What is Wegener's granulomatosis?
Wegener's granulomatosis is a rare disease of uncertain cause. It
is characterized by inflammation in a variety of tissues,
including blood vessels (vasculitis). Inflammation damages vital
organs of the body.
Wegener's granulomatosis primarily affects the upper respiratory
tract [sinuses, nose, trachea (upper air tube)], lungs, and
kidneys. Other organ systems that can be affected by the disease
include the nervous system, ears, eyes, heart, and skin.
Wegener’s granulomatosis usually affects the upper respiratory
tract (sinuses, nose and trachea), lungs and kidneys. Not all
patients will have all sites affected.
Who is affected by the disease?
Wegener's granulomatosis can affect people of all ages from
childhood to adulthood. It affects men and women equally.
What are the symptoms?
The symptoms of Wegener's granulomatosis and their severity vary
among patients. General signs of the disease may include:
Loss of appetite
Weight loss
Fever
Fatigue
Most patients first notice symptoms in the respiratory tract.
Symptoms may include:
Persistent runny nose (also called rhinorrhea) or the formation of
nasal crusts and sores
Nasal or facial pain
Nose bleeds or unusual nasal discharge, caused by inflammation of
the nose or sinuses
Cough that might include bloody phlegm caused by upper airway or
lower airway (lung) inflammation
Chest discomfort
Middle ear inflammation (also called otitis media), pain, or
hearing loss
Voice change, wheezing, or shortness of breath caused by
inflammation of the trachea
Other possible symptoms include:
Eye inflammation
Joint pain (arthritis) or muscle pain
Rashes or skin sores
Kidney inflammation*
Although kidney inflammation is common, it is not usually
associated with symptoms, such as pain.
How is it diagnosed?
Wegener's granulomatosis has symptoms similar to a number of other
disorders, which may make it difficult to diagnose. However, for
the most effective and successful treatment, early diagnosis is
critical.
It is the combination of symptoms, results of physical
examinations, laboratory tests, X-rays, and sometimes a biopsy
(sample) of affected tissue (skin, nose, sinus, lung, or kidney)
that together prove the diagnosis of Wegener's granulomatosis.
Following treatment, these factors are also critical in judging
whether the disease is active or in remission.
A positive blood test for antineutrophil cytoplasmic antibodies (ANCA)
can support a suspected diagnosis of the disease. However, this
blood test does not by itself prove the diagnosis of Wegener's
granulomatosis or determine disease activity.
Other tests that influence a doctor's judgment of disease activity
include:
Measures of anemia (red blood cell count)
Sedimentation rate (the speed in which blood cells settle in a
vertical glass tube) Urinalysis
Chest or sinus X-rays
Sometimes the lungs may become abnormal even though there are no
symptoms such as cough or shortness of breath. Therefore, it is
important to periodically have lung X-rays if you are diagnosed
with Wegener's granulomatosis - even if you don't have any
symptoms of lung disease.
What are the treatments?
Because Wegener's granulomatosis is often a life-threatening
disease, it is treated with a variety of powerful drugs that have
been shown to be life-saving.
Treatment usually includes corticosteroid medicines, such as
prednisone, and chemotherapy drugs, such as cyclophosphamide or
methotrexate. These drugs suppress the immune system and usually
induce remission (the complete absence of all signs of the
disease). Improvement usually occurs within days to weeks. When
the disease is in remission, patients will reduce the dosage of
these medicines, but will continue treatment until the disease has
been in continuous remission for one year.
The treatment used for Wegener's granulomatosis has also been
successfully applied to other vasculitic diseases.
What are the side effects of treatment?
Because the treatment drugs suppress the immune system, there is
an increased risk of developing serious infections. Prednisone can
also cause weight gain, cataracts, brittle bones, high blood
pressure, diabetes, and changes in mood and personality.
Cyclophosphamide can cause sterility, bladder irritation, and
bleeding, and even cancer of the bladder. Methotrexate can cause
liver irritation. Cyclophosphamide and methotrexate can each cause
changes in blood counts and sometimes lung inflammation.
Because the medicines used to treat Wegener's granulomatosis can
have serious side effects, patients are monitored closely by their
doctor. The dosage of medicine is adjusted as needed throughout
the course of treatment.
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