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The following is general information shared by patients regarding experiences and treatments related to their health emergencies caused by their mast cell disease. It does not constitute medical advice. 

The most common types of reported health emergency experienced by mast cell disease patients include syncope, hypotension, full or partial anaphylaxis, persistent and/or escalating pain internally, severe headaches and vertigo.  With mast cell disorders, the anaphylaxis signs and symptoms are diverse and unique per patient.

The emergency medical treatment for mast cell disease patients suffering anaphylaxis has been reported by patients as continuous administration of the following: Epinephrine, Benadryl, Ranitidine, Prednisone, and sometimes nausea medication and/or oxygen nebulizer. Dosages are unique per individual. Some patients report tolerating steroids well while others do not. Some patients reported being unable to have epinephrine due to their symptom presentation.  Many patients tend to be unique in responding to emergency measures.

The National Institute of Allergy and Infectious Diseases (USA) has a good summary of anaphylaxis symptoms as they pertain to Mastocytosis patients, defined as follows:  Anaphylaxis is a severe, systemic, hypersensitivity reaction caused by release of mediators from mast cells and basophils. Signs and symptoms of anaphylaxis may include:

  • generalized flushing
  • hives
  • stuffy nose
  • red and itchy eyes
  • difficulty in breathing
  • swelling of the tongue, throat, palms of hands and/or soles of feet
  • gastrointestinal cramping/pain
  • lightheadedness
  • loss of consciousness

Reference: Blood Factors in Mastocytosis and Unexplained Anaphylaxis and Flushing

In hospitals, anaphylaxis is sometimes undertreated which creates a rebound reaction within hours.  Because these are rare disorders and mast cell patients are often unique, it is safest to have an emergency protocol defined in advance by the patient's physician.  In addition, medical professionals should be aware of the medications, ingredients and preservatives which may complicate patient care, especially during any medical testing, emergency treatments or surgery.  

Physicians diagnosing patients with Mastocytosis, MCAS, or IA have reported two approaches to emergency advice.

  1. The current approach is to write a letter on physician letterhead, specific to their patient, outlining exact medications and procedure(s) to follow to treat any emergency situations. The patient is advised to have several copies and carry it with them at all times in case of emergency. Paramedics and hospitals are expected to follow the instructions on the letter.  If the letter is too specific, further complications or rebound reactions may not be addressed in emergency.  The physician needs to include reference to this possibility with further instruction to both protect the patient and help guide emergency staff.
  2. An additional or alternative approach is to advise all patients to register with MedicAlert Canada and wear an emergency identification bracelet with the proper engraving.  MedicAlert has electronic records and is able to speak for patients immediately to advise of any emergency guidelines written by the patient's physician. They are also able to make emergency personnel aware of allergies, other dangers, current medications, physician contact information, and next of kin.  Standard engraving and wallet card information for mast cell patients can be found here. 


The Canadian Society of Allergy and Clinical Immunology (CSACI) has a great publication entitled Anaphylaxis in Schools and Other Settings which is very useful in understanding anaphylaxis, signs, triggers and emergency protocols.