#176: SM Perspectives - The Doctor's Experience of Treating Systemic Mastocytosis

We hear a lot about the struggles patients face on their systemic mastocytosis journey, the years of normal labs, the feeling of not being believed. But have you ever wondered what that feels like from the doctor's side? Kortney and Dr. Payel Gupta are joined by Dr. Alexander Kim, an allergist and immunologist who co-directs the Mast Cell Disorders Program at UC San Diego, for an honest look at what it's like to sit on the other side of the exam table and untangle a diagnosis of this complex condition. What we cover in this episode about treating systemic mastocytosis Why "your labs look fine" doesn't mean nothing's wrong. Dr. Kim explains why this journey can be challenging for doctors when labs are normal, but symptoms are severe.  Why systemic mastocytosis is still hard to diagnose, even with better tools. SM has a clearer testing path than mast cell activation syndrome (MCAS) does, but the overlap between the two still creates real diagnostic uncertainty in practice. What “dismissiveness” looks like from a doctor's side. From time constraints and busy schedules to the gap between meaning to listen and actually making a patient feel heard. Practical fixes for short appointments. Asking for a double appointment slot, bringing a written summary instead of hundreds of pages of records, and scheduling shorter, more frequent follow-ups instead of one long visit. What each side wants the other to understand. What it takes to build a trusting, lasting relationship with a healthcare provider when you're living with systemic mastocytosis. More resources about mast cell disease About the PIONEER Trial for Avapritinib Mast Cell Disease Toolkit What is Mastocytosis? What is Mast Cell Activation Syndrome (MCAS)? ************ Made in partnership with The Allergy & Asthma Network. Thanks to Blueprint Medicines for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

Mast cell disorders can feel confusing, especially with so much information floating around online and on social media. In this episode, we cut to the chase and tackle the most common mast cell disorder FAQs, straight from the community. Dr. Dareen Siri joins us to work through community questions on mast cell disorders one by one, from what a mast cell actually is to testing, treatment, diet, and long-term outlook. What we cover in this episode about mast cell disorders What is a mast cell. Dr. Siri breaks down what mast cells do in the body and why an overactive one causes symptoms. The different mast cell disorders. Allergies, autoimmune activation, and clonal disorders like indolent systemic mastocytosis each work differently. Which tests actually matter. Blood tests, the KIT D816V mutation test, and when a bone marrow biopsy comes into play. Plus, should you consider a urine test? Treatment and long-term outlook. What targeted treatment (avapritinib) looks like now, and whether a mast cell disorder shortens your lifespan. Diet, supplements, and bone health. Whether a low-histamine diet helps, what the evidence says about supplements, and why bone density matters long term. More resources about mast cell diseases All of our mast cell disease episodes About the PIONEER Trial for Avapritinib Mast Cell Disease Toolkit Mental Health and Mast Cell Disorders Symptoms, Diagnosis & Treatment Options for Mast Cell Disorders (Recording) ************ Made in partnership with The Allergy & Asthma Network. Thanks to Blueprint Medicines for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

How do you decide what is the right medication for you after antihistamines are not working to manage your chronic hives? Dr. David Lang, one of the authors of the new chronic urticaria guidelines (still in review), walks through every advanced treatment option the way he would if he had as much time as possible with a patient in his office. Along with Dr. Gupta, they cover the three treatments available when antihistamines are not enough, what each one asks of you week to week, and how to walk into your appointment ready to choose. Dr. Lang’s patient guide: Choosing an Advanced Treatment for Chronic Hives  What we cover in our episode about  chronic hives treatment What to think about when choosing a medication: benefit, harm, and burden. Dr. Lang explains why these are three different things, and why the one most patients are never asked about is what a treatment costs them in time, appointments, and schedule. The three advanced options side by side. Omalizumab (Xolair), dupilumab (Dupixent), and remibrutinib (Rhapsido) compared on how often you take them, how fast they work, and what the side effects really are. What the scary side effects actually mean. Dr. Lang walks through the anaphylaxis, cancer, and heart risks tied to omalizumab, and explains how likely each one really is. When blood tests for chronic hives come into the picture. Testing will not tell you why you have hives, but it may hint at which of the three treatments is more likely to work for you. Insurance may choose your starting point. All three treatments are approved for chronic hives, so if your plan covers one over another, that is a reasonable place to start, not a compromise. ************ Made in partnership with The Allergy & Asthma Network. Thanks to Genentech & Novartis for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.  

Starting a biologic can feel intimidating, especially if you are worried it means being on medication forever, or wondering if it will actually replace your inhaler or your next sinus surgery. After this episode, we hope your biggest biologics questions are answered. Kortney and Dr. Payel Gupta are joined by Dr. Giselle Mosnaim, an allergist and immunologist, to walk through the united airway, what uncontrolled disease really means, and the most common questions patients have before starting a biologic. What we cover in this episode about biologics for asthma, COPD, and nasal polyps The united airway. Why the nose and lungs share the same lining, and why the same biologics can treat conditions in both. What a biologic actually is. How it targets one specific part of the immune system instead of suppressing the whole thing like steroids. What uncontrolled disease means. Why taking your medication as prescribed does not always mean your asthma, COPD, or nasal polyps are under control. The goal of starting a biologic. What results to expect, how biologics work alongside your inhaler or nasal spray instead of replacing it, and how they can reduce the need for repeat sinus surgery. Common myths and fears. Answers to real patient worries about weight gain, needles, side effects, pregnancy, and being on a biologic long term. ________ Made in partnership with The Allergy & Asthma Network. Thanks to AstraZeneca for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.  

Needing oral steroids for your asthma is a signal, not just a setback. It could be a sign that your asthma is not actually under control, even if you feel like you're managing it day to day. Dr. Wes Sublett joins us to talk about why relying on steroid bursts is a warning sign, not a solution. Dr. Sublett breaks down what actually counts as an asthma exacerbation, the real risks of frequent oral steroid use, and the treatment options available so patients can avoid repeat trips to the ER. What we cover in this episode about oral steroids and asthma control Steroid bursts as a warning sign. Needing oral steroids for asthma is a signal your maintenance treatment may not be working. What actually counts as an exacerbation. Dr. Sublett explains the difference between a flare and a true asthma exacerbation, and why that distinction matters. The real risks of oral steroids. Repeated courses are linked to bone loss, diabetes, cataracts, and other long-term health risks. Why your specialist doesn't automatically know. ERs and urgent cares don't notify your asthma specialist when you're treated, so you have to share that history. Treatment options beyond steroid bursts. Triple therapy and biologics can reduce or eliminate the need for oral steroids for many patients. More resources Oral Corticosteroids (OCS) for Asthma, a deeper explainer from Allergy & Asthma Network What if I Can't Afford My Asthma Medication? ________ Made in partnership with The Allergy & Asthma Network. Thanks to AstraZeneca for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

For decades, the rescue inhaler was simple: feel tight, take a puff, breathe easier. But the newest asthma guidelines have changed what's actually recommended inside that inhaler, shifting away from plain albuterol toward a combination inhaler that treats symptoms and inflammation at the same time. Kortney and Dr. Payel Gupta are joined by Dr. Bill McCann, allergist and CEO of Allergy Partners, to break down why this combo inhaler approach is now preferred, what it actually contains, and why auto-refilling your old rescue inhaler might be working against you. What we cover in this episode about rescue inhalers Understanding asthma: the boiling pot analogy. Dr. McCann explains asthma inflammation using a pot of water on the stove, and why a bronchodilator alone never turns down the heat. Why a combo inhaler is now preferred. The newest guidelines recommend a single inhaler containing both a fast-acting bronchodilator and a low dose of anti-inflammatory steroid. AIR and MART, explained simply. Two ways doctors are using this combo inhaler: either as-needed only, or as a daily plus as-needed routine. The myth of "mild" asthma. Why intermittent or infrequent symptoms don't mean you're free from risk. The auto-refill trap. Why an automatic pharmacy refill on your old rescue inhaler can quietly hide worsening asthma control from your doctor. More resources GINA 2026 Strategy Report (official source) What is asthma? Listen to the BATURA Trial ________ Made in partnership with The Allergy & Asthma Network. Thanks to AstraZeneca for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

Most asthma peak week coverage focuses on kids heading back to school. But adults with asthma are just as much at risk, and often don't realize it until they're already in trouble.  Kortney and Dr. Payel Gupta are joined by allergist Dr. Ashwin Shankar to talk about why asthma peak week hits adults hard, how normalizing symptoms can quietly put you at risk, and what steps to take before the season catches up with you. What we cover in this episode about adult asthma peak week What asthma peak week is, and why fall hits so hard. The third week of September brings the highest asthma-related ER visits and hospitalizations of the year. Where fall triggers hide. Teachers and school staff face mold in buildings that sat closed all summer, outdoor workers get hit with ragweed and sudden cold mornings, and farm workers stir up mold and dust during harvest. Why even controlled asthma can slip during peak week. Trigger load stacks up fast this time of year, and a flare during peak week doesn't mean you're doing something wrong. The adult habit of normalizing symptoms. Skipping hikes, avoiding stairs, or accepting a lingering cough are signs asthma isn't controlled, not just signs of getting older. How to get ahead of peak week before it hits. Confirm your asthma action plan, track how often you're reaching for your rescue inhaler, and get your flu shot at least two weeks before September ramps up. Resources Do You Have an Asthma Action Plan? A Comprehensive Guide for Asthma Treatments & Medication 10 Ways to Stay Healthy During the September Asthma Peak Week Lifestyle Changes to Manage Asthma ________ Made in partnership with The Allergy & Asthma Network. Thanks to AstraZeneca and Amgen for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

Every September, doctors see a jump in asthma attacks and ER visits. It's called Asthma Peak Week, and it usually hits the third week of September, right when families are settling into their school routines.  Kortney and Dr. Payel Gupta are joined again by Liz Elliott, a nurse administrator in school health services for Montgomery County, Maryland, and a returning guest from our food allergy episode. This time, Liz answers the questions parents ask most about asthma at school, from what actually happens during a flare to whether their child's inhaler needs to be with them or in the health room. What we cover in this episode about Asthma Peak Week from the school nurse perspective Can my child self-carry their inhaler? The rules on self-carry, and why kindergartners and teenagers are handled differently. Does the school have stock rescue inhalers (albuterol)? What stock albuterol is, and what happens if your child's own inhaler isn't there yet. What happens if my child has a flare at school? Learn the protocol that is in place if your child experiences an asthma attack, and what happens for kids who experience their first asthma flare. Signs of asthma parents might miss that their child's asthma is not under control. Nighttime awakenings and an "asthma cough" can all be early warning signs. Closing the gap between home and school. Why the plan your provider signs has to match what's sent to school, and what to bring on day one. More resources Allergy & Asthma Network: How to Avoid the September Asthma Peak Allergy & Asthma Network: Asthma Action Plan Allergy & Asthma Network: Managing Asthma at School Allergy & Asthma Network: School Resources Listen: Ep. 135: Food Allergies in School, A School Nurse's Perspective CDC Asthma School Resources NASN Asthma CPG and Toolkit __________ Made in partnership with The Allergy & Asthma Network. Thanks to AstraZeneca and Amgen for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.

Wildfire smoke used to feel like someone else's problem. Now it can show up on air quality alerts hundreds of miles from any actual fire, and for anyone with asthma, that hazy sky can mean real trouble breathing. In this episode, Kortney and Dr. Gupta are joined by Dr. Neelu Tummala, an ENT physician and climate health expert, to talk about why wildfires are getting more frequent and intense, what is actually in wildfire smoke, and the everyday steps that can protect your lungs, your family, and even your pets. What we cover in this episode about wildfire smoke and asthma Why wildfires are intensifying. Warmer, drier conditions have extended the wildfire season by about a month compared with 35 years ago. What's actually in the smoke. PM2.5 particles make up most of wildfire smoke's mass and are small enough to slip past your body's natural filters. How it affects your body. Smoke can irritate the nose, throat, and ears before it ever reaches your lungs, and it can also affect heart and brain health. Who's most at risk. Babies, kids, older adults, pregnant women, and anyone with asthma, COPD, or heart disease need extra caution. How to protect yourself. Check the AQI, wear a well-fitted N95, run air purifiers, and keep pets indoors during smoky days. More resources How Wildfire Smoke Can Worsen Your Asthma How Climate Change Impacts Allergies and Asthma Find out about your local air quality: Asthma and Allergy Forecast American Lung Association: State of the Air report, PDF version Wildfires and asthma from the American Lung Association NYC Resources: Cooling options and Cooling centers This podcast is made in partnership with Allergy & Asthma Network

Chronic rhinosinusitis without nasal polyps (CRSsNP) is the type that makes up most chronic sinusitis cases. It's often mistaken for allergies, a lingering cold, or migraines, which can delay a proper diagnosis for years. Dr. Gupta and Kortney sit down with Dr. Anju Peters, an allergist at Northwestern University's Feinberg School of Medicine, to unpack how this condition is actually diagnosed, why it can take patients years to get an answer, and which treatments have real evidence behind them. What we cover in this episode about chronic sinusitis without nasal polyps Two types of chronic sinusitis. About 75% of chronic sinusitis patients do not have nasal polyps, and about 20 to 25% do, and the treatment path differs depending on which type you have. Getting the right diagnosis. Doctors confirm chronic sinusitis without nasal polyps by combining at least 12 weeks of symptoms with objective proof of inflammation. Ruling out look-alikes. Allergies, colds, and migraines can all cause similar congestion and pressure, so doctors pay close attention to how long symptoms last and whether inflammation is actually confirmed. Building a treatment toolkit. Nasal steroid sprays are the backbone of treatment. When to consider surgery. When sinus surgery becomes the next step in sinus care. Resources: Ep. 133 What Is Chronic Rhinosinusitis with Nasal Polyps (CRSwNP)? Ep. 149 What is Chronic Rhinosinusitis without Nasal Polyps Allergy & Asthma Network: chronic rhinosinusitis overview How is chronic rhinosinusitis diagnosed Treatment and management of chronic rhinosinusitis What is chronic rhinosinusitis with nasal polyps How to use the FDA-approved nasal spray *********** Made in partnership with The Allergy & Asthma Network. Thanks to Insmed for sponsoring today’s episode.  This podcast is for informational purposes only and does not substitute for professional medical advice. Always consult with your healthcare provider for any medical concerns.