Difficulties in diagnosing Lupus delay treatment and motivate national campaign

• “Not even with a magnifying glass can you unravel the mystery” is the motto of the campaign, which aims to raise awareness and inform;
• It is estimated that Lupus, an autoimmune disease^twoaffects around 10,000 people in Portugal³

Lisbon, May 10, 2024 – There are several signs by which Lupus disease manifests itself over time: from fatigue to fever, joint pain, skin manifestations, involvement of other organs such as the kidney, heart and even hematological involvement. Symptoms that, confirms José Alves, member of the Portuguese Society of Internal Medicine (SPMI) and president of NEDAI (Autoimmune Diseases Study Center), can not only be very varied, but also different depending on the patient.¹since, “for reasons that are not yet completely known, the disease does not always have the same characteristics and the severity can be very different”^two. Scenario that does not make diagnosis and, therefore, treatment easy¹ and which serves as the motto for the campaign “Not even with LUPA can you unravel the mystery”, an initiative of the Association of Patients with Lupus, Portuguese League Against Rheumatic Diseases (LPCDR), Portuguese Association of General and Family Medicine (APMGF), Portuguese Society of Internal Medicine (SPMI), Portuguese Society of Nephrology (SPN), Portuguese Society of Rheumatology (SPR), National Pharmacy Association (ANF) and AstraZeneca.

As explained by António Vilar, president of the Portuguese Society of Rheumatology (SPR), it is “a multifactorial disease with systemic expression, that is, it can affect several organs and systems, meaning that the symptoms vary greatly over time.⁴ and treatment⁷”. And that poses several challenges to patients, says Filipa Branco, member of the Association of Patients with Lupus, “starting with the diagnosis⁴. If the diagnosis is not timely, months or years of therapy are lost that could prevent irreversible damage to organs, such as the kidneys, heart or lungs. Adherence to therapy is another challenge that requires good health literacy on the part of the patient.⁶. Then, we have the challenges of day-to-day life and managing the disease, particularly with regard to its most debilitating symptoms, such as pain and extreme fatigue.

A problem that, adds José Alves, can be disabling: “most people with this disease can have very disabling symptoms and, therefore, have a major impact on their personal, social and professional lives.⁵”, therefore, he adds, “the financial aspects of abstaining from work due to limitation or incapacity must be considered⁴ and direct expenses for consultations, exams and medications^two. All of this is associated with the fact that the disease, often affecting younger people, ends up compromising their quality of life very early on, which implies a much longer period of living with Lupus, with all the resulting consequences”

In our country, the frequency was estimated, explains António Vilar, using an epidemiological study of SPR, “at 0.1%, which would represent around 10,000 patients in Portugal”³victims of a problem that “occurs more frequently in young women of childbearing age”⁴. And it is still of “unknown causes, but which are due to a complex interaction between genetic, environmental and hormonal factors that induce a deregulation of our immune system, with the production of antibodies that attack the organs”⁴.

A disease with “multiple facets, both from a clinical and social point of view” that the campaign wants to make known, “allowing a greater number of diagnoses and promoting understanding and support from families and the most diverse institutions for patients with Lupus who need them”, says José Alves

EULAR recommendations with a focus on diagnosis
For health professionals, the challenge of Lupus is to control the disease with a view to achieving remission, or reducing activity in all organ systems, preventing exacerbations and minimizing toxicity associated with treatment.⁷. I challenge that the latest recommendations from European Alliance of Associations for RheumatologyEULAR, aim to provide an answer, with emphasis on the fundamental principles that aim for an individualized approach to the patient and frequent assessment with pharmacological and non-pharmacological interventions

Developed under the direction of a task force A global team of around 40 experts from Europe, America, Asia and Australia, the recommendations share guidelines that reflect new understandings and new treatment options, with a focus on timely diagnosis, optimization of treatment and rapid initiation of treatment.

Overall, 13 recommendations and 5 principles were developed, which reinforce the need for multidisciplinary and individualized management, together with patient education and shared decision-making, highlighting that non-pharmacological interventions can have an impact and improve long-term results. term and highlight the importance of early diagnosis and immediate treatment, essential to prevent crises and organ damage, as well as to improve long-term results and quality of life.

1. Bruce IN, et al. Lupus science & medicine. 2023;10(1): e000856.
2. Pons-Estel GJ, et al. Arthritis Rheum. 2009; 61(6): 830–839;
3. Branco JC, et al. RMD Open 2016;2:e000166.
4. Kaul A, et al. Nat Rev Dis Primers. 2016;2:16039;
5. Kawka L, et al. Journal of clinical medicine. 2021;10(17): 3996;
6. Piga M & Arnaud L J Clin Med 2021;10(2):243;
7. Fanouriakis A, et al. Ann Rheum Dis. 2024;83(1):15-29.

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