Lupus: The Expert Series

In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on managing lupus when access to a rheumatologist is limited, including regular testing, medication management, telehealth, and self-advocacy. Our guest, Dr. Candace Feldman, shares how people living with lupus can document symptoms, prepare for appointments, communicate medication concerns, and use healthcare resources effectively while staying engaged in their ongoing care.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

This episode will help you understand:

• Diagnosis delays and access issues in lupus care
• How to prioritize symptom monitoring and documentation
• The importance of medication adherence and management
• The role of telehealth in ongoing lupus management
• Self-advocacy and patient-provider communication

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• American College of Rheumatology: https://rheumatology.org/
• Arthritis Foundation: https://www.arthritis.org/

In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on GLP-1 Therapies and Lupus. Our guest, Dr. Paul Hoover, discusses what we know about obesity and its impact on people living with lupus, how GLP-1 therapies work, and what researchers are learning about their potential role in lupus and related health outcomes.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

Episode Takeaways:

• Why obesity is an important consideration for people living with lupus
• What we currently understand about the relationship between obesity and lupus outcomes
• How GLP-1 therapies work and why researchers are interested in their potential role in lupus
• What is known—and what remains unknown—about the potential effects of GLP-1 therapies beyond weight loss, including blood sugar and kidney health
• What people living with lupus should know when considering GLP-1 therapies and discussing them with their healthcare team

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• Research Accelerated by You (LFA): https://www.lupus.org/research/enroll-in-a-lupus-registry

En este episodio de la Serie de Expertos de la Fundación de Lupus de América, nos centramos en el impacto del lupus en los riñones. Nuestro invitado, el Dr. Juan Manuel Mejía-Vilet, responde a nuestras preguntas sobre cómo la inflamación causada por el lupus puede afectar a los riñones. También explica qué es la nefritis lúpica, cómo se diagnostica y se trata, y ofrece recomendaciones para mantener una buena salud renal.

Regístrate para recibir correos electrónicos de la Fundación de Lupus de América (LFA) cuando se publiquen nuevos episodios: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html?s_src=lupus.org&s_subsrc=TES_s9e6

Conclusiones:

• Cuando hay actividad de lupus, los riñones se pueden inflamar.
• Aproximadamente de 5 a 6 de cada 10 personas con lupus experimentaran inflamación de los riñones, comúnmente dentro de los primeros meses o años de la enfermedad.
• El diagnóstico temprano, por la vigilancia del funcionamiento y daño a los riñones por parte del médico y del paciente, es muy importante.
• En etapas tempranas la nefritis lúpica no es detectable. La vigilancia constante es necesaria para detectar problemas temprano.
• Los tratamientos van dirigidos a controlar el sistema inmune con intensidad (en la primera etapa). En los últimos años los medicamentos son más dirigidos y bajan menos las defensas. La dialysis o un trasplante renal también pueden ser opciones de tratamiento.
• El conocimiento de la enfermedad también es importante para saber cómo puede afectar la enfermedad y poder reconocer cualquier cambio a cualquier nivel.

Recursos relacionados:

• Pregúntele a una educadora de la salud: https://www.lupus.org/es/care-support/ask-a-health-educator
• El Centro Nacional de Recursos sobre el Lupus: https://www.lupus.org/es/resources
• El lupus y los riñones: https://www.lupus.org/es/resources/como-afecta-el-lupus-al-sistema-renal-los-rinones
• Encuentra apoyo cerca de ti (en inglés): https://www.lupus.org/es/support-groups
• Nuevas directrices para el tratamiento del lupus (en inglés): https://rheumatology.org/press-releases/new-lupus-sle-clinical-practice-guidelines-released

In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on what to know when preparing for surgery when you have lupus, including questions to ask your surgeon before the procedure and tips for coordinating between your surgeon and rheumatologist. Our guest speaker, Dr. Susan Goodman, walks us through how lupus affects surgical preparation, medication management, recovery information for patients and care partners, and highlights the importance of personalized care and risk mitigation.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

This episode will help you understand:

• Differences in surgical preparation for people with lupus
• Pre-surgical assessments and risk mitigation strategies
• How lupus medications can affect surgery and recovery
• Risks of infection and vascular complications
• The importance of nutrition, exercise, and stress management during recovery
• How to recognize signs of a lupus flare versus normal post-surgical recovery

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• Preparing for Surgery When You Have Lupus (LFA): https://www.lupus.org/resources/preparing-for-surgery-when-you-have-lupus

En este episodio de la Serie de Expertos de la Fundación de Lupus de América, nos centramos en las nuevas guías de tratamiento para el lupus eritematoso sistémico (LES) publicadas por el Colegio Americano de Reumatología (American College of Rheumatology). Nuestro invitado, el Dr. Jorge Sánchez-Guerrero, explica la importancia de estas guías para ofrecer recomendaciones basadas en evidencia orientadas a una atención personalizada del paciente, así como el proceso de elaboración y actualización de dichas guías y los cambios clave que priorizan un control óptimo de la enfermedad y la reducción del uso prolongado de corticosteroides. El Dr. Sánchez-Guerrero destaca la necesidad de la participación activa del paciente y de una buena comunicación con los profesionales de la salud para garantizar un manejo eficaz del lupus.

Regístrate para recibir correos electrónicos de la Fundación de Lupus de América (LFA) cuando se publiquen nuevos episodios (en inglés): https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html?s_src=lupus.org&s_subsrc=TES_s9e4

Conclusiones:

• Las nuevas directrices sobre el lupus hacen hincapié en lograr la remisión de la enfermedad y reducir el uso de esteroides para prevenir efectos secundarios irreversibles.
• Las directrices de tratamiento son recomendaciones, no obligaciones, y respaldan — en lugar de sustituir — el criterio clínico de su médico.
• El tratamiento debe adaptarse a las necesidades individuales del paciente y a las manifestaciones de la enfermedad.
• Las terapias biológicas e inmunosupresoras pueden ayudar a controlar la actividad de la enfermedad.
• La comunicación abierta y la participación activa del paciente son fundamentales para tomar decisiones eficaces sobre el tratamiento.

Recursos relacionados:

• Pregúntele a una educadora de la salud: https://www.lupus.org/es/care-support/ask-a-health-educator
• El Centro Nacional de Recursos sobre el Lupus: https://www.lupus.org/es/resources
• Encuentra apoyo cerca de ti (en inglés): https://www.lupus.org/es/support-groups
• Nuevas directrices para el tratamiento del lupus (en inglés): https://rheumatology.org/press-releases/new-lupus-sle-clinical-practice-guidelines-released

In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on how steroids are an essential and often life-saving treatment for people with lupus, even though the new SLE guidelines recommend using them as little as possible. Our guest speaker, Dr. Megan Lockwood, walks us through why steroids play such a critical role in lupus care, the potential risks and downsides of prolonged use and why limiting their use whenever possible is equally important. We also discuss how patients can work with their health care providers to develop a thoughtful, personalized steroid plan and have productive conversations with their doctors about managing steroid treatment.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

This episode will help you understand:

• How steroid mechanism of action
• The importance of minimizing steroid use
• Short and long-term side effects of steroids
• Alternatives to steroids in lupus treatment
• Safe steroid tapering strategies
• Future treatments and research developments

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• Medications Used to Treat Lupus (LFA): https://www.lupus.org/resources/medications-used-to-treat-lupus

In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Nicoleta Skoufalos discusses lessons from her new book, Understanding Autoimmune Disease: A Therapist's Guide to Invisible Illness. This conversation focuses on the emotional and psychological impact of living with autoimmune diseases like lupus. Topics include loss of identity, trauma, finding the right mental health support, and strategies for integrating illness into one's sense of self.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

Episode Takeaways:

• Autoimmune disease can disrupt identity and strain personal relationships
• Misdiagnosis and medical gaslighting often create lasting emotional trauma
• Accessing the right mental health support is essential for autoimmune patients
• Clear communication strategies help others better understand invisible illnesses
• Rebuilding identity and discovering new meaning is a key part of life after diagnosis

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• Understanding Autoimmune Disease: A Therapist's Guide to Invisible Illness: https://www.penguinrandomhouse.com/books/807102/understanding-autoimmune-disease-by-nicoletta-skoufalos-preface-by-cristina-dorazio-phd-foreword-by-sue-gloor/
• Managing Your Mental Health with Lupus (LFA): https://www.lupus.org/resources/lupus-and-depression-know-the-signs-and-how-to-get-help

In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Cindy Aranow discusses the newly released American College of Rheumatology treatment guidelines for systemic lupus erythematosus (SLE). She explains the importance of these guidelines in providing evidence-based recommendations for individualized patient care, the process of developing and updating the guidelines and key changes that emphasize optimal disease control and reducing long-term steroid use. Dr. Aranow highlights the need for patient engagement and communication with health care providers to ensure effective management of lupus.

This episode of The Expert Series was sponsored by AstraZeneca. The Lupus Foundation of America would like to thank AstraZeneca for their support of education programs for people with lupus.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

Episode Takeaways:

• Treatment guidelines are recommendations, not mandates, and support - not replace - your doctor’s clinical judgment.
• Lupus is a highly individualized disease, so care must be tailored to each person.
• A diverse group of experts develops and regularly updates guidelines based on new research.
• Guidelines help clinicians navigate complex and evolving medical evidence.
• Recent guidelines emphasize achieving remission or low disease activity while reducing long-term steroid use.
• Open communication and active patient involvement are essential for effective treatment decisions.

Related Resources:

• Ask a Lupus Health Educator (LFA): https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You (LFA): https://www.lupus.org/resources/find-support-near-you
• National Resource Center on Lupus (LFA): https://www.lupus.org/resources
• The Expert Series (LFA): https://www.lupus.org/resources/lupus-the-expert-series
• New Lupus Treatment Guidelines (ACR): https://rheumatology.org/press-releases/new-lupus-sle-clinical-practice-guidelines-released

In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Amit Saxena dives into why vaccines are such a powerful tool for people living with lupus. Since lupus and some of its treatments can weaken the immune system, getting the right vaccines can make a big difference in staying healthy and preventing serious infections. Dr. Saxena also breaks down which vaccines are most important and how lupus medications can impact their effectiveness.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

Episode Takeaways:

• Vaccines help protect people with lupus from serious infections, which can be harder for them to fight off.
• Getting the flu, COVID-19, and shingles vaccines is especially important.
• Some lupus medications might need to be paused before getting certain vaccines, so make sure to talk to your doctor first.
• While side effects can sometimes feel stronger, vaccines are generally safe and effective for people with lupus.
• Adults with lupus may also need booster shots or updated versions of vaccines they received as kids.

Related Resources:

• Ask a Lupus Health Educator: https://www.lupus.org/care-support/ask-a-health-educator
• Find Support Near You: https://www.lupus.org/resources/find-support-near-you
• Be Prepared to Fight Flu and COVID this Winter: https://www.lupus.org/blog/be-prepared-to-fight-flu-and-covid-this-winter
• Lupus and Vaccines: https://www.lupus.org/resources/lupus-and-vaccines
• National Resource Center on Lupus: https://www.lupus.org/resources
• The Expert Series: https://www.lupus.org/resources/lupus-the-expert-series

En este episodio de La Serie de Expertos, el pódcast de la Fundación de Lupus de América, la Dra. Olga Kromo analiza las complejidades del lupus y su impacto en el manejo del dolor. Aborda los distintos tipos de dolor, las opciones de tratamiento y la carga emocional que conlleva el dolor crónico. Destaca la importancia de comprender el origen del dolor, mantener una comunicación clara con los profesionales de la salud y contar con una atención integral. Asimismo, resalta la relación entre el dolor y la fatiga, el papel de la alimentación y las investigaciones futuras que ofrecen tratamientos prometedores.

This episode is also available in English. Listen here: https://open.spotify.com/episode/0bJcmfMlrSJno9EtoYbBYW

Regístrese para recibir correos electrónicos de la Fundación de Lupus de América (LFA) cuando se publiquen nuevos episodios: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html (en inglés)

Conclusiones:

• El lupus es una enfermedad compleja que causa inflamación y diferentes tipos de dolor.
• El dolor crónico y la fatiga pueden afectar de manera significativa la vida diaria, el bienestar emocional y la salud mental.
• El manejo del dolor a menudo requiere medicamentos, cambios en el estilo de vida y técnicas de reducción del estrés.
• La alimentación desempeña un papel importante en el manejo de los síntomas del lupus.
• La comunicación clara con los profesionales de la salud y el seguimiento de los síntomas son fundamentales para una atención eficaz.
• Las redes de apoyo, la educación y la investigación en curso ofrecen esperanza de tratamientos mejorados y futuros avances.