The Itch: Allergies, Asthma, Eczema & Immunology

#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/

#69 - How are Mast Cell Diseases Treated?

Where do you begin with mast cell disease treatment when there is such variation among patients? 

Dr. Milner is back with us to discuss the difficulties in treating mast cell activation syndrome and mastocytosis. We will discuss the different approaches to treating mast cell disease and the medications used for mastocytosis treatment. Since no single treatment plan works for everyone, we will explore multiple strategies that can be helpful in managing this condition.

A note: when you hear MCAS mentioned, it stands for Mast Cell Activation Syndrome.

What we cover in our episode about treating mast cell diseases:

• What are the steps taken to treat mast cell diseases?

• Histamine blockers: antihistamines for mast cell disease and H2 blockers

• Mast cell stabilizers: Cromolyn and Ketotifen

• Xolair 

• Other medications that have been used but not recommended: aspirin, steroids, Singulair

• Epinephrine and anaphylaxis

• Tyrosine kinase inhibitors (TKI) for Mastocytosis: Avapritinib, Midostaurin

• Safety concerns and side effects of Tyrosine kinase inhibitors

•  Multidisciplinary approach to managing mast cell disease

About our guest - Dr. Josh Milner

Joshua Milner, MD, is a renowned leader in discovering and understanding genetic diseases leading to allergic symptoms, including Hereditary Alpha Tryptasemia Syndrome, PLAID, PGM3 deficiency, ERBIN mutation, and others. With a background in biology from MIT and an MD with distinction in immunology from Albert Einstein College of Medicine, Dr. Milner has extensive experience in pediatrics and allergy and immunology, serving as chief of the Laboratory of Allergic Diseases at NIAID.

His vision is to leverage genetic variation to improve diagnosis and care for patients with allergic diseases through comprehensive genetic sequencing and functional studies, aiming for personalized medicine and interdisciplinary collaboration in pediatric allergy, immunology, and rheumatology.

More about Dr. Milner: 

• https://www.pediatrics.columbia.edu/profile/joshua-milner-md

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/

• FDA Approves AYVAKIT® (avapritinib) as the First and Only Treatment for Indolent Systemic Mastocytosis: https://ir.blueprintmedicines.com/news-releases/news-release-details/fda-approves-ayvakitr-avapritinib-first-and-only-treatment

#68 - Why you need to clean your eyelash extensions & lid margins

Our episode on eyelash allergies was so interesting we had to bring you more from our favorite eye Doc, Dr. Luk. We delve into the fascinating world of eyelash health and hygiene, from the importance of cleanliness to the latest trends like eyelash serums and magnetic extensions. We discuss the importance of hygiene, eyelash serums, and magnetic eyelash extensions.

What we cover in this episode on how to clean eyelash extensions:

• Eyegiene: why you need to clean your eyelashes

• How to clean your eyelid margin

• How often should you clean your eyelid margins

• How to know if it is eczema or blepharitis

• What to consider when using lash serums

• Are magnetic eyelash extensions a better alternative to traditional eyelash extensions?

#67 - How to Diagnose Mast Cell Disease

Put on your detective hat because we will be diving into how to diagnose mast cell disease!

Dr. G and Kortney are joined by Dr. Josh Milner, one of the top experts in the field of mast cell disease, as they dive into the complexities of diagnosing mast cell disorders, focusing on cases of unexplained anaphylaxis and using this as our guide to understanding all of the tests that doctors do to figure out what is happening with your mast cells. 

From histories to blood and urine tests to Darier's sign, bone marrow biopsies and more, we dig into the many tests needed for the detective work diagnosing mast cell disease. We learn that a nuanced approach is required to diagnose mast cell disorders and the importance of thorough evaluation to differentiate between potential causes.

This podcast was made in partnership with Allergy & Asthma Network. We thank Blueprint Medicines for sponsoring this podcast.

What we cover in our episode about diagnosing mast cell disease:

• Unexplained anaphylaxis could be linked to mast cell disorders.

• Diagnostic tools:

  • Blood tryptase test (fast but time-sensitive)

  • Urine metabolite tests (easier, longer window)

  • Skin rash assessment (urticaria pigmentosa)

  • Bone marrow biopsy (serious cases)

• Symptoms: Sudden episodes, chronic issues like fatigue, depression.

About our guest - Dr. Josh Milner

Joshua Milner, MD, is a renowned leader in discovering and understanding genetic diseases leading to allergic symptoms, including Hereditary Alpha Tryptasemia Syndrome, PLAID, PGM3 deficiency, ERBIN mutation, and others. With a background in biology from MIT and an MD with distinction in immunology from Albert Einstein College of Medicine, Dr. Milner has extensive experience in pediatrics and allergy and immunology, serving as chief of the Laboratory of Allergic Diseases at NIAID.

His vision is to leverage genetic variation to improve diagnosis and care for patients with allergic diseases through comprehensive genetic sequencing and functional studies, aiming for personalized medicine and interdisciplinary collaboration in pediatric allergy, immunology, and rheumatology.

More about Dr. Milner: 

• https://www.pediatrics.columbia.edu/profile/joshua-milner-md

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/

#66 - Interview with Dr. Gailen D. Marshall, Jr.

Have you ever wondered why your doctor puts their membership in their bios? Why is it relevant to a patient that your allergist is a member of the ACAAI?

This podcast is made possible through Allergy & Asthma Network’s partnership with the American College of Allergy, Asthma and Immunology.

Dr. G and Kortney had the special privilege of interviewing Dr. Gailen Marshall, the president of the American College of Allergy, Asthma, and Immunology (ACAAI). He explains what the ACAAI, also known as the College, does and why this matters to patients. We learn about the resources provided by the College, which offer patients invaluable support in managing their allergies. From accessing specialized care through the "Find an Allergist" tool to engaging with the ACAAI's educational materials and advocacy opportunities, patients are empowered to take control of their treatment journey.

We also dive into Dr. Gailen Marshall's work in psychoneuroimmunology, which sheds light on how both external and internal environments impact allergic reactions. We touch upon Dr. Marshall's Presidential Initiative, CAAPER, which bridges the gap between community and academic allergists, driving innovation in patient treatment. As allergy research continues to advance, Dr. Marshall's leadership underscores the importance of interdisciplinary collaboration and patient-centred care in navigating the complexities of allergic diseases.

What we cover in the episode

• Dr. Marshall’s field of study: Psychoneuroimmunology
• What does the American College of Allergy Asthma and Immunology (ACAAI) do?
• How is the ACAAI relevant to patients?
• How can a patient take advantage of the resources the ACAAI has?
• How can patients be involved with the ACAAI?
• Why should you see an allergist?
• Dr. Marshall’s Presidential Initiative - Community and Academic Allergist Partnership in Education and Research (CAAPER)

About our guest, Dr. Marshall

Gailen D. Marshall, Jr. MD, PhD, FACP, is the president of the American College of Allergy, Asthma and Immunology and holds distinguished roles as Chair of Allergy and Immunology, Professor of Medicine and Pediatrics, Vice Chair for Research, Director of the Division of Clinical Immunology and Allergy, and Chief of the Laboratory of Behavioral Immunology Research at the University of Mississippi Medical Center in Jackson. 

With a background in both Immunology and Medicine from the University of Texas Medical Branch in Galveston and extensive training at institutions like the University of Iowa and the University of Tennessee at Memphis, Dr. Marshall is renowned for his expertise in integrative approaches to managing inflammatory diseases. His research delves into the impact of psychological stress and environmental factors on immune responses, aiming to identify biomarkers for stress susceptibility.

With over 200 publications and active engagement as a speaker in regional, national, and international forums, Dr. Marshall also served as Editor-in-chief of the Annals of Allergy, Asthma and Immunology, showcasing his leadership in the field. Additionally, he plays a vital role in professional societies like the Southern Society for Clinical Investigation, where he serves as Secretary-Treasurer and contributes to various committees, highlighting his commitment to advancing clinical research and education.

 

#65 - The Symptoms and Triggers of Mast Cell Disease

Have you ever considered whether your nasal congestion, IBS, brain fog, and hives are related? 

This podcast was made in partnership with Allergy & Asthma Network. We thank Blueprint Medicines for sponsoring this podcast.

Dr. Anne Maitland joins us as we delve into the complex world of mast cell disease. From the confusing range of symptoms to the unpredictable nature of each person's experience, we unravel the mysteries that make mast cell disorders so uniquely difficult to tackle.

Dr. Maitland is an expert in allergy and immunology and sheds light on the diverse manifestations of mast cell dysfunction, from headaches and nasal congestion to gastrointestinal issues and skin reactions like hives.Dr. Maitland emphasizes the importance of recognizing mast cell dysfunction's impact across different organs for accurate diagnosis and management.

What we cover in our episode about mast cell disease:

• Symptoms of mast cell disease

• How to connect the dots of mast cell disease symptoms

• What is a sign that your symptoms are related to mast cells

• The job of mast cells and their scientific history

• Is an anaphylactic reaction a mast cell disease?

• What triggers mast cell disease? 

• Mast cell targetted medications and how this can hide your symptoms

About our guest - Dr. Maitland

Dr. Maitland is a highly respected physician and a Fellow of the American College of Allergy, Asthma, and Immunology. She was named New York Times' Super Doctors in 2011 and one of America's Top 21 Women's Doctors by Lifescript.com in 2009. Dr. Maitland is actively involved in creating awareness of immune-mediated disorders and researches to enhance treatments for allergies, asthma, and recurrent infections. She specializes in allergic skin disorders, allergic rhinitis, drug allergies, food allergies/sensitivities, asthma, and recurrent infections. 

Dr. Maitland holds an MD and PhD from the University of Pennsylvania and completed her residency in Internal Medicine at Brigham and Women's Hospital in Boston. She also pursued a Fellowship in Allergy and Immunology at Brigham and Women's Hospital and Mount Sinai Hospital in New York.

More about Dr. Maitland: 

• https://www.metrodora.co/anne-maitland

• https://www.drannemaitland.net/dr-anne-maitland

More resources about mast cell disease:

• Mast Cell Disease page: 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/

#64 - Eyelash Extension Allergy

Are you allergic to your eyelash extensions?

Eyelash extensions have become increasingly popular in recent years, offering a way to achieve fuller, longer lashes without the hassle of applying mascara every day. However, some potential risks are associated with eyelash extensions, including allergic reactions.

Dr. Janice Luk joins Dr. G and Kortney to discuss eyelash extensions and what happens when things go wrong. We dive into eyelash extension allergies and contact dermatitis, what the reactions look like, how to treat the reactions best and why you need to take care of your biofilm.

No one wants to play with their vision or have an allergic reaction around the eye; this episode will help you better understand what could happen and how to prepare your lash extensions properly.

What we cover on eyelash extension allergies:

• What are eyelash extensions?

• How eyelash extensions differ from what you can do at home

• What does the allergic reaction to eyelash extensions look like?

• Contact dermatitis versus an IgE-mediated allergic reaction

• What glues are being used, and what would cause the reaction?

• Symptoms and treatment for a lash extension allergy

• Why you don't want to use over-the-counter medication for your eyes

• The importance of keeping a clean biofilm

• Eyegiene

• Traction alopecia caused by lash extensions

• When should you seek medical attention for eyelash extension reactions

• What is the difference between an ophthalmologist and an optometrist