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Patient handout

Mast cell activation syndrome (MCAS)

PRODUCTION

1. Your condition

This handout is for mast cell activation syndrome (mcas). Your care team identified this based on: recurrent episodic typical mast-cell symptoms involving >=2 organ systems (valent 2020 pmid 33261124).

Other reasons your team may use this plan: recurrent unexplained anaphylaxis without an identifiable ige trigger — idiopathic anaphylaxis as a form of mcas (giannetti 2020 pmid 32276688); elevated basal serum tryptase (>11.4 ng/ml) — workup for clonal mast-cell disease vs hαt (lyons 2016 pmid 27749843; chovanec 2023 pmid 36170795); family history of hereditary alpha-tryptasemia or systemic mastocytosis — genetic and clonal workup entry.

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

MedicationStarting doseHowWhenWhat it does
trigger_avoidance_inventoryValent 2020 (PMID 33261124) — heat, exercise, alcohol, NSAIDs, opioids, vancomycin, NMBA, Hymenoptera, foods; personalised inventory drives prevention.
epinephrine0.15 mg IM (peds <25 kg) / 0.3 mg IM (>=25 kg)IM lateral thighPRN for systemic reaction; may repeat 5-15 minValent 2020 (PMID 33261124) — anaphylaxis-grade MCAS events require IM epinephrine first-line; two auto-injectors carried; technique re-taught.
written_mcas_action_planPatient education on early-symptom recognition + step-up therapy + when to use auto-injector + when to seek care.

Plan: MCAS — H1+H2 antihistamine foundation + cromolyn + LTRA + ketotifen + omalizumab; clonal disease via heme-onc

3. When to call your provider

Contact your care team if any of the following happen:

  • Active anaphylaxis -> route to allergy.anaphylaxis.v1 for IM epinephrine + supportive
  • Basal tryptase >20 ng/mL persistent or rising, cytopenia, hepatosplenomegaly -> haematology for bone marrow + KIT D816V
  • Idiopathic anaphylaxis recurrent -> escalate to omalizumab; consider clonal workup

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

  • Anaphylactic-grade event (two-organ system / CV / airway) in known or suspected MCAS(life-threatening)

5. Follow-up

Lifelong chronic-disease maintenance: trigger avoidance + premedication for unavoidable triggers (e.g., contrast studies, surgery, dental procedures — H1 + H2 + cromolyn + corticosteroid premedication regimen), auto-injector + action plan, family screening for HαT, periodic re-evaluation for clonal MC disease emergence.

6. Sources

Guideline: Valent et al 2020 - MCAS Diagnosis, Classification and Management (Int J Mol Sci 2020-11; PMID 33261124) + Giannetti/Akin/Castells 2020 - Idiopathic anaphylaxis as a form of MCAS (J Allergy Clin Immunol Pract 2020-04; PMID 32276688) + Lyons 2016 - TPSAB1 copy-number and hereditary alpha-tryptasemia (Nat Genet 2016-10; PMID 27749843) + Chovanec/Lyons 2023 - personalised tryptase reference ranges (Blood Adv 2023-05; PMID 36170795)

  1. pubmed.ncbi.nlm.nih.gov/33261124
  2. pubmed.ncbi.nlm.nih.gov/32276688
  3. pubmed.ncbi.nlm.nih.gov/27749843