Mast Cell Disease treatment options:
The information on this website is not intended as medical advice. Please consult with your doctor if you believe you have mast cell disease or any disease.
The following recommended treatments are for both mastocytosis and mast cell activation syndrome and are taken from The Mastocytosis Society Canada website:
|First line medical treatments to alleviate symptoms for all patients include:-
- H1 Antihistamines – Reactine (Cetirizine) – Preferred as most effective due to it’s late phase reaction properties.
Alternatives to Cetirizine – Aerius (Desloratadine), Claritin (Loratidine), Allegra (Fexofenadine)
Addition of different class of H1 Antihistamine – Some patients benefit from taking two different classes of H1 concurrently.
- H2 Antihistamines – Ranitidine (Zantac) – Preferred in prescription form as it is most effective based on patient and
- Emergency Extra Medication – Benadryl – Children’s Allergy Liquid (for all ages of patients), Atarax (Hydroxyzine)
- Antidepressant – Doxepin (tricyclic antidepressant) – This drug has powerful antihistamine properties. It crosses
the blood-brain barrier which helps with cognitive impairment & other symptoms.
- Eye Lubricant – Tears Plus, Blink, Refresh – Safest to lubricate dry eyes, stop excessive tear production, protect
tear ducts from becoming blocked or permanently closing;
- Eye Mast Cell Stabilizers – Opticrom (Cromolyn) eye drops (OTC), Zaditen (Ketotifen) or Alocril eye drops (both
- Proton pump inhibitors for acid reflux – Nexium (Esomeprazole) is preferred as it is most effective based on patient
and physician reports.
Alternatives to Nexium – Pantoloc (Pantoprazole), Pariet (Rabeprazole) – reportedly not as effective.
- Nausea medication – Gravol (Dimenhydrinate), Ginger Tablets (Gravol brand or plain), Stemetil (Prochlorperazine)
- Anxiety & Tachycardia – Low dose of Clonazepam or other benzodiazepines, Remeron (Mirtazapine), Lyrica
- Leukotriene blocker for inflammation – Singulair (Montelukast)
- Pain medications – Tylenol Extra Strength (OTC) white tablets only (avoid red dyes, capsules),
Tramadol without Acetaminophen, Nubain (Nalbuphine), Lyrica (Pregabalin), Fentanyl;
- Epinephrine – EpiPens for anaphylaxis. Emergency use only.
- Steroids – For anaphylaxis and stabilization, Skin reactions – Prednisone, Corticosteroid cream
Additional medical treatments as symptoms and illness progress:-
- Mast Cell Stabilizers – Ketotifen is preferred as most effective for entire body, Cromolyn mainly targets gastrointestinal system;
- Breathing medication – Ventolin (Salbutamol), Xolair (Omalizumab) for persistent breathing difficulties and
stabilization of disease.
- Malnutrition/Malabsorption – Total Parenteral Nutrition (TPN) feeding tube, IV Iron infusion, Vitamin B12
- Chemotherapy – Cladribine (Leustatin/2-CdA), Interferon-alfa, Hydroxyurea, Tasigna (Nilotinib), Gleevec (Imatinib), Sprycel (Dasatinib)
- Medications should only be taken as directed and instructed by your physician, whether they are OTC (over the counter/off the shelf) or prescription. Always consult your physicians prior to taking any new medications.
- CALL 911 if you experience life threatening or other serious adverse reactions to any treatments.
- Antihistamines – Most antihistamines come in various strengths and some forms have a built in decongestant. Mastocytosis patients need to avoid decongestants. Consult your physician prior to taking any new antihistamines.
- Antibiotics – These are not well tolerated. However, over the years, masto patients have built a list of antibiotics they’ve found to be safest (varies per patient – these are not an endorsement, just patient reported):-
- Azithromycin (Z-pak)
- Beconase AQ
- Biaxin (eg. Clarithromycin)
- Generics vs. Name Brands – Some patients cannot use generics, some have difficulty with name brands. Under physician guidance, use what consistently works for you. Also, some patients report that they alternately use generic or name brands of their medications, depending on how bad their symptoms are per day.
- Cold Medicines – Generally, these patients cannot tolerate cold or flu medications.
- Atarax (Hydroxyzine) – This is a powerful antihistamine however it is a very strong anticholinergic drug. It has caused heart palpitations or irregular heartbeats in mastocytosis patients. It has also caused elevated or fluctuating blood sugar levels. Use on emergency basis rather than daily if it causes problems.
- Antidepressants – Mastocytosis patients have reported adverse reactions to all types of SSRI antidepressants. They should be avoided.
- Benadryl – This is a crucial first line emergency life saving medication. It is also anticholinergic but not as potent as Atarax. To avoid developing a tolerance to Benadryl, it is not recommended for daily use in any form. We suggest the Children’s Allergy Liquid only as the liquid form works faster than tablets or pills, and it does not have alcohol. The Adult Benadryl Allergy Liquid has alcohol and a flavouring which has bothered many patients. Many patients report that generic forms of Benadryl do not work as effectively.
- Cimetidine – This is a powerful antihistamine we do not suggest. Research has proven that long term use causes permanent vision damage.
- Ginger Gravol – Ginger has salicylates, which may not be safe for those who react adversely to aspirin. Consult your physician about this medication.
- Doxepin – Research has proven (and patients have reported) that this medication may cause heart arrhythmias in some at high doses (over 50mg). We take it in very low dose (eg.5-10mg) and slowly increase under Physician guidance. This drug is effective for mastocytosis patients in low doses. Histamine and other chemicals are dumped by our mast cells during sleep. Taking Doxepin at bedtime is an effective antihistamine with the rare ability to cross the blood-brain barrier. It helps with all symptoms.
- Steroids – Long term use of Prednisone has caused diabetes in some patients. Long term use of Corticosteroid creams has caused thinning of skin. Always report unusual symptoms or complications experienced while using these medications.
- Tramadol – This medication comes with or without acetaminophen. As the liver is hardest hit by mastocytosis, physicians recommend the form of Tramadol *without* Acetaminophen to protect the liver.