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Treatment of Mastocytosis

Systemic mastocytosis is a rare disorder of the mast cells. Mast cells are cells of the hematopoietic system and play a crucial role in defending against infections and in allergic reactions.

Stress as the most common cause of mast cell activation

Systemic mastocytosis is a rare disorder of the mast cells. Mast cells are cells of the hematopoietic system and play a crucial role in defending against infections and in allergic reactions. When mast cells are activated, they can release certain substances (e.g., histamine), thereby fighting off pathogens and also triggering severe allergic reactions—such as those caused by bee or wasp stings—as well as reactions to certain medications. The release of these signaling molecules is precisely regulated to prevent excessive release and, consequently, damage to the body. In mastocytosis, this regulatory mechanism is disrupted due to an acquired genetic change (a mutation in the c-Kit gene), and the mast cells release excessive amounts of these signaling molecules following a stimulus or even without any apparent trigger. Stress appears to be the most common trigger of mast cell activation.

Localized Mastocytosis

In cases of localized mastocytosis of the skin (“cutaneous mastocytosis”), this usually results only in localized changes in the affected skin areas (redness and itching). In systemic mastocytosis, which is characterized by an increase in atypical mast cells even outside the skin, more generalized symptoms, on the other hand, frequently occur. Typical symptoms include: itching, skin redness and a sensation of heat (“flush”), shortness of breath, fluctuations in blood pressure, rapid heartbeat, nausea, vomiting, diarrhea, etc.

Interdisciplinary Treatment

Patients with mastocytosis usually require interdisciplinary care. This can ideally be provided at the USZ through close collaboration among various medical specialties, including allergology, hematology, dermatology, gastroenterology, rheumatology, pathology, and psychiatry. In addition, a regular mastocytosis case conference is held, during which patients are discussed with physicians from all of the above-mentioned specialties.

We have also recently started maintaining a registry to track patients with mastocytosis at the USZ, in order to provide even better treatment. In the long term, a collaboration with the European Mastocytosis Competence Network (ECNM) will also be established for this purpose.

Systemic mastocytosis

Treatment for systemic mastocytosis is primarily symptomatic. The primary focus is on avoiding foods, medications, and situations that, based on experience, can trigger symptoms caused by histamine release in individual cases. In terms of medication, older antihistamines are usually used; their sedative effect is deliberately harnessed to reduce the release of histamine. For the same reason, low doses of benzodiazepines are often used. Today, aggressive forms of the disease are often treated “experimentally” with cyclosporine, corticosteroids, and interferon α-2b—similar to other malignant diseases—even though their effectiveness has not been proven. New medications are now available that can highly effectively reduce the number of mast cells. However, these drugs—which are classified as chemotherapy agents (imatinib, mastinib)—are used only in cases of very aggressive forms of the disease due to their severe side effects and high cost.

PUVA as a Treatment Approach

Another treatment approach is PUVA, a therapy that involves the use of psoralen, a photosensitizing substance, followed by exposure of the skin to UVA radiation.

Patient Brochure

For more information on the treatment and symptoms of mastocytosis, please see our patient brochure. You can also order a printed copy of the brochure.

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Tel. +41 44 255 31 55
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Last updated on June 26, 2026

First published on December 05, 2024

Reviewed by our medical editors