Managing Lupus
Practical information to help you manage symptoms, recognise changes and look after your health.
YOUR LUPUS TOOLKIT
Small actions can make managing lupus easier.
Living Well With Lupus Checklist
A practical checklist for everyday lupus management
Symptom Tracker
Keep track of symptoms and changes between appointments.
Appointment Planner
Write down symptoms, medicines and questions before your appointment.
My Flare Plan
Record your usual flare signs and what to if symptoms worsen.
MANAGING SYMPTOMS
[battery icon] FATIGUE
Fatigue is one of the most common symptoms experienced by people with lupus.
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Strategies that may help include:
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[tick] Planning activities and prioritising what matters most.
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[tick] Taking regular breaks before becoming exhausted.
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[tick] Maintaining gentle physical activity when possible.
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[tick] Establishing healthy sleep routines.
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[tick] Asking for support when needed.
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Learning to balance activity and rest is an important part of living well with lupus.
[bone icon] PAIN & JOINTS
There are several strategies that may help manage lupus-related joint symptoms
Keeping joints moving can help reduce stiffness and maintain strength.
Activities that may be helpful include:
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Walking.
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Swimming or water-based exercise.
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Stretching.
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Gentle strengthening exercises.
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Low-impact activities suited to your abilities.
During a flare, you may need to reduce activity and allow your body time to recover.
Some people find relief from:
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Warm showers or heat packs to ease stiffness.
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Cold packs to reduce swelling or discomfort.
Always protect your skin and avoid extreme temperatures.
Keeping joints moving can help reduce stiffness and maintain strength.
Activities that may be helpful include:
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Walking.
-
Swimming or water-based exercise.
-
Stretching.
-
Gentle strengthening exercises.
-
Low-impact activities suited to your abilities.
During a flare, you may need to reduce activity and allow your body time to recover.
Keeping joints moving can help reduce stiffness and maintain strength.
Activities that may be helpful include:
-
Walking.
-
Swimming or water-based exercise.
-
Stretching.
-
Gentle strengthening exercises.
-
Low-impact activities suited to your abilities.
During a flare, you may need to reduce activity and allow your body time to recover.
SKIN & SUN
For many people with lupus, ultraviolet (UV) exposure can trigger symptoms or worsen disease activity.
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Sun protection is an important part of lupus management:
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Apply broad-spectrum sunscreen every day.
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Wear protective clothing, hats, and sunglasses.
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Seek shade during high UV periods.
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Be mindful that UV exposure can occur even on cloudy days.
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Your healthcare team can provide advice specific to your skin symptoms and lupus type.
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Sunscreen
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Cover up
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Seek shade
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Check the UV
Could this be a lupus flare?
Changes worth paying attention to may include:
Increased fatigue
Fever
Joint pain / swelling
Feeling generally unwell
New/ worsening rash
Changes in your usual symptoms
Something has changed?
Contact your healthcare team if you notice new, persistent or worsening symptoms.
MANAGE YOUR HEALTHCARE
TAKE AN ACTIVE ROLE IN YOUR CARE
What you can do
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Track symptoms
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Keep medication list
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Prepare questions before appointment
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Attend monitoring
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Inform healthcare team when something changes
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Keep copies of important health information
Questions to ask
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How active is my lupus?
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What symptoms should I watch for?
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What are the goals of my treatment?
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What can I do to reduce my risk of flares?
HEALTHY LIFESTYLE CHOICES
Move
Regular movement can support strength, flexibility, mood and energy
Mental wellbeing
Stress, anxiety and low mood can accompany chronic illness. Support is available.
Eat well
Aim for a balanced diet built around nutritious, minimally processed foods.
Quit smoking
Talk to your healthcare team about support to quit.
Sleep
Develop a regular sleep routine and discuss persistent sleep problems with your healthcare team.
When something doesn't feel right
Paying attention to changes early can help prevent problems and get the right care sooner.
Symptoms changed?
If you notice new, persistent or worsening symptoms, contact your GP, rheumatologist or treating healthcare team.
Need urgent medical help?
If you are seriously unwell or experiencing a medical emergency, seek urgent medical attention.
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Severe or rapidly worsening symptoms
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Trouble breathing or chest pain
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Sudden weakness, confusion or lost of vision
This information is general and not a substitute for professional medical advice. Always follow the advice of your healthcare team.
Support & next steps
You don't have to manage lupus alone. We're here to support you
Connect with others
Meet people who understand lupus through our support groups and community.
Learn about lupus
Explore reliable information on symptoms, treatment, diagnosis and living well.
Newly diagnosed?
Start with our guide to the first months after diagnosis and what to expect.
Need help with costs?
Explore options that may help reduce the cost of appointment, medications and tests.
We are here for you
If you can't find what you're looking for, please contact us. Our team is here to help.