You’re the reason we’re here—with information, understanding, and support that may help you live better with lupus.
Some quick links to help you
What is lupus?
Also known as systemic lupus erythematosus (SLE), lupus reprograms immune cells so they attack the body itself, resulting in chronic inflammation. It can affect the kidneys, joints, skin, brain, and the lining of the heart and lungs. Lupus can be mild or life-threatening.
Risk factors for developing lupus
The triggers for lupus are poorly understood. Some factors that are associated with developing lupus are:
- Being female: 90 per cent of Australians with lupus are women.
- Early adulthood: most cases of lupus are detected in people aged between 15 and 40.
- Genetic susceptibility: lupus is more prevalent in some families and some racial groups. Lupus is more prevalent and more severe in Aboriginal Australians than in the wider Australian population.
- Sunlight exposure can be a trigger in susceptible people.
1 in 1,000
Lupus is estimated to affect more than 25,000 (1 in 1,000) people in Australia
Onset usually occurs between 15 and 45 years
90% of those affected are women
Coping and support
If you have lupus, you’re likely to have a range of painful feelings about your condition, from fear to extreme frustration. The challenges of living with lupus increase your risk of depression and related mental health problems, such as anxiety, stress and low self-esteem. Stress is a reaction to a situation where a person feels threatened or anxious. Learning healthy ways to cope and getting the right care and support can help reduce stressful feelings and symptoms.
To help you cope with lupus, try to:
Learn all you can about lupus. Write down any questions you have about lupus as they occur to you so that you can ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you’ll feel in your treatment choices.
Gather support among your friends and family. Talk about lupus with your friends and family and explain ways they can help out when you’re having flares. Lupus can be frustrating for your loved ones because they usually can’t see it, and you may not appear sick. Family and friends can’t tell if you’re having a good day or a bad day unless you tell them. Be open about what you’re feeling so that your loved ones know what to expect.
Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you. Self care is important, lots of sleep up to 12 hours and try not to stress keep your mind occupied.
Raise Awareness and Funds
Please follow this link to see the latest events:
Lupus Fundraising BBQ
Lemonade for Lupus
Fundraise Your Way
Plan your own fundraising event and make your mark on the lupus community.
Lupus Australia welcomes and encourages the support of individuals and companies who wish to support our mission through their own fundraising initiatives. Your fundraising event should support or enhance the image of Lupus Australia and provide an opportunity for positive exposure and increased public awareness of Lupus Australia while raising funds for those living with lupus.
For more information please email us at firstname.lastname@example.org
Together We Can Make A Difference!
Updated 22nd September 2021
We are in the process of gathering some of the most common COVID-19 vaccine questions that have been asked. There is still a lot that we don’t know about the vaccines that are being studied and developed to prevent COVID-19. Currently there are two vaccines made by different companies that have been approved by the TGA in Australia.
We are closely monitoring the TGA’s approval process and latest research, along with that in the US and UK so that we can keep you informed. We will update this page as new information becomes available.
You and your doctor should decide together if the vaccine is right for you and, if so, which one. Now more than ever it is important to have a health care team that you trust.
Some Frequently asked Questions – Click on one of the questions below
Which COVID-19 vaccines are approved for use in Australia?
The TGA (Therapeutic Goods Administration) has approved 2 vaccines for use in Australia, the:
This means that these vaccines have met the TGA’s rigorous standards for safety, quality and efficacy. It will be free to all Australian residents.
You can view a list of vaccines that have submitted applications to the TGA.
Am I at risk because of my lupus?
Coronavirus (COVID-19) is still a relatively new disease and scientists are continuing to learn about risk factors for severe infection. Based on current information, there are a range of characteristics that can put someone at greater risk of severe disease from the virus. The groups at most risk appear to be older adults and people of any age who have certain underlying medical conditions.
Systemic lupus erythematosus (SLE or lupus) is a disease which can vary a lot in how it presents and the types of treatment needed. As such, some people with lupus are likely to be more vulnerable to the virus than others.
People with chronic inflammatory conditions requiring medical treatments, including systemic lupus erythematosus, are considered a high priority group, however it is important for individuals to attend their usual GP to ensure they are given proprity.
Is the COVID-19 vaccine safe for people with lupus?
Any coronavirus vaccine that is approved must go through all the clinical trials and safety checks all other licensed medicines go through. Australia has some of the highest safety standards in the world.
Tens-of-thousands of people have been given a COVID-19 vaccine in clinical trials (whilst significantly larger numbers of people have now also received their first dose of the vaccine. The risk of severe effects from a COVID-19 vaccine is tiny when compared with the risk of getting ill from COVID-19. It’s also important to realise that vaccine safety monitoring picks up any serious illness somebody might experience after having a vaccine, but this doesn’t mean the vaccine caused it.
There is currently no evidence to suggest that people with a diagnosis of lupus should not be administered the COVID-19 vaccines. However, the clinical trials for the vaccines primarily recruited healthy volunteers, therefore at present, we have limited evidence about the effect of the vaccines in people with health conditions such as lupus. Researchers are studying the safety and efficacy of the vaccines in people with lupus during the rollout, so our understanding will improve significantly over time
Will my lupus medications affect how the vaccine works?
In general, lupus medications will not affect how the vaccine works. In some cases, particularly for those who take powerful immunosuppressant drugs, your doctor may have special instructions for you so that you can get the greatest possible benefit from the vaccine. Please check with your doctor about how the vaccine fits into your treatment plan.
Should I temporarily stop my medication when I have the vaccine?
There is currently no evidence available to make a firm recommendation in this area.
The COVID-19 vaccine requires two doses which are administered three to twelve weeks apart. This would require a significant pause to treatment as a result and therefore it is unlikely to be recommended due to the risk of lupus flares.
Advice may vary on a case-by-case basis to maximise the chance of effect from the vaccine whilst managing lupus disease activity. It is important to discuss the timing of your vaccine with your consultant if you are due to have an infusion of rituximab.
Should I still attend medical appointments?
Untreated or undertreated lupus can be serious. It is important that you continue to be treated and monitored appropriately throughout the pandemic and that you seek medical advice if you are concerned about your disease.
If you have a scheduled medical appointment then it is very important for you to attend.
It is very important for you to contact your GP or rheumatology team if you are experiencing a worsening of your disease. By avoiding medical care you could increase your risk of a serious lupus flare.
If you are anxious about attending an important appointment, please discuss with them the precautionary measures they have in place, to reassure you. Many hospitals have a separate rheumatology department where patients can be seen, rather than having to attend the main outpatient’s department.
If you are concerned about your lupus, by contacting your rheumatology team it won’t necessarily result in an automatic face-to-face appointment. Clinicians may initially assist remotely, where this is appropriate, through TeleHealth.
Do any of the COVID-19 vaccines authorized for use in Australia shed or release any of their components?
No. Vaccine shedding is the term used to describe the release or discharge of any of the vaccine components in or outside of the body. Vaccine shedding can only occur when a vaccine contains a weakened version of the virus. None of the vaccines authorized for use in Australia contain a live virus.
The mRNA and viral vector vaccines are the two types of currently authorized COVID-19 vaccines available.
Can I get COVID-19 from the vaccine?
No. It is not possible to get COVID-19 from any of the vaccines that have been approved or are currently being reviewed by the TGA.
How has the COVID-19 Pandemic Affected You?
We are looking for individuals with lupus who are happy to share their experience of how the COVID-19 pandemic has affected their mental and physical wellbeing.
Things we would like you to consider when sharing your experiences are:
– Did the pandemic make you give up or change your job?
– Did the pandemic delay/stop you from receiving any treatment?
– Did self-isolating/shielding exacerbate any of your symptoms?
– Did you gain any positive experiences whilst being in lockdown?
If you would like to share your experience and be a part of our Lupus Awareness Month campaign, send in a video (2-5 minutes) talking about your experience or write an A4 page article with pictures and send it to email@example.com
General Information – COVID-19 vaccines – Is it true?
With new COVID-19 vaccine developments every day, it’s normal to have questions or concerns, and possibly feel hesitant about getting a vaccine. That’s why the Department of Health has provided accurate, evidence-based answers to questions about COVID-19 vaccines. Find out more.
The Lupus Association of NSW site is for informational purposes only and should not be a substitute for professional medical advice, examination, diagnosis or treatment. However, do not delay seeking or disregard medical advice based on information on this site. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. Medical information changes rapidly and while the Lupus Association of NSW make efforts to continually update the content on the site, some information may be out of date.