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).
Autoimmune flares don’t happen ‘out of the blue’, even when it feels like it. Epigenetics can help explain why. Think of it as the way your environment and experiences like stress, infections, sleep, hormones, diet, even medications can switch certain immune genes on or off, without changing your DNA itself. In RA, these switches can turn up inflammation, making joints suddenly hurt, swell, or stiffen.
Exercise Physiologist, Sarah Comensoli, talks about the benefits of resistance training for rheumatic and autoimmune conditions. Tailored programs are important for people with autoimmune conditions, and should take any conditions you have into account, as it can make a difference on whether you continue with your goals, or give up too soon.
Depression is common in autoimmune conditions, and it’s not a personal failing or ‘just feeling low’ says Dr Robin Murray, a neuropsychologist. Chronic inflammation, pain, fatigue, and the unpredictability of symptoms all place real strain on both your body and your mind. Inflammation itself can affect your brain chemistry, which means depression can be part of the condition – not just a reaction to it.
Depression is common in autoimmune conditions, and it’s not a personal failing or ‘just feeling low’ says Dr Robin Murray, a neuropsychologist. Chronic inflammation, pain, fatigue, and the unpredictability of symptoms all place real strain on both your body and your mind. Inflammation itself can affect your brain chemistry, which means depression can be part of the condition – not just a reaction to it.
