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What is the evidence for MCAS in long covid? Bethan Myers, Haematology Consultant, University Hospitals Leicester On behalf of Mast Cell Action Support OrganisationTalk Summary • What is MCAS? • What is the relationship between MCAS, long covid and PoTS? • What tests and treatments exist (and are available in UK…) • Case study brief commentsWhat is Mast Cell Activation Syndrome? (MCAS) Mast cells Brain Connective tissues Bone pain Fibromyalgia/CFS Female genital tract Heterogeneous innate immune cells occur in connective tissues throughout the body And can cause symptoms anywhereDefinitions of Mast Cell Activation Syndrome MCAS forms part of a spectrum of mast cell disorders. Mast cell activation also occurs in mastocytosis, HT & other conditions (MCAD) (Molderings, Afrin). Mast cell receptors (>200) and mediators (>1000) result in excessive release of inflammatory mediators, responding to triggers which are not typically harmful, eg foods, perfumes, stress, (Ibelgraufts,H). Wide range of symptoms affect multiple systems in the body. Strong associations with PoTS and hEDS. Specific triggers & symptoms in MCAS very variable, in the same person over time, including number of triggers.Diagnostic criteria 1. Multiple symptoms in keeping with the diagnosis in at least two organ or tissue systems 2. Evidence of mast cell mediators in raised amounts: tryptase, 24hr urine histamine metabolites, or prostaglandin D2/DM/F2 3. Response or partial response to mast cell stabilisers/mediator blockers (Theorides, Valent, Afrin)What is the relationship between MCAS and long covid? Mast cells: MCsPost COVID-19 illness may be rooted in mast cell activation syndrome; Afrin, Weinstock, Molderings Int J Infect Disease Sept 2020 Organ/system Symptom/finding Constitutional Fatigue, fevers, chills, weight loss, weight gain • MCs activated by SARS-CoV-2 Conjunctivitis, rhinitis, sinusitis, dysosmia/anosmia, tinnitus, hearing loss, • MCs may be driver of acute Ears, nose and throat dysgeusia/ageusia, sore throat hyperinflammation in COVID-19 Neurologic Headaches, migraines, brain fog, anxiety, depression, insomnia, seizures Cardiovascular Chest pain, palpitations, hypotension • Drugs with activity against MCs or Pulmonary Cough, dyspnoea, wheezing mediators are helpful in these patients Urogenital Frequency, urgency, dysuria, pelvic pain Oesophageal Heartburn, dysphagia, globus, chest pain • MCAS patients had less severe disease Stomach Dyspepsia, nausea, vomiting in acute COVID Small intestine/colon Bloating, food intolerance, abdominal pain, diarrhoea, constipation Hepatic Elevated transaminases, hepatomegaly • Suggest MC treatment may help in Salivary Glands Swelling Long COVID: highlighted overlap in Lymphatics Lymphadenopathy symptoms with MCAS & Long COVID Dermatologic Flushing, pruritis, urticaria, haemangiomas, nodules, rashes, alopecia Musculoskeletal Myalgias, arthralgias, oedemaLong COVID symptom graphic: Red: shared with MCAS. Green: general MCAS symptoms. link with long COVID, Br.J.Hospitalhe Medicine in print, Soumya Arun , Abbie Storan, Bethan MyersMast cell activation symptoms are prevalent in Long-COVID . Weinstock L, Brook J, Walters A, Goris A, Afrin L, Molderings G. Int. J Infect. Diseases. 2021;112:217-226 Adults in LC-focused FB support groups recruited for online assessment of symptoms before and after COVID-19: 136 LC, 89% F 136 controls, 65% F 80 MCAS patients 85% F • Pre-COVID-19 LC subjects & controls had identical MCA symptom and severity analysis. • Post-COVID-19 LC subjects & MCAS patients prior toRx had identical MCA symptom and severity analysis • MCA symptoms were↑ in LC, mimicked symptoms & severity reported by patients who have MCAS. • ↑ activation aberrant mast cells induced by SARS-CoV-2 infection by various mechanisms may underlie part of pathophysiology of LC, suggesting routes to effective Rx Mast Cell Action Survey 2022 ▪ Since COVID-19, a significant influx of people contacted Mast Cell Action for information & advice re MCAS symptoms or diagnosis, after being infected with Covid ▪ An investigative survey was circulated online to medical professionals affected by Long Covid with the purpose of exploring the potential link between the two conditions 32 responses to survey about symptoms of Long COVID, including diagnoses & investigations prior to, and following, their COVID-19 infection • 24/32 respondents were female, 7/32 male and 1/32 identified as another gender • The majority aged between 40–49 years (n=15, 47%); 30–39 years (n=10, 31%) • 16/32 [50%] experienced the acute phase of coronavirus infection for 15 days or more • Most did not require hospital care (n=27) and/or did not require oxygen as part of their care (n=29) Results: Body systems affected by Long COVID Bloating, stomach cramps, constipation, GI reflux, food allergies/intolerances Gastrointestinal Musculoskeletal & Skin Muscle pain, urticaria, pruritus Respiratory SOB, wheezing, nasal congestion, eye itching Cardiovascular Tachycardia, orthostatic intolerance, palpitations Neurological Cognitive impairment, fatigue, headaches, 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% sleep disturbances, peripheral neuropathy Following infection with COVID-19: • 24/32 had ECG testing for dysautonomia • 14/32 have been diagnosed with PoTS • 5/32 have been diagnosed with MCAS • 18/32 had BP & 24-72 hr ECG assessments • 4/32 had their tryptase tested • 5/32 have been diagnosed with ME/CFS Prior to Covid 6/32 respondents had a diagnosis of hypermobility To improve the lives of those living with MCAS Conclusions: 1. Based on this small sample size, MCAS appears to be a condition that overlaps with a diagnosis of Long COVID (and PoTS), as described by others 2. Unknown if COVID-19 infection resulted in novel development of MCAS or caused an escalation of an underlying condition. Pre-existing health conditions indicate virally-induced escalation likely for some individuals 3. Assessments for PoTS were undertaken in a high proportion of patients, whereas clinical assessment for MCAS is less well established and was undertaken with lower frequency 4. The multi-system profile of Long COVID – particularly where allergic &/or inflammatory symptoms of the GI tract, respiratory system and skin are present – indicate that a wider assessment for mast cell activation could be considered 5. More research is needed! To improve the lives of those living with MCASWhat tests and treatments exist (and are available in UK…)Available tests (NHS) Blood: Serum tryptase Chromogranin A Urinary N methyl histamine Prostaglandins DM, D2, F2T reatments for MCAS Mast cell mediator blockers Other • Avoid triggers; epipens • H1 + H2 receptor antagonists • Mast cell stabilisers • Leucotriene inhibitors (montelukast) • Low Dose Naltrexone Treatments • Diet: fresh not frozen Avoid: processed foods, high histamine foods • Mindfulness; other coping strategies • Service dogs • (IVIG; Imatinib; Supplements block histamine: DAO)Treatments – mast cell stabilisers • Sodium cromoglycate – various formulations: capsules, (inhaler), eye drops, lotion, (nebulised) • Ketotifen (zaditen) + antihistamine activity tablets, liquid, eye drops • Bioflavonoids: Quercetin (+vit C), luteolin • Vitamin D – contributory factor • (Vitamin C - Increases Diamine Oxidase) • (Aspirin)Case History: treatment suggestions Some symptoms may be related to MCAS Fever, cough, breathless, no taste/ smell June 21. Fatigue, brain fog: Magnesium; Low dose Naltrexone Fever settled after 1 week but still Urticaria: H1 blockers (consider H2 also) breathless, though less than before. SOB: Montelukast fluctuating symptoms include: • Fatigue and brain fog Mental health: Listen to patient’s concerns; • Fast palpitations during the day when active • Heavy chest pain. refer for psychological support; connect with friends • Light-headed when standing • Urticarial type rash Chest pains, dizziness • Insomnia palpitations: ECG; Refer cardiology opinion • Prickling pain, pins and needles in lower legs and arms • Exercise intolerance-struggles with one flight Neurology symptoms: ?LDN; check B12 etc of stairs Work – phased return; letter of support; guidance for • Pre COVID atopic symptoms employerThank you for your attention Questions?