Advocacy

How often should you see your doctor to manage SM?

Susannah Barnett |
Female doctor listening to senior woman's heart in exam room/Getty Images
Courtesy Getty Images
Learn why regular communication with your healthcare provider is key to managing your SM symptoms and triggers.

Living with systemic mastocytosis affects many aspects of daily life, and managing your symptoms and avoiding symptom triggers can be made more difficult if you are not in regular communication with your doctor.

As each patient with SM may experience different symptoms and triggers, doctors and specialists who treat SM will put together a personalized treatment plan that works with each patient’s lifestyle. Along with a treatment plan, regular communication and follow-up appointments with your provider can also help you successfully manage your condition on a day-to-day basis.

SM is a rare white blood cell disorder that affects the mast cells and is diagnosed in adults aged 40 to 50 years. There is no cure, and treatment focuses on symptom management through medication and lifestyle modifications to avoid symptom triggers. Symptoms are the result of severe allergic reactions and can heavily impact quality of life. They most commonly include, skin irritations, gastrointestinal issues, mood changes, heart palpitations, bone and muscle pain, fatigue, headache, lightheadedness and anaphylaxis.

How can my doctor help me manage my SM?

Apart from your primary care doctor, you may do best if you have access to a multidisciplinary team of doctors who intervene based on your symptoms. As SM is a blood disorder, you will likely see a hematologist.

Learn more about SM treatment and care

Dermatologists, allergists or immunologists, pulmonologists and gastroenterologists can also help you manage your diverse symptoms. It’s also vital to prioritize your mental health, as your mental state can have a significant affect on your symptoms. Your primary care doctor may be able to refer you to a mental health professional upon request.

How often you should see your doctor

Your individual experience with SM will help define the level of care you need. Your individual treatment plan will depend on the stage of SM you have and how you are managing your treatment and symptoms.

Following diagnosis, you may have more frequent appointments with your doctor to better understand your disease, learn to manage symptoms, establish a treatment plan and to make any adjustments along the way.

As you become accustomed to living with your disease, your visits will likely become less regular. It is essential, however, that you maintain an open line of communication with your healthcare team. Changes in symptom duration or intensity or unexpected side effects must be reported immediately to avoid sudden worsening of symptoms.

If your SM progresses to an advanced stage or your symptom burden worsens, your doctor may change the treatment plan accordingly and accompany you as you face new challenges. It’s vital to choose doctors who are knowledgeable about SM and who make you feel understood and at ease.

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