult to diagnose.

And sometimes, it is lupus (as was the case in an episode in season 4).

So what is lupus?

Lupus (systemic lupus erythematosus) is a chronic condition that can cause inflammation and pain in any part of your body. Symptoms vary from person to person and can range from mild to severe.

Anyone can get lupus; however, women are more likely to develop it than men. It’s usually diagnosed in people aged between 15-45.

Certain ethnic groups are also more likely to develop lupus, such as Indigenous Australians, Africans, Hispanics, Asians and Native Americans.

Causes

Lupus is an autoimmune disease. That means it occurs as a result of a faulty immune system.

Your immune system is designed to identify foreign bodies (e.g. bacteria, viruses) and attack them to keep you healthy. But in the case of lupus, your immune system mistakenly targets healthy tissue.

This causes pain and inflammation in parts of the body such as the skin, joints, and internal organs (e.g. kidneys, heart and lungs).

We don’t know why this happens. Scientists believe a complex mix of genes and environmental factors may be involved.

Symptoms

Symptoms can vary greatly between people and may include:

  • skin rashes
  • joint and muscle pain
  • sensitivity to light
  • hair loss
  • fatigue
  • fever
  • mouth ulcers
  • weight changes
  • organ involvement (e.g. kidneys, heart, lungs)
  • pale, blue, or red fingers or toes triggered by cold or stress (Raynaud’s phenomenon)

It’s unlikely that one person will experience all of these symptoms. At times the symptoms you experience as a result of your lupus (e.g. rash, pain, fatigue) will become more intense. This is a flare.

Flares are unpredictable and can seem to come out of nowhere. They’re often triggered by stress or exposure to ultraviolet light.

Diagnosis

Lupus can be a difficult condition to diagnose. Symptoms vary significantly from one person to another and are similar to those of other conditions. They can also change or fluctuate. So, it may take months or years to get a definitive diagnosis of lupus.

No single test can diagnose lupus, so your doctor will use a combination of tests to confirm your diagnosis. They may include:

  • Your medical history. Your doctor will ask about your symptoms, family history and other health issues.
  • A physical examination – including your joints and skin to look for any signs of change, inflammation and rashes.
  • Blood and urine tests.
  • Tissue biopsies of the skin or kidneys.

Test results also help rule out other conditions that may have similar symptoms.

Your GP should refer you to a rheumatologist if they think you have lupus. Rheumatologists are doctors who specialise in diagnosing and treating problems with joints, muscles, bones and the immune system.

Treatments

While there’s no cure for lupus, treatments are available to help control disease activity and improve symptoms. They include medicines and self-care.

Medicines

Medicine can help manage your symptoms and assist in controlling your immune system.

Because people with lupus experience different symptoms, and to varying degrees, there’s no ‘one size fits all’ treatment. You might need to take a combination of medicines.

  • Hydroxychloroquine is very effective at reducing inflammation and reducing flares. It’s the first-line medicine for most people with lupus.
  • Non-steroidal anti-inflammatory drugs or NSAIDs may temporarily relieve pain and inflammation. NSAIDS should be avoided by people with kidney disease.
  • Corticosteroids (or steroids) are used to quickly control or reduce inflammation. They come in different forms: tablets, injections, or a cream to apply to skin rashes.
  • Disease-modifying drugs may be needed to suppress your immune system and control symptoms if you don’t respond to hydroxychloroquine and/or steroids.
  • Biological disease-modifying medicines (biologics and biosimilars) also suppress the immune system. They may be used in more severe cases of lupus that aren’t responding to treatment. These medicines target the specific cells and proteins that cause inflammation and tissue damage rather than suppressing your entire immune system.

All medicines can have side effects. It’s important you discuss these with your doctor and know what to do if you experience any. Your doctor will also monitor your response to the medicines closely. You may need regular blood tests depending on the medicines you’re taking.

You should also inform your doctor of any other medicines or complementary therapies you take. They can potentially affect your lupus medicines.

Self-care

There are many things you can do to manage your lupus.

  • Learn about your condition. Understanding lupus allows you to make informed decisions about your healthcare and actively manage it.
  • Manage your exposure to ultraviolet (UV) light. UV light, especially sunlight, can cause a flare. This can include skin rashes in sun-exposed areas. Remember to wear 50+ UVA and B sunscreen every day (even if it’s cloudy). You should also cover your skin and wear a hat and sunglasses outdoors. Less commonly, UV light from fluorescent lights, including low-energy light bulbs, may cause rashes in some people with lupus.
  • Stay active. Regular physical activity has many health benefits, including helping you to manage your symptoms. When you start exercising regularly, you should notice an improvement in the quality of your sleep, an increase in energy levels, a reduction in fatigue, and improvements in your overall strength and fitness. Exercise can also help prevent long-term consequences of lupus, such as heart disease and osteoporosis.
  • Learn ways to manage your pain. Pain is one of the most common symptoms of lupus, so it’s crucial to learn ways to manage it effectively. Read our A-Z guide for managing pain for more information.
  • Manage stress. Stress can aggravate your symptoms, so learning to deal with stress is very helpful. Things you can do to manage stress include planning your day and setting priorities, using relaxation techniques, getting a massage or listening to music. And, where possible, avoiding people and situations that cause you stress.
  • Quit smoking. Smoking cigarettes can worsen your lupus symptoms and reduce the effectiveness of particular lupus medicines. It can also affect your bone health and increase inflammation.
  • Ask your GP about your vitamin D, calcium and cholesterol levels. Lupus can affect them all, and you may need to take supplements or medicines to correct any problems.
  • Sleep well. Not getting enough quality sleep can worsen your symptoms; however, getting a good night’s sleep when you have chronic pain can be difficult. If you’re having problems sleeping, talk with your doctor about ways you can address this.
  • Eat a healthy, balanced diet. While there’s no specific diet for lupus, it’s important to have a healthy, balanced diet to maintain general good health and prevent other health problems, such as diabetes and heart disease. Lupus can also cause weight loss or gain depending on how it affects your body and the medicines you take. A healthy balanced diet may help prevent this. Talk with your doctor if you’re concerned about your diet or weight.
  • Pace yourself. Pacing is an effective strategy to help you do the things you want to do by finding the right balance between rest and activity (both physical and mental). This will help reduce your risk of flares and fatigue.
  • Get support from others. Research has shown that people with positive social support cope better with pain. Family, friends, colleagues, and health professionals can help you manage. A peer support group may be another option.

Pregnancy

Most women with lupus can have children. However, there’s an increased risk of complications such as premature labour, high blood pressure, blood clots and miscarriage.

For these reasons, it’s essential that you plan your pregnancy carefully.

The healthier you are before you get pregnant, the greater the chance you’ll have a healthy pregnancy and baby. Aim to have your condition under control and be in the best possible health.

Talk with your doctor and specialist before you get pregnant. They may need to change your medicines to ensure a safe pregnancy.

Complications

Lupus is an unpredictable condition that can affect any part of your body, including your internal organs. Working closely with your healthcare team, following your treatment plan, and staying informed about lupus is the best thing you can do to reduce your risk of complications.

Contact our free national Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issuestelehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

More to explore


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18/Nov/2021

Written by Rachel Lea

During the 32 years of living the life of a Lupus Warrior, I’ve come to liken the feeling of battling lupus to the principles of the board game Snakes and Ladders. When the dice rolls, you take the number of steps forward that the dice dictates. Literally one step at a time. When you’re feeling well, and your lupus is under control, you may even land on a ladder and climb up the board a little bit further. When that’s happening, you feel truly happy, as you’re able to maintain a sense of balance and stability. It just feels good.

But then the game can change without warning, and the dice can roll towards a snake. When you hit a snake, it boldly raises its head and hisses at you. Taunting you. Because you know what’s coming. You’ve suffered another setback, another lupus flare. And so you begin to slide. You slide all the way down the back of that slippery snake, sometimes to the bottom of the board. That soaring happiness dissipates as you realise you have to begin the game all over again, and fight your way back up to the top of the board. This is how the game of lupus is played each day. Over and over and over again. At some point, you’ll always fall back down. Why? Because lupus always wins.

So the never-ending tweaking of medication takes place, whether it be increased steroids or methotrexate. This’ll require months and months of tapering back to the dose at which I was originally controlling my lupus. Before that flare took me down. My symptoms of extreme fatigue, joint and muscle pain, fevers, migraine-like headaches, mouth ulcers and hair loss are being treated by these medicines. It’s draining. And bloody frustrating! Particularly when I felt I was managing my lupus and overall health really well, and then, boom!

After thirty-two years of experiencing such flares, I’ve grown to realise that the only way to fight back is to simply let go. Let go of everything. Place myself in a protective bubble and focus on me. Hope that the drugs kick in quickly and move with the pain and discomfort the best way I can. I’ve grown to learn that it takes strength to surrender and put trust and faith in the universe. That even when I’m struggling like this, I’m exactly where I’m meant to be. I know this because when I’ve been too stoic, trying to rise above the pain and fatigue, the resulting flare has been longer and more challenging to overcome.

I grew to learn very early into my diagnosis the benefits of being very gentle and kind to myself. If that means having a teary and a good sook, so be it. If that means I’m in bed for days or even weeks, I’ve no choice but to give in. If it means I’m back on the higher doses of medications, with all of the nasty side effects that come with them, then that’s just the way it is. I just have to roll with it as best I can. I need to let go so I can get back on the game board again and keep rolling the dice.

I’m a kinder, more considerate and less judgmental person because of lupus. I’m more patient and adaptable when faced with new challenges. I’ve recognised that being able to persevere and be resilient in the face of uncertainty is a gift. Self-acceptance cultivates much inner peace, but when my acceptance of life with lupus is tested, I’ve learned to respect what this disease is and what it can do. If I wage a war against myself and push through without enough rest and respite, I’ll be causing more inflammation, more damage, and undo all the good I’m trying to nurture within my body. And that’s no good for me in the short or long-term. I’m managing a disease without a cure, one that’s unlikely to leave me anytime soon.

Not being well enough to continue my beloved vocation of working as a VCE secondary school teacher, I’m currently on another journey of personal growth and acceptance. In addition to having lupus, I’ve also been battling fibromyalgia for 8 years. As I became sicker, teaching became more challenging than usual, even when working part-time hours. I was also working within a combative, negative work environment. I was constantly asking myself, ‘how can I keep moving forward, finding hope and purpose as a chronically ill person in a toxic work environment like this?’ One where people strongly resisted the opportunity to invest more time and effort into creating greater goodwill and positive change that everyone could benefit from. How long could I endure the frustration of working like this and be in the best health possible? And ultimately, the question which intrigued me the most, ‘how do other people, like me, who have invisible chronic illnesses, cope in stressful, challenging workplaces? How do they find their way in the world when their pain is invisible to those around them? ’

With too many lupus flares to bounce back from and a working environment that wasn’t likely to improve, I resigned from my teaching job. It’s been a very isolating, extremely lonely and sad time for me. However, over time I’ve been able to reflect on the challenges of having lupus and working in a difficult work environment. This has resulted in my book ‘Lupus = Lift Up, Persevere, Use Strength’.

I’ve written my book in 3 parts. The first part, ‘Lift Up’, examines the 3 long years it took to diagnose my lupus. I was symptomatic at age 14 and diagnosed at 16. I describe the social, emotional and physical impacts of being ill as a teenager, its effects on my parents and family, and the stress of misdiagnosis and experimental treatment along the way. In part 2, ‘Persevere’, I discuss the struggles of having lupus while finishing school, university and the fear of entering the workplace as a secondary school teacher with a chronic illness. In the final part, ‘Use Strength’, I share the challenges of life in the workplace with an invisible illness and how I’ve tried to maintain hope and perspective.

It’s my greatest hope that my book can offer companionship and unity to fellow Lupus Warriors, chronic illness fighters, their carers and loved ones. I also hope to generate greater understanding and awareness of lupus, and cultivate more compassion and empathy for the challenges of living with a chronic illness. In all of the teachings that having lupus continues to bring, I know I must keep putting into practice what I’ve learned in being able to surrender and embrace the unknown with more courage, grace and acceptance.

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services be sure to call our nurses. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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