I wrote this article to provide an overview of the most common medications prescribed in mast cell disease, so readers are more confident discussing this topic with their medical team. I am not recommending any medication. Always consult your physician and pharmacist before taking medication, even over the counter medication. The chemical name and the most common brand names in Canada/United States are listed. The brand names may be different in other countries. I’ve also indicated if a generic version is available. The generic name will include the chemical name (and usually the company that produces it). Double check this information with your physician and pharmacist.
Good communication with your medical team is essential to find the most effective medications. Clients with the same diagnosis/symptoms will often have a different mix of medication to manage their symptoms. It is extremely important to find a physician and pharmacist that you are comfortable with. The physician/pharmacist’s role is to:
- provide information about the medications,
- discuss any concerns the patient has,
- work with the patient to make decisions about what medications to trial,
- listen to the patient's feedback about how the medication is working.
The patient's role is to:
- inform the medical team of current medications and supplements,
- take the medication exactly as prescribed,
- be systematic (e.g., don't start other treatments at the same time as new medication),
- keep track of symptoms to discuss with the physician/pharmacist.
Many patients are reluctant to take medication because they are concerned about the side effects. Minimizing your symptoms through diet and lifestyle changes (especially relaxation) is very important, but sometimes this is not enough, and medication is necessary. Internet information about side effects is often inaccurate and exaggerated. A knowledgeable pharmacist is usually the best source of accurate information. Medication companies must conduct clinical trials to determine side effects and list any reported side effects on the medication label. Keep in mind that natural supplements can have side effects as well. Unfortunately, these companies are not required to conduct clinical trials and list side effects, which gives the appearance of safety. When I had young children, I was amazed at how many parents would not give their baby Tylenol for teething pain, because of the potential liver damage (only if used at very high doses, over a long period). However, many would give supplements with the potential of completely unknown side effects.
For clients with mast cell activation syndrome, an excellent section on medication is available in Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity (2016) by Dr. Afrin. If you have a willing physician, he/she could use this information to help you through medication trials.
Common medications prescribed for mast cell disease symptoms are listed below. In general, these medications have three different main actions (some of these medications fit into more than one category):
|Stabilize mast cells so inflammatory chemicals are not released||Sodium Cromolyn
|Block the action of specific inflammatory chemicals.||Antihistamines (histamine inhibitors) Leukotriene inhibitors
|Reduce inflammation, regardless of the cause.||Corticosteroids|