Lupus is a challenge, with doctors and patients facing an ongoing battle to manage this chronic, life-threatening condition. So, to understand it better we recently explored lupus management in a global survey of more than 500 specialist lupus doctors (mainly rheumatologists) and patients.
There is a difficult balance to achieve when managing lupus – how to reduce the ‘activity’ and long-term impact of the disease while minimizing damage from the toxicity and side-effects of some standard treatments used in lupus, such as steroids.
Lupus is a challenge. A challenge to live with, a challenge to diagnose, a challenge to understand, a challenge to manage.”
With lupus, your body is its own worst enemy: it attacks itself without warning.
In the more severe cases, like a smouldering volcano, an immuno-inflammation eruption can cause crippling fatigue and over time, irreversible damage to organs in the body. Half of all lupus patients will have irreversible organ damage within five years of being diagnosed.
Steroid medications work quickly to lessen the immediate symptoms of the immune system’s response, by decreasing the swelling, warmth, tenderness and pain that are associated with inflammation. However, they can have serious long-term side effects and are themselves associated with organ damage, the risk of which increases with higher doses and longer-term therapy.
Despite these known risks, when asked about their prescribing habits and attitudes towards steroid usage, most doctors in the survey accepted doses far exceeding what is normally recommended in clinical practice.
said they did not plan to alter their future steroid use
61%expected to increase it in patients with persistently active lupus
8%Reflecting the results shown above, more than a third (37%) of doctors surveyed did not agree that long-term management of lupus was as important as treating immediate symptoms of the disease.
Our survey also revealed the extent to which lupus patients self-manage their steroid medication, with more than half of patients (53%) stating that they rely heavily on steroids to get through difficult periods of the disease.
Approximately a third of patients reported upping their oral steroid dosage and frequency without the consent of their doctors – on average as many as six times per year.
Doctors underestimated the scale of patients’ self-management - predicting that only 15-20% of their patients independently increased steroid dose or frequency.
Results from the survey highlight an opportunity for increased awareness around long-term impact of the disease and appropriate use of steroids in lupus management.
“It’s a very difficult balance to achieve. The survey suggests that both doctors and their patients are often focusing on the short-term solutions and not the longer-term prevention of lupus damage. In fact, 69% of patients did not believe their doctors went beyond treating symptoms to fully manage all aspects of their lupus,” said Dr Alex Liakos, a physician and part of the Global Medical Affairs team at GSK
Results from our survey suggest that taking a more holistic, proactive approach to treating lupus would improve the overall outcomes for people with the disease.”
We’re committed to supporting and working alongside the lupus community to delve deeper into the challenges that surround the disease and broaden our understanding of this complex condition. We’re continually gathering insights that will help inform our scientific research and development of educative tools, as we play our part in the strive towards the biggest challenge that has so far alluded lupus – finding a cure.
EnABLE (Exploration iNto Attitudes and Behaviour in the Lupus Experience) is a major multi-country survey of attitudes and behaviours among patients with SLE and healthcare professionals (HCPs) who treat the condition, supported by GSK.
Find out more about the survey and findings.
We have prepared several patient-focused resources called ‘Living with Lupus’ and USinLupus.com, designed to educate and equip the lupus community with the relevant tools to take a more holistic approach to disease management.
