Systemic mastocytosis care at Mayo Clinic

Your Mayo Clinic care team

Mayo Clinic doctors from several medical specialties work together to provide you with the best care possible. Your team may include specialists in allergic diseases, hematology, dermatology, gastroenterology, pediatrics, neurology, endocrinology and pathology. Although systemic mastocytosis is rare, Mayo Clinic doctors care for about 70 people with some form of the condition each year.

Expert diagnosis

Diagnosis of systemic mastocytosis can be confirmed by finding high numbers of mast cells or high levels of the substances they release in your body, such as tryptase, histamine, leukotriene or prostaglandin. Tests your doctor may use to confirm systemic mastocytosis include bone marrow biopsy, blood tests, urine tests, X-rays, ultrasounds and computerized tomography (CT) scans.

Comprehensive treatment

Treatment for systemic mastocytosis varies depending on the type you have. Basic components of most systemic mastocytosis treatment plans include:

  • Treating and controlling symptoms. Mayo Clinic doctors will help you identify particular factors that may trigger your symptoms of systemic mastocytosis, such as certain foods, medications, insect stings or temperature changes. They will also work with you to help keep your systemic mastocytosis symptoms under control with medications, such as antihistamines, aspirin, and drugs that will counteract the effects of the substances released by your mast cells — such as corticosteroids and leukotriene agonists. Your doctors may also teach you how to give yourself an epinephrine injection in the event you have a severe allergic response when your mast cells are triggered.
  • Regular monitoring. Your Mayo Clinic doctors will regularly collect blood and urine samples from you to monitor the status of your condition. Mayo Clinic is one of the only centers to offer a special home kit that you can use to collect blood and urine samples while you're experiencing symptoms, which gives your doctor a better picture of how systemic mastocytosis affects your body.
  • Bone density measurements. Because systemic mastocytosis can affect your bones and bone marrow, you may be at risk of bone problems, such as osteoporosis. At Mayo Clinic, bone density measurements are a regular component of your treatment.
  • Chemotherapy. If you have the aggressive form of systemic mastocytosis or mastocytosis associated with another blood disorder, you may be treated with chemotherapy medications, which reduce the number of mast cells.

For people who have advanced systemic mastocytosis, a stem cell transplant may be an option.