The Itch: Allergies, Asthma, Eczema & Immunology

#79 - Living with Chronic Spontaneous Urticaria

Imagine being so itchy that you’d consider cutting off your skin just for relief. That’s what it can be like living with chronic spontaneous urticaria.

We sit down with Heather, a patient living with chronic spontaneous urticaria, as she candidly shares her experiences from the initial diagnosis to navigating the complex landscape of treatments and mental health support. Her story sheds light on the day-to-day struggles and triumphs of managing CSU, offering hope and practical advice for those in similar situations.

Dr. G unpacks Heather's diagnosis and treatment journey, including antihistamines and Omalizumab. Dr. G also highlights the importance of managing mental health. Kortney shares her experience of itch and, with Heather, discusses the impact of chronic itching on quality of life and how to explain this to friends and family.

What we cover in our episode about living with chronic spontaneous urticaria

• Heather's Journey with CSU: Heather shares her initial diagnosis and the rollercoaster of emotions and challenges that followed.
• Anaphylaxis vs. CSU: Understanding the critical differences between these two conditions.
• Finding the Right Treatment Plan: The journey to discovering effective medications like antihistamines and the injectable - Omalizumab (Xolair).
• Mental Health Support: The importance of therapy and online resources in managing life with CSU.
• Management strategies: Heather shares what works for her in managing exacerbating situations. 
• Advice for New Patients: Heather offers valuable advice for those beginning their CSU journey.

More resources about chronic spontaneous urticaria: 

• Chronic Urticaria Management, Resources & Glossary of Terms: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/management-and-resources/
• What is Chronic Urticaria: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/ 
• More information about Omalizumab (Xolair): https://www.xolair.com/chronic-spontaneous-urticaria.html
• Episode Heather talks about where she learned to call her condition Lynda: https://www.itchpodcast.com/episodes/71-living-with-mastocytosis 

Disclaimer: This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.

#78 - Chronic Spontaneous Urticaria Treatments

Yes, there are more options than antihistamines to treat chronic spontaneous urticaria. We dive into them! 

Dr. Sheila Gogate joins us to discuss the chronic spontaneous urticaria (CSU) treatments currently available for patients. Dr. Shaila Gogate outlines the treatment journey for CSU with an emphasis on shared decision-making.  

This episode emphasizes the importance of following treatment guidelines and adjusting medications as needed. We discuss the available treatments for urticaria, including antihistamines, omalizumab (Xolair for hives), and Cyclosporine. The episode also explores the journey of managing CSU symptoms through both medical and non-medical approaches.

What we cover in our episode about chronic spontaneous urticaria treatments

• Treatment Path and Guidelines: Overview of doctors' steps to treat CSU. The importance of shared decision-making in the treatment plan. 
• Antihistamines: Role of oral antihistamines and H2 blockers in managing hives, dosing options, side effects, when to change medications, and how to choose the right antihistamine.
• Advanced Treatments: If antihistamines fail, the following steps include omalizumab (Xolair) injections or Cyclosporine. An overview of both dosing options and side effects.
• Emerging Therapies: Treatments like Remibrutinib and Dupilumab.
• Quality of Life and Non-Medical Management: The Urticaria Activity Score (UAS7). Mental health screening for CSU patients and strategies like stress reduction and if special diets are effective.

About our guest, Dr. Shaila Gogate

Dr. Shaila Gogate, board-certified by the American Board of Allergy & Immunology, has been with Colorado Allergy & Asthma Centers since 2014. She completed her medical education at Chicago Medical School, her residency at Washington University, and her fellowship at National Jewish Health in Denver. Dr. Gogate has served as an Assistant Professor at the University of Colorado, has extensive clinical research experience, and emphasizes strong patient-provider communication to develop effective treatment plans.

More resources about chronic spontaneous urticaria: 

• Chronic Urticaria Management, Resources & Glossary of Terms: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/management-and-resources/
• What is Chronic Urticaria: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/ 
• How Mast Cells Work Video_ mast cell video - explanation of mast cell (07:20): https://youtu.be/OF7tBIvMK_0?si=osJaIpTrivUP1Owr
• Urticaria Activity Score (uas7): https://www.mdcalc.com/calc/10226/urticaria-activity-score-uas

More information about XOlair: https://www.xolair.com/chronic-spontaneous-urticaria.html

#77 - Food Allergy and Its Impact on the Black Community

How is the black community impacted by food allergies?

Dr. Carla Davis joins Dr. G and Kortney to discuss the impact of social determinants of health on food allergy outcomes within the Black community. Dr. Davis highlights historical factors like redlining and insurance disparities that exacerbate health disparities, resulting in higher prevalence rates of food allergies and multiple allergies among Black patients. These disparities often lead to increased emergency room visits and barriers to accessing allergen-free foods, compounded by socioeconomic challenges and food insecurity.

Dr. Davis also underscores how cultural differences significantly influence the management of food allergies within families, particularly during gatherings, and emphasizes the crucial role of media representation in raising awareness and promoting acceptance.

We discuss the critical need for increased Black representation in research trials, recognizing the challenges posed by longstanding mistrust in the medical community among Black patients.

Key Points Covered in This Episode:

• Health Disparities: Social factors significantly impact food allergy outcomes in the Black community.
• Limited Healthcare Access: Redlining and insurance disparities restrict healthcare access, worsening health outcomes.
• Food Insecurity: Challenges in accessing allergen-free foods are heightened by food insecurities and food deserts.
• Cultural Factors in Food Allergy Management: Cultural influences play a crucial role in managing food allergies within families.
• Resources for Food Allergies: Essential support from food banks and allergy organizations for managing allergies and food insecurity.
• Communication Tips for Patients: Practical advice for effective communication and advocacy with healthcare providers.
• Historical Mistrust of the Medical Community: Historical discrimination contributes to mistrust in healthcare, affecting access and outcomes.

Helpful Resources

• Health Disparities in Allergy, Asthma and Immunologic Diseases (New Webinar July 16, 2024): https://allergyasthmanetwork.org/webinars-updates/health-disparities-diseases/
• Black People Like Me Virtual Conference Series 2024: https://allergyasthmanetwork.org/trusted-messengers-project/black-people-like-me-2024/
• Food Allergy Resources: https://allergyasthmanetwork.org/allergies/ 
• School Plans for Students with Food Allergies: https://allergyasthmanetwork.org/news/school-plans-students-food-allergies/

Food Equality Initiative - Food Allergy Friendly Food Bank Resource: https://www.foodequalityinitiative.org/

#76: Diagnosing Chronic Spontaneous Urticaria

How do you know if your hives are chronic spontaneous urticaria? 

Join Kortney and Dr. Payel Gupta in the second episode of this chronic spontaneous urticaria (CSU) series as they delve into the diagnostic journey of CSU. 

Have you wondered if the path to a chronic spontaneous urticaria diagnosis is long? CSU can feel like a very complex disease to diagnose due to the lack of identifiable triggers, but this episode breaks down the steps healthcare professionals take to diagnose CSU. 

Dr. G clarifies how allergists' and dermatologists' roles differ in diagnosing CSU. The episode emphasizes the importance of a detailed medical history and the tests involved in ruling out other conditions. It also describes the journey of determining CSU from other skin and allergic reactions through meticulous evaluation and specific testing methods.

What we cover in our episode about diagnosing Chronic Spontaneous Urticaria:

• Introduction to CSU Diagnosis: CSU has no identifiable triggers, making diagnosis a process of elimination.
• Role of Specialists: Patients often start their diagnosis journey at urgent care, after which they consult allergists and dermatologists depending on the severity and symptoms of hives.
• Detailed Medical History: Essential questions cover medications, infections, travel history, and other health changes to rule out underlying causes.
• Physical Examination: Doctors check if hives are “blanchable” to differentiate from other conditions like vasculitis.
• Ruling out other Conditions: This involves evaluating other conditions in which hives are a symptom, such as mast cell disease or various autoimmune diseases. 
• Necessary Tests: Doctor’s apprehension about doing a food allergy test unless necessary. Other tests include looking at blood count (CBC with differential) and inflammation (ESR or CRP). 

More resources about chronic spontaneous urticaria: 

• Chronic Urticaria Management, Resources & Glossary of Terms: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/management-and-resources/
• What is Chronic Urticaria: https://allergyasthmanetwork.org/health-a-z/chronic-urticari

This episode is produced in partnership with Allergy & Asthma Network. We want to thank Novartis for sponsoring this episode.

Disclaimer: This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.

#75 - Understanding Chronic Spontaneous Urticaria: Hives Demystified

Do you get hives and have no clue why? Then this episode is for you!

Join Kortney and Dr. Gupta as they unpack chronic spontaneous urticaria (CSU) in a six-part series. You may also have heard of this condition called chronic idiopathic urticaria or spontaneous urticaria.

In this first episode, Kortney and Dr. Gupta dive into the nitty gritty of chronic spontaneous urticaria. They define the medical term "urticaria," commonly known as hives, and discuss how CSU differs from other forms of urticaria. They dive into the symptoms, including the itchy and transient nature of hives, and emphasize that CSU can vary in appearance depending on skin tone. 

What may seem complicated in chronic spontaneous urticaria is that there are no triggers. Instead, Dr. G walks us through the factors that may be culprits to CSU flares, such as stress and certain medications, and she highlights the impact of autoimmune conditions on CSU prevalence.

What we cover in our episode about chronic spontaneous urticaria:

• Definition and symptoms of urticaria (hives)
• Differences between chronic spontaneous urticaria (CSU) and chronic inducible urticaria (CINDU)
• The definition of chronic spontaneous urticaria and its symptoms
• The role of histamine in hives
• The mechanisms of itch and why scratching feels so good
• Factors that can exacerbate chronic spontaneous urticaria
• Populations most affected by chronic spontaneous urticaria
• The average duration of CSU symptoms
• Is chronic spontaneous urticaria curable

More resources about chronic spontaneous urticaria:

• Chronic Urticaria Management, Resources & Glossary of Terms: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/management-and-resources/
• What is Chronic Urticaria: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/
• Episode 39: urticaria what causes hives? https://www.itchpodcast.com/episodes/39-urticaria

This episode is produced in partnership with The Allergy & Asthma Network. We thank Novartis for sponsoring this episode and the series. 

Disclaimer: This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.

#74 - Environmental Impact of Climate Change for People with Asthma and Allergies

As temperatures rise and weather patterns become more unpredictable, the effects of climate change on respiratory health become even more noticeable.

Dr. Stephanie Lovinsky-Desir, an expert in respiratory health, joins Dr. G and Kortney to discuss how climate change exacerbates respiratory conditions like asthma, particularly affecting vulnerable populations. 

The episode explores why we should consider the connection between climate change and asthma. Understanding the mechanisms behind it is crucial. Dr. Lovinsky-Desir explains how increased temperatures lead to higher levels of air pollution and create “heat islands" in urban areas. Heat islands are urban areas that are significantly warmer than their surrounding rural areas due to human activities. These islands intensify health risks by trapping heat and pollutants, worsening air quality and increasing respiratory distress.

Dr. Lovinsky-Desir and Dr. G share practical measures that are easy to implement and can significantly help us navigate poor air quality. These include wearing masks during high pollution and monitoring air quality through initiatives like the State of the Air Report or your weather app. She also highlights the role of organizations like the American Lung Association in providing resources and support for improving indoor air quality.

We hope this episode helps you better understand climate change's impact on air quality, the overall environment, and lung health. Hopefully, you can take meaningful steps towards a healthier future for all. If you are in doubt about the impacts of climate change, this episode is for you!

What we cover in our about climate change, air pollution and lung health

• The relationship between air pollution, air quality and climate change
• The impact of climate change on season allergies
• The effect of air quality on lung health
• The populations most impacted by poor air quality
• Poor housing and its effects on lung health
• Programs and resources help make housing healthier 
• What you can do to keep your lungs safe
• How to explain to someone why they need to care about climate change and asthma

Helpful links

• More about our sponsor, Chiesi: https://www.chiesiusa.com/
• Pollen Report from Allergy Asthma Network: https://allergyasthmanetwork.org/weather/ 
• State of the Air Report from The Lung Association: https://www.lung.org/research/sota
• Tips to Manage Asthma and Allergies Caused by Climate Change: https://allergyasthmanetwork.org/news/climate-change-what-you-can/
• Lifestyle Changes to Manage Asthma: https://allergyasthmanetwork.org/what-is-asthma/lifestyle-changes-to-manage-asthma/

#73: What to Know About Advanced Systemic Mastocytosis

Have you ever searched for information on mast cell disease only to be overwhelmed by alarming topics like cancer and stem cell transplants? Then this episode is for you!

Our guest, Dr. Marina Kremyanskaya, joins hosts Dr. G and Kortney to provide insight into the progression of systemic mastocytosis and the available treatment options to improve quality of life and extend lifespan.

Dr. Kremyanskaya distinguishes between indolent and aggressive systemic mastocytosis, shedding light on warning signs indicating disease progression. She offers a detailed exploration of treatment approaches for aggressive mastocytosis, highlighting the evolving treatment plan and differing prognosis from indolent cases. Additionally, Dr. Kremyanskayaa delves into the concept of myeloid malignancy, providing insight into the more challenging aspects of advanced systemic mastocytosis progression.

We also dive into stem cell transplants as a potential cure for advanced systemic mastocytosis. Dr.  Kremyanskaya explains why this option is not immediately pursued due to the complexity of the procedure and the risk of graft-versus-host disease (GvHD), a potential complication associated with stem cell transplants.

What we cover in this episode about advanced systemic mastocytosis:

• Understanding indolent systemic mastocytosis
• Signs indicating progression to advanced mastocytosis.
• Treatment strategies for aggressive mastocytosis and associated prognosis.
• Explanation of advanced systemic mastocytosis with or without hematologic malignancy.
• Definition of myeloid malignancy.
• Understanding the impact of advanced systemic mastocytosis on organs.
• The effectiveness of early treatment in slowing down the progression.
• The role of stem cell transplant in treating mastocytosis.
• Stem cell transplant and associated risks
  • Role of chemotherapy in stem cell transplant.
  • Overview of graft-versus-host disease.
  • Addressing whether stem cell transplant serves as a cure for mast cell disease.

Resources about mast cell disease:

• Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/
• What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/
• What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/
• The Mast Cell Disease Society: https://tmsforacure.org/

#72 - Mast Cell Disease, the Hematologist & New Treatments on the Horizon

Why talk to a hematologist about mast cell disease and systemic mastocytosis treatment?

Dr. Douglas Tremblay, a leading hematologist, joins Dr. G and Kortney to discuss the role of a hematologist-oncologist in diagnosing and treating mastocytosis. We discuss bone marrow's vital role in diagnosing and treating systemic mastocytosis. 

Dr. Tremblay discusses the latest KIT inhibitors, a promising group of medications, and explains the difference between indolent and advanced systemic mastocytosis. He clarifies how KIT inhibitors work and emphasizes the importance of managing side effects. Finally, Dr. Tremblay provides insights into the future of KIT inhibitor approval and explores the possibility of participating in a clinical trial for Bezulastinib. 

What we cover in this episode about treating systemic mastocytosis:

• What is a hematologist looking at with mast cell disease patients?
• Mast cell diseases and the role of bone marrow
  • Bone marrow biopsy for systemic mastocytosis 
  • What is a bone marrow biopsy?
  • Information bone marrow biopsy provides for diagnosis
• KIT mutation 
• KIT mutation testing in bone marrow and blood (digital droplet PCR)
• Indolent Mastocytosis versus Advanced Mastocytosis
• Current research for treating mast cell disease
• How KIT inhibitors work
• Do KIT inhibitors weaken the immune system?
• KIT Inhibitors discussed in this episode:
  • Avapritinib
  • Bezulastinib
  • Elenestinib
• Are KIT inhibitors a cure for mast cell disease?
• Determining the tolerance for side effects of medications when researching and adding new medicines for diseases 
• The meaning of ‘NIB’ in the medication names
• The timeline for the new KIT inhibitors approval
• The type of patient that can participate in the clinical trials for Bezulastinib

Resources about mast cell disease:

• Dr. Tremblay: https://profiles.mountsinai.org/douglas-a-tremblay

  • Dr. Tremblay’s email: douglas.tremblay@mssm.edu 

• Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/

• What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/

• What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/

• The Mast Cell Disease Society: https://tmsforacure.org/

• Current studies enrolling patients: https://tmsforacure.org/clinical-trials/

#71 - Living with systemic mastocytosis

What is it like when an unpredictable disease like systemic mastocytosis forces you to change the trajectory of your life?

As we continue to unpack mast cell disease, Dr. G and Kortney wanted to get the patient's perspective on living with such a complex disease. Tammie joins the podcast to discuss her journey battling mastocytosis, a rare condition affecting mast cells in the body.

If you ever feel alone on your chronic health journey, know you aren’t! Tammie's resilience and wisdom serve as a beacon of hope. We hope this inspires you to approach your health journey with determination and a sense of community.

 

What we cover in this episode:

• Tammie’s mastocytosis journey

• The challenges of not getting a proper diagnosis

• The pros and cons of being able to google medical conditions

• What do to when a doctor does not want to take you on as a patient 

• How Tammie separates the disease from her life 

• How do you navigate work with a chronic disease?

• Working with a mental health team

• How do you ask your family/friends for help

• Patient's relationship with their healthcare team

• Pros and cons of an online community for chronic disease and the importance of a real-life community

 

Connect with Tammie online:

• TikTok https://www.tiktok.com/@rachelllargentphillips
• Instagram https://www.instagram.com/tammie_rachell/

 

Resources about mast cell disease:

• Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/

• What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/

• What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/

• The Mast Cell Disease Society: https://tmsforacure.org/

#70 - How do low histamine diets and stress impact mast cell disease?

Can a low-histamine diet help with mast cell disease? Why is stress a big trigger for mast cell disease?

Dr. Milner joins us again to discuss two hot topics in managing mast cell disease. We start by demystifying the low histamine diet and sharing when appropriate. The answer may be different from what you expect or want to hear. We also talk about stress, a topic we are learning impacts so many chronic diseases, especially those related to mast cells. Stress can worsen symptoms, and in this episode, both doctors emphasize the importance of stress management techniques.  

What we cover in this episode about low histamine diet and stress management

• Why go on a low histamine diet?
• What is histamine intolerance? 
• How well do low histamine diets work for mast cell disease?
• The impact of stress on mast cell disease
• Stresses impact on the gut
• Stress management is integral in mast cell disease treatment 

More resources about mast cell disease:

• Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/
• What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/
• What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/
• The Mast Cell Disease Society: https://tmsforacure.org/