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WHAT YOU NEED TO KNOW:
What is Wegener's granulomatosis?
Wegener's granulomatosis (WG) is a rare blood vessel disease where your blood vessels are inflamed. Small lumps called granulomas may also form when the cells lining your blood vessels die. This can cause a decrease in blood flow to your organs, most commonly your respiratory tract, lungs, and kidneys.
What may cause WG?
The exact cause of WG is not known. Healthcare providers think that an abnormal immune response, such as an infection, may lead to WG.
What are the signs and symptoms of WG?
You may have any of the following:
- A cough or coughing up blood
- Blood in your urine or decreased urination
- Body aches and fever
- Ear and sinus infections
- Red, swollen, burning, or painful eyes
- Runny, sore nose and nosebleeds
- Shortness of breath and chest pain
- Skin and mouth sores
How is WG diagnosed?
- Blood and urine tests are done to check for infection, kidney function, and antibodies to WG.
- A chest x-ray checks for lung damage that may be caused by WG.
- A biopsy may be done to check for damage caused by WG. A tissue sample from your affected organ is taken and sent to a lab for tests.
How is WG treated?
- Steroids are given to decrease inflammation.
- Immunosuppressive therapy may be given to slow your immune system and help prevent organ damage.
- Plasma exchange is done to separate the plasma in your blood from your blood cells. Plasma is the liquid part of your blood. Your blood cells are then returned to your body and your body creates new plasma. Plasma exchange may be needed if you have life-threatening organ damage. Ask for more information about plasma exchange.
- Surgery may be needed to help control nosebleeds or repair damage to your nose. You may also need surgery to repair damaged tissue in your airway. A kidney transplant may be needed if WG causes your kidneys to fail. Ask for more information about surgeries to treat the effects of WG.
What are the risks of WG?
Granulomas may block blood flow to other organs and damage your organs and tissues. You may have skin problems, hearing and vision loss, and you may have a heart attack. Your lungs may not function properly. The inflammation and granulomas may lead to kidney failure and could be life-threatening.
When should I contact my healthcare provider?
- You have a fever.
- You have new skin or mouth sores.
- You have red and swollen eyes.
- You have questions or concerns about your condition or care.
When should I seek immediate care or call 911?
- You have blood in your urine or are urinating less than normal.
- You have new or increased hearing loss.
- You have worse vision or vision loss.
- You have sudden chest pain or shortness of breath.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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