Living With Systemic Mastocystosis

Understanding systemic mastocytosis

Systemic mastocytosis can be exhausting to live with. It makes your body’s mast cells damage your tissue instead of protecting you like they should. This can cause a type of allergic reaction inside your body. These flare-ups happen even if you’re not exposed to any allergies. In a way, your body thinks it’s allergic to itself.

Managing systemic mastocytosis

Your healthcare providers will treat systemic mastocytosis, no matter how it affects you. They’ll work with you to find a combination of treatments that help you feel like yourself and prevent organ damage. You’ll need regular checkups to keep an eye on any changes in your body or on your skin.

Medications

Over-the-counter or prescription antihistamines can relieve skin symptoms. Your provider may suggest stronger medications like corticosteroids to calm down your overactive immune cells. You might also need targeted therapy if the systemic mastocytosis causes any type of cancer.

Avoiding triggers

Nothing you did caused the systemic mastocytosis. But you might be able to manage how often it affects you. Knowing what sets off symptom flares can help you avoid them. You can try to avoid any medications, foods or certain types of clothes if you know they cause reactions. It might be harder to avoid triggers like stress, exercise or temperature changes, but your providers can help.

Keeping a journal can help you keep track of everything. You’ll probably need to carry an epinephrine auto-injector with you at all times in case you have a severe reaction.

Low-histamine food plan

Tweaking what you eat can help control histamine in your blood. A low-histamine eating plan includes lots of fresh and unprocessed foods. You may need to avoid certain foods and drinks or eat more of some things. Your provider or dietitian will help you tweak your day-to-day eating plan to manage systemic mastocytosis flare-ups.

Surgery

You may need surgery to remove your spleen if your overactive mast cells damage it. In severe cases, your provider may recommend a stem cell transplant. This resets your body’s immune system so you develop a new one.

Work with your care team

To feel your best, you’ll need to visit a combination of primary care providers and specialists. Lots of people work with a rheumatologist to help them manage systemic mastocytosis. Your care team will include other specialists depending on where you have symptoms. A dermatologist helps manage any skin symptoms. Your cardiologist keeps an eye on your heart health. And a mental health provider can help you cope with psychological issues.