Mastocytosis - Symptoms 

Symptoms of mastocytosis 

Mastocytosis causes a wide range of symptoms which can vary depending on whether you have cutaneous or systemic mastocytosis.

Cutaneous mastocytosis

The main symptom of cutaneous mastocytosis is skin lesions. A skin lesion is any type of abnormality that affects the skin. Types of lesions known to occur in cutaneous mastocytosis include:

  • small areas of skin that change colour (macules)
  • small firm raised bumps (papules)
  • larger raised red bumps (nodules)
  • large raised areas of skin noticeable to the touch (plaques)
  • blisters (collections of fluid that develop inside the upper layer of the skin)

Lesions normally develop on the trunk (the body, excluding head, neck and limbs). The lesions, known as urticaria pigmentosa, are usually yellow-tan to reddish-brown in colour, and can range from 1mm to several centimetres in size.

The number of lesions that develop on the skin vary widely. In some cases, only one lesion was reported whereas in another case, the person had more than 1,000 lesions.

Stroking the affected areas of skin can make it swollen, itchy and red.

Systemic mastocytosis

If you have systemic mastocytosis you will have sudden attacks of symptoms that last around 15-30 minutes. Most common symptoms during an attack are:

  • hot flushing – described as a dry feeling of heat, rather than the sort of wet heat you experience when sweating
  • palpitations (irregular heartbeat)
  • lightheadedness

Less common symptoms during an attack include:

  • headache
  • shortness of breath
  • chest pain
  • nausea
  • diarrhoea 

Once the attack has passed, you will probably feel lethargic (sluggish) for several hours.

These attacks are caused by the mast cells suddenly releasing excessive amounts of histamine, usually after you are exposed to certain triggers. Triggers known to cause attacks include:

  • physical factors, such as heat, cold, fatigue and physical exertion
  • emotional factors, such as stress and excitement
  • certain foods, such as cheeses, shellfish and spices
  • bites and stings, such as flea bites or a wasp sting
  • infection, such as the cold or flu
  • alcohol
  • certain medications, such as ibuprofenaspirin and antibiotics

Abnormal mast cells in your bone marrow and organs can also cause related symptoms, including:

  • stomach pain caused by peptic ulcers
  • loss of appetite
  • weight loss
  • swelling of the liver, which can cause jaundice (yellowing of the skin and eyes) and make you feel lethargic
  • swelling of the spleen, which can cause abdominal (tummy) and shoulder pain
  • joint pain
  • swelling of the lymph nodes
  • weakness
  • fatigue
  • changes in mental state, such as confusion, irritability, poor attention span and impaired memory
  • urinary symptoms (needing to pass urine frequently, or pain when passing urine)

Low blood pressure (hypotension)

Some people with severe symptoms will experience a sudden drop in blood pressure during an attack. Low blood pressure (hypotension) can trigger a number of associated symptoms, such as:

  • dizziness
  • fainting (a sudden, temporary loss of consciousness)
  • blurred vision
  • confusion
  • general weakness

Anaphylaxis

If you have either cutaneous or systemic mastocytosis, you have an increased risk of anaphylaxis (a severe allergic reaction). Therefore it is important to look out for the initial symptoms of anaphylaxis, which include:

  • breathing difficulties
  • dizziness
  • swollen eyes, lips, genitals, hands, feet and other areas (called angio-oedema)
  • itchy skin or nettle rash (hives)
  • a strange metallic taste in the mouth
  • sore, red, itchy eyes
  • changes in heart rate
  • a sudden feeling of extreme anxiety
  • unconsciousness due to very low blood pressure
  • abdominal cramps, vomiting or diarrhoea
  • fever

If you think you are experiencing anaphylaxis, you should administer your adrenaline auto-injector (if you have one) and call 999 immediately to ask for an ambulance.


Page last reviewed: 28/06/2012

Next review due: 28/06/2014

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