All Things Angioedema – Learning about angioedema with Dr. Thomas Buttgereit

• When C1 Is Normal: Managing Rare Bradykinin-Mediated Angioedema

  In this episode, Dr. Thomas Buttgereit welcomes Dr. Efrem Eren, immunologist and allergy specialist from the University of Southampton, to discuss practical approaches to diagnosing and treating patients with recurrent angioedema, especially those with normal C1 inhibitor values. They discuss:🔹 How can physicians distinguish histamine- vs. bradykinin-mediated angioedema?  🔹 Why do some patients develop angioedema years after starting ACE inhibitors?  🔹 How can icatibant be used not only as treatment but also as a diagnostic tool?  🔹 What options exist for long-term prophylaxis when standard therapies fail? Dr. Eren shares his clinical framework for approaching difficult cases, including the value of patient education, treatment trials with tranexamic acid or omalizumab, and the growing role of icatibant and kallikrein inhibitors. He also highlights a moving patient story that demonstrates the life-changing impact of correct diagnosis and targeted therapy. Join us for this insightful discussion on how to navigate diagnostic uncertainty, choose treatment strategies, and improve patient outcomes in rare forms of angioedema. Key Learnings from the Episode:Categorization is key: Angioedema can often be grouped into histamine-mediated, mast-cell–bradykinin–mediated, or bradykinin-mediated causes. Diagnostic limitations: Laboratory tools are scarce; bradykinin measurement is not routinely available. Diagnosis often relies on clinical features and treatment response. ACE inhibitor angioedema can appear years after therapy initiation, often requiring a “second hit” to trigger. Treatment trials help guide diagnosis: High-dose antihistamines → mast-cell mediated Steroid responsiveness → mast-cell involvement Omalizumab → effective in some mast-cell angioedema cases Icatibant → valuable for suspected bradykinin-mediated angioedema (also used diagnostically) Tranexamic acid can be effective for some patients with angioedema linked to mast cells. C1 inhibitor concentrate is ineffective in patients with normal C1 levels and function. Patient burden is high, including anxiety, frequent hospital admissions, and restrictions in daily life. Case story: A teenager with unexplained recurrent angioedema gained her independence and normal life back after diagnosis and treatment with icatibant and kallikrein inhibition. Prophylaxis: Kallikrein inhibitors like berotralstat can be used in select patients; responses are typically evaluated over at least 3 months. Objective evidence (photos, symptom scores) is essential for diagnosis and evaluating treatment response. Chapters:00:00 Introduction to Angioedema and Its Challenges02:48 Understanding Angioedema: Types and Diagnosis07:13 Treatment Approaches for Angioedema12:22 Patient Experiences and Impact of Angioedema15:35 Prophylactic Treatments and Future DirectionsDo you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠

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• COVID-19 & Angioedema: Insights from Italy

  In this episode, Thomas welcomes Dr. Riccardo Senter, allergist at the University Hospital of Padova and member of the ITACA Network, to discuss the impact of COVID-19 on patients with bradykinin-mediated angioedema — including both hereditary and acquired C1 inhibitor deficiency forms. They discuss:🔹 How did COVID-19 affect angioedema severity, hospitalization rates, and recovery? 🔹 What does new data from the pan-Italian ITACA registry reveal about patient outcomes? 🔹 How do hereditary and acquired angioedema differ in their response to coronavirus infection? 🔹 What role do patient registries and research networks play in supporting rare disease care? Dr. Senter presents survey data from 15 Italian centers, detailing age, sex, disease severity, and COVID-19 outcomes for 52 angioedema patients treated in early 2021. He explains the differences between hereditary and acquired forms, why registries like ITACA are crucial for building robust knowledge, and how collaboration supports better care for rare disease patients. Join us for an insightful discussion on the realities of COVID-19 in angioedema patients — and how international research efforts can drive advancements in diagnosis, management, and patient support. Key Learnings from the Episode:COVID-19 did not lead to increased mortality in angioedema patients; no deaths occurred in the surveyed group. 8% of hereditary angioedema patients had severe COVID-19 requiring hospitalization, but all recovered. Acquired angioedema patients, despite older age, did not experience severe COVID-19 or complications. The ITACA network enabled collecting robust data across many centers, highlighting the role of registries in rare disease research. The distinction between hereditary (genetic deficiency) and acquired (secondary to other diseases like lymphoma) C1 inhibitor deficiency is crucial for clinicians and patients. Collaborative networks and standardized registries improve care and understanding of rare angioedema forms during pandemics. Chapters 00:00 Introduction to Angioedema and COVID-19 03:35 Understanding HAE and Acquired Angioedema Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠

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• HAE Prodromes: Early Warning Signs & Why They Matter

  In this episode, Thomas welcomes Dr. Mar Guilarte, allergist at Hospital Universitari Vall d’Hebron in Barcelona, to explore an often overlooked topic in HAE care: prodromal signs — the early symptoms that may signal an HAE attack. They discuss:🔹 What are prodromal signs, and how common are they in HAE patients? 🔹 Do patients treat their attacks differently based on these signs? 🔹 How do UK and Spanish patients compare in their treatment decisions? 🔹 Could biomarkers help us distinguish true HAE prodromes? Dr. Guilarte shares findings from her recent research, conducted with HAE patient groups in the UK and Spain, and discusses how early treatment can shorten attack duration and severity. She also explains how signs like erythema marginatum, abdominal discomfort, irritability, and fatigue vary across patients — and why clear definitions, education, and better diagnostic tools are urgently needed. Join us for a thought-provoking discussion on the complexity of HAE prodromes — and how understanding them better can help optimize treatment and outcomes. Key Learnings from the Episode:Prodromes are early signs or symptoms that precede HAE attacks — up to 60–80% of patients report them. Common prodromal symptoms include erythema marginatum, bloating, nausea, abdominal discomfort, irritability, and fatigue. Each patient tends to have consistent prodromes, which can help predict attacks, though subjective symptoms vary widely. Spanish patients tend to treat later than UK patients, possibly due to less specialist guidance or medication access. Treating attacks early reduces duration and severity, but definitions of “early” vary — especially with injectable medications. Oral on-demand therapies may encourage earlier intervention, as they’re easier to carry and administer. Not all prodromes lead to attacks, and the severity of a prodrome does not always predict the severity of the attack. There is a need for biomarkers to help determine whether a prodrome will be followed by an actual HAE attack. Erythema marginatum is the only objective prodrome, but can be confused with urticaria, leading to misdiagnosis. Education of both patients and physicians is critical to recognizing and acting on prodromal signs. Chapters 00:00 Introduction to Angioedema and Prodromal Signs03:13 Understanding Prodromal Signs in HAE04:04 Research Findings on Prodromal Signs05:37 Common Prodromal Signs Reported by Patients07:11 Comparative Analysis of Patient Responses08:43 The Importance of Early Treatment09:00 Challenges in Defining Early Treatment11:23 Unanswered Questions in Prodromal Research13:25 Differentiating Erythema Marginatum and AngioedemaDo you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠

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• HAE in Mexico: Challenges, Progress & Hope

  In this episode, host Thomas Buttgereit speaks with Dr. Francisco Contreras, pediatric allergist and head of the Angioedema Clinic at the National Institute of Pediatrics in Mexico City, about the current challenges and progress in treating hereditary angioedema (HAE) in Mexico. They discuss:🔹 Why is HAE still underdiagnosed in Mexico? 🔹 What testing and treatments are currently available? 🔹 How is access influenced by Mexico’s divided healthcare system? 🔹 What can help improve HAE care for children and rural patients? Dr. Contreras shares his frontline experience treating pediatric patients with HAE and outlines the systemic barriers — from limited awareness among physicians to inconsistent access to diagnostic testing and long-term therapies. He also discusses how national registries, physician training, and patient advocacy are shaping the future of HAE care across Mexico. Join us for an honest, informative conversation about improving rare disease care in resource-diverse settings. Key Learnings from the Episode:HAE is significantly underdiagnosed in Mexico, with only 14–21% of estimated pediatric cases identified. Lack of awareness among general physicians is a major barrier — even though lab tests (C4, C1 inhibitor) are available in urban centers. Specialized testing is often limited to private or large public hospitals, delaying diagnosis for rural and underserved patients. Pharmaceutical industry partnerships help provide diagnostic support and access to genetic testing. Available treatments include: C1 inhibitor (plasma-derived) for on-demand and prophylaxis Icatibant for acute attacks Limited access to newer therapies, especially for long-term prophylaxis Mexico’s fragmented healthcare system affects treatment availability — with different access across social security, military, private, and public services. Off-label treatment is required for pediatric HAE patients with normal C1 inhibitor and confirmed mutations. Childhood obesity complicates dosing, as adult doses are sometimes needed in children with higher body weight. Patient advocacy organizations are playing a growing role in awareness and support. Registries and awareness campaigns are underway to improve diagnosis and physician education. Dr. Contreras and colleagues aim to establish the first ACARE center in Mexico, boosting access and research. Early diagnosis and collaborative care are essential to improving patient outcomes and quality of life. Chapters 00:00 Introduction to HAE and Guest Background 03:17 Current Situation of HAE in Mexico 05:35 Challenges in Diagnosis and Treatment 08:02 Available Treatments for HAE 09:47 Access and Prescription Challenges 12:28 Patient Advocacy and Future Improvements 14:10 Final Thoughts and Collaboration Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠

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• Cholinergic Urticaria & Angioedema: What You Need to Know

  In this episode, Thomas welcomes Dr. Sabine Altrichter, urticaria expert and physician at Kepler University Hospital in Linz, Austria, to discuss a fascinating and underrecognized condition: cholinergic urticaria — especially in patients who also experience angioedema.They discuss:🔹 What makes cholinergic urticaria different from other urticaria types? 🔹 Why do some patients develop angioedema in addition to wheals?🔹 How can we distinguish between cholinergic urticaria and exercise-induced anaphylaxis?🔹 What are current and emerging treatment options? Dr. Altrichter shares insights from clinical research and experience, including findings that show nearly half of cholinergic urticaria patients may develop angioedema.She explains the two main subtypes — allergy-related and sweat gland-related — and what this means for diagnosis and treatment. The discussion also covers new treatment options like anti-IgE therapies, mast cell-depleting agents, and drugs in the clinical pipeline like remibrutinib. Join us for a practical and engaging conversation on how to better diagnose and manage this unique condition.Key Learnings from the Episode:Cholinergic urticaria is triggered by body heating (e.g., exercise, sauna, passive warmth), leading to small, itchy wheals. Nearly 50% of patients also experience angioedema, often around the eyes or lips, indicating more severe disease.Patients with angioedema tend to have longer-lasting and more intense symptoms than those without. Two subtypes are emerging: one IgE/allergy-related and another with sweat gland dysfunction. Angioedema in cholinergic urticaria is not typically life-threatening, but may be accompanied by mild systemic symptoms. Provocation testing (e.g., exercise or stair running) helps confirm diagnosis. Antihistamines are first-line, but often insufficient in patients with angioedema. Omalizumab (anti-IgE) is effective in about two-thirds of patients. Mast cell-depleting therapies and remibrutinib are promising treatments in development. Differentiating from exercise-induced anaphylaxis is key: the latter causes more unpredictable and systemic reactions.Ongoing trials may reshape how we treat both mild and severe forms of the disease. Chapters   00:00 Introduction to Chronic Inducible Urticaria 03:03 Understanding Cholinergic Urticaria 04:57 Angioedema and Its Connection to Cholinergic Urticaria 07:23 Subtypes of Cholinergic Urticaria 08:17 Mechanisms Behind Cholinergic Urticaria 09:56 Diagnosis of Cholinergic Urticaria 11:17 Treatment Options for Cholinergic Urticaria 13:10 Differentiating from Exercise-Induced Anaphylaxis 14:34 Future Treatments and Research 16:41 Mast Cell Depletion and Its Implications Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠

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