In 2024 Dragon Claw took on a research project in partnership with Community and Patient Preference Research (CaPPRe) with a purpose of exploring why so many people in the autoimmune community today still continued to have severe symptoms, despite there being new treatment options available to them.
Research project in partnership with Community and Patient Preference Research (CaPPRe).
Our Findings
What we learned is that 45% of the participants knew nothing about biologics, 56% of them knew nothing about JAKi’s, 34% of them were on the same medications and dosages over the past year (despite them reporting moderate-high disease burden), and that 52% of them believed there were no further treatment options available, other than what they’d used before.
What are JAK Inhibitors and Biologics?
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 (JAK) signals inside immune cells, helping to reduce inflammation caused by an overactive immune system in autoimmune conditions.
The importance of our findings
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 re-assessments and adjustments in medication, if necessary, to keep any inflammation under control. Blood tests can track important markers of inflammation, immune activity, and how well your medications are working. Depending on your condition and the medication that has been prescribed, 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.
Remission
Eventually, we’d all like to get our autoimmune condition into remission, but it’s important to know that it’s not considered ‘a cure’. You can be in remission while still on medication, and it is when no symptoms or signs of inflammation show 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.
We created My Numbers Tool
We designed this tool to help you and your healthcare provider identify if your treatment is working for you. Communication is easier when you can show that you have tracked your symptoms and test results, making it easy to advocate for yourself for any adjustments to your treatment plan – including identifying if your current medication is working for you. Any unchecked symptoms of inflammation can be missed if the numbers in your test results are fine,or if you don’t experience any symptoms, so looking at either of these in in isolation can result in your condition not being optimally controlled.
What is the My Numbers Tool?
Having the right tests done can bring you closer to the right medications, and there are many more available today. Use this tool to track your tests results and symptoms to help reveal any patterns, which can be useful to your treatment plan.
Know Your Numbers is proudly endorsed by the
Australian Rheumatology Association (ARA).
