Melinda Barrett shares her deeply personal story of living with Lupus. From health challenges that began at a young age to the many connected autoimmune conditions she has been diagnosed with, Melinda speaks with honesty, humour, and wisdom about what it means to live with Lupus.
She describes herself as the ‘luckiest unlucky person’ she knows, and acknowledges both the difficulties and sources of gratitude in her life, which she candidly refers to as a beautifully messy human chaotic story.
Melinda’s story is a testament to her strength and resilience, summed up in her powerful words: ‘We don’t fight lupus, we negotiate it’.
After MyFlareUp’s research project with Community and Patient Preference Research (CaPPRe) in 2024 found some alarming stats, we needed to explore why so many people in the autoimmune community today still continued to have severe symptoms, despite there being new treatment options available.
We discovered that of the participants surveyed, 45% of them knew nothing about biologics and 56% of them knew nothing about JAKi’s – and 34% of participants were on the same medications and dosages over the past year, despite them reporting moderate to high disease burden. We also found that 52% of participants believed there were no further treatment options available to them, other than what they’d used before.
What are Biologics and JAK Inhibitors?
Biologics is a protein-based medicine made from living cells that target specific parts of the immune system and because it’s a protein, it needs to be kept cool and is usually given by injection. JAK inhibitors (JAKis) is a tablet medicine that blocks Janus kinase signals inside immune cells, helping to reduce inflammation caused by an overactive immune system
Why is Medication Stagnation alarming?
Simply put, because unchecked chronic inflammation can lead to many long-term adverse outcomes, like joint destruction and kidney damage, which is precisely why people with autoimmune conditions need frequent reassessments, and adjustments in medication if necessary, to keep any inflammation under control.
How can you reassess?
Blood tests can track important markers of inflammation, immune activity, and importantly, how well your medications are working. Depending on your condition and the medication that has been prescribed for you, imaging may also be done to check how organs like your kidneys, liver, lungs, or heart are functioning. These tests can help identify changes early, before they escalate.
We designed a Monitoring Tool to help you track
We designed a tool to help you and your healthcare provider identify if your treatment is working. This tool can help make communication easier when you show that you have tracked your symptoms and test results, making it easier to advocate for yourself for any adjustments to you need to your treatment plan. Some adjustments can be like being able to identify if your current medication is working for you.
Remember, any unchecked symptoms of inflammation can be missed when the numbers in your test results seem fine, or when you don’t experience any symptoms – which is why looking at either of these in in isolation can result in your condition not being optimally controlled. Some monitoring goals can be to:
- detect early flares;
- detect any disease progression;
- monitor any organ involvement (kidneys, central nervous system (CNS), skin, lungs and cardiovascular system);
- evaluate effectiveness and safety of your treatment;
- screen for any comorbidities and complications;
- maintain low disease activity;
- to try get into remission.
What is Remission?
Eventually, we’d all like to get our autoimmune condition into remission, but it’s important to know that remission is not considered ‘a cure’. You can be in remission while still on medication, and is when no symptoms or signs of inflammation shows up in your medical or physical tests. You are in remission when you have no symptoms and there are no signs of inflammation in your medical tests or physical examinations. Remission is now recognized by experts around the world as an achievable and meaningful goal for people with autoimmune conditions.
Your Role
Every person with an autoimmune condition trying to manage symptoms should take the time to track symptoms, flare patterns and energy levels. Doing so while also learning to identify triggers will help you build a picture over time. It can be challenging to explain your symptoms to your doctor in a short visit, but being able to show a picture over time can help you play a role in your treatment plan, and being an active passenger in this journey is very important.
Lastly, it’s important to realise that with autoimmune conditions, there is no one-size-fits-all. Regularly communicating with your healthcare provider and clearly clarifying your goals can be an enormous benefit to your treatment plan.
Download the My Numbers Tool below to help you on your journey.
My Numbers Tool
Use this tool to track your tests results and symptoms to help reveal any patterns, which can be useful to advocate for any changes to your treatment plan. This tool was designed to make communication easier with your doctor by showing you have tracked your symptoms and recorded your test results. My Numbers Tool is proudly endorsed by the Australian Rheumatology Association (ARA).
Will Gregory, a consultant physiotherapist and vice-president of British Rheumatology Society, is an expert clinician in the world of rheumatology. He talks about the importance of keeping physically active when you have an inflammatory condition.
We talk about kidney health and the impact on Lupus. Amanda shares her personal Lupus story and then we hear from Stephen Cornish from Lupus Health Australia, who talks about the importance of support on your journey.
We talk about kidney health and the impact on Lupus. Amanda shares her personal Lupus story and then we hear from Stephen Cornish from Lupus Health Australia, who talks about the importance of support on your journey.
This is a recording of one of our Australian’s Dragon Talks sessions.
Zali McPherson is in her early twenties, and shares her story with Lupus. Looking back, Zali realised her symptoms actually started as young as 8-years old, but growing up in four different countries at the time didn’t make it easy for her to develop a relationship with a fixed primary healthcare provider. Finally at 17-years old and back in Australia, she pushed to find out the cause of her ongoing fatigue and recent back pain. It was no easy feat finding a GP to take her seriously – most dismissed her, she was a teenager after all. Zali knew something wasn’t right, though. One day at a physiotherapist appointment for her back pain, she was asked about her intermittent joint pain and that’s when she got the idea to be tested for Rheumatoid Arthritis. The very next day she found a GP that agreed to test for RA, and at 18-years old Zali finally got her Lupus diagnosis. Advocating for yourself to be taken seriously is hard enough – let alone at such a young age. Zali’s story is truly inspirational and an important one for people still on the journey to getting a diagnosis.
Do you know the difference between Rheumatoid Arthritis and Lupus? Rosemary Ainley, Advocacy Manager and Senior Editor of Creakyjoints Australia, and Naomi Creek, National Coordinator of Global Healthy Living Foundation, share their experience to discuss the differences in Lupus and RA symptoms and diagnosis.
Julie shares her personal story of resilience, struggle and perseverance with Lupus. She has Systemic Lupus, Cutaneous Lupus and CNS Lupus. Julie was one of the first patients in Australia to receive the new Lupus treatment at the time, Anifrolumab. She talks about her journey on the treatment and shares her optimism with the results, and hope for people battling autoimmune conditions.
This is Andrew’s Lupus story. He talks about his symptoms and the emotional journey he’s taken, and where he is today.
Rheumatoid Arthritis (RA) and Lupus
Rheumatoid Arthritis (RA) and Lupus are really big diseases that can affect any part of the body. Eating vegetables and fruit help your body with nutrition, and gentle stretching and walking everyday is really important. Most importantly take your medication every single day, even if you feel better. It’s important to continue taking them as your doctor said, without any breaks or stopping entirely.
Rheumatoid arthritis hurts. It hurts sitting with friends, it hurts walking, and it can hurt even when resting. Help your community by taking your tablets, not just once or twice, but everyday or as the doctor told you to take them. It’s important to take the tablets everyday even when you feel better, if you want to stay feeling better. If you don’t, you will start to hurt again.
Ann Single (CEO, Patient Voice Initiative) talks to us about the importance of Collective Advocacy at what it means for people with Lupus.
