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 are:- syncope, hypotension, full or partial anaphylaxis, persistent and/or escalating pain internally, severe
headaches, vertigo, etc. Severe pain internally was reportedly caused by either enlarged organs such as liver or spleen (common with mast cell diseases), gallbladder attack, painful bladder syndrome, and one case of appendicitis.
With mast cell disorders, the anaphylaxis symptoms and signs are diverse and unique per patient.
The emergency medical treatment cocktail for mast cell disease patients suffering anaphylaxis has been reported by patients to us as continuous administration in emergency 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:-
red and itchy eyes,
difficulty in breathing,
swelling of the tongue, throat, palms of hands and/or soles of feet,
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 disease patients are often unique, it is safest to have an emergency protocol defined in advance by
the patient's physician.
In addition to anaphylaxis, medical professionals need to be aware of the medications, ingredients and preservatives which may complicate patient care, especially during any medical testing, emergency treatments, or surgery. Tables listing potential triggers are in our section entitled Symptom Management. The tables list Nonimmunologic Histamine Releasers and Other Degranulation Triggers, as well as Contact Agent Triggers
of Skin Reactions. A summarized very brief listing is below:-
Analgesics (NSAIDS, Morphine, Codeine)
Ester Local Anesthetics
Antibiotics (Vancomycin, Polymyxin B, Amphotericin)
Alpha and Beta Blockers
Muscle Relaxants (Succinylcholine, Atracurium)
Dextran, Dextromethorphan, Quinine, Preservatives
Other triggers to avoid: - Foods, insect stings, alcohol
Physicians diagnosing all ages of patients with mastocytosis, mast cell activation syndrome, or idiopathic anaphylaxis, have reported two approaches to emergency advice. 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 in the letter to both protect the patient and help guide emergency staff.
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 at any time to advise of any emergency guidelines written by the patient's physician. They are also able to make emergency personnel aware of allergies or other dangers, medications currently used, and provide physician contact information as well as next of kin.
Mastocytosis Society Canada jointly consulted with our lead medical advisor Dr. Gary Sibbald and MedicAlert Canada to establish a standard
engraving and wallet card protocol for mastocytosis patients in Canada nationwide. These protocols will help newly diagnosed patients and MedicAlert Canada understand the priorities for managing emergencies related to our disorder. See the protocol here.
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