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WHAT YOU NEED TO KNOW:
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.
- Steroids are given to decrease inflammation.
- Immunosuppressive therapy may be given to slow your immune system and help prevent organ damage.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Follow up with your healthcare provider as directed:
You may need blood or urine tests to check your kidney function and levels of medicine. Imaging tests may be done to check for infection and organ function. Write down your questions so you remember to ask them during your visits.
You may need to eat foods high in folic acid or take a folic acid supplement. Immunosuppressive medicines often decrease the amount of folic acid in your body. Ask for information on foods and supplements high in folic acid and if you need to take them.
Drinking fluids as directed:
You will need to drink more fluids if you take immunosuppressive medicine. Men 19 years old and older should drink about 3 liters of liquid each day (about 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 liters of liquid each day (about 9 eight-ounce cups). Water, juice, and milk are healthy choices for fluids.
Use lotion or petroleum jelly on your nose if it is dry and crusted. Nasal irrigation may also decrease dryness and crusting in your nose.
Do not smoke:
If you smoke, it is never too late to quit. Smoking harms your heart, lungs, and blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. You may also have unwanted side effects from immunosuppressant medicine if you smoke. Ask for more information about how to stop smoking if you are having trouble quitting.
Contact your healthcare provider if:
- You have a fever.
- You have new sores on your skin or in your mouth.
- You have red and swollen eyes.
- You have questions or concerns about your condition or care.
Seek immediate care or call 911 if:
- 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.
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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.