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).
Dragon Claw’s own Dr Charmaine Jones was the driving force behind the need for a tool for people living with autoimmune conditions – a tool to their own symptoms and test results to empower them to be a more active participant in their own treatment plan. Being able to show your medical practitioner a picture over time, to be able to better advocate for themselves. In this episode, rheumatologist Dr Daniel Lewis talks to us about the benefits of using a tool like this to help identify if medication is working for you, or if you need an adjustment.
