Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: RCA2, 55-64 Male (Patient) Published: February 24

I am awaiting the results of my blood tests now. Three doctors now suspect Wegener's granulomatosis, my nephrologist, pulmonologist and ENT, due to symptoms such as bloody nose and ears, double vision, lung disease (pulmonary embolism included), stage 3 kidney disease, night sweats, leg thrombosis, anemia (SP), sever joint pain (I thought it was my fibromyalgia), difficulty breathing and rhinitis. Previous blood tests have already revealed elevated blood cells and more. I'm trying hard not to pre-diagnose myself. But at least forewarned is forearmed.

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Comment from: 45-54 Female (Patient) Published: January 30

In September of 2003 I woke up with a migraine headache. It evolved into a fever, body aches, joint pain, swollen legs and ankles, severe cramping of the calves, and bloody discharged from the nose. I was misdiagnosed with a virus, arthritis, and a sinus infection. Finally in early December I saw an arthritis doctor who diagnosed the Wegener's granulomatosis. He referred me to a kidney specialist who ordered a kidney biopsy and ANCA (antineutrophil cytoplasmic antibodies) test. After the diagnosis was confirmed, I was put on an antibiotic, prednisone and Cytoxan. After 10 months of treatment and 2 trips to the hospital for a pulmonary embolism and pneumonia, and a case of shingles, I was taken off of the medications. I am happy to report that my only lingering symptoms are occasional sinus infections and some joint stiffness. Keeping my fingers crossed for good health!

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Comment from: lucky, 35-44 Female (Patient) Published: October 22

I have had Wegner's granulomatosis for 11 years. My initial symptoms were really bad. I had sinus problems, a really bad ear infection, joint pains, night sweats, and fever. The doctor said it was infection and gave me amoxicillin. I ended up in Accident and Emergency and they said I had TB (tuberculosis). After three weeks treatment my symptoms got worse. My brother told the consultant we are not happy and want to move and he decided to do one more test, Wegner's. I was straight away put on IV prednisone and cyclophosphamide for 6 months. I lost all my hair and loads of weight but got better. Year later I had a relapse and was back on chemotherapy tablets. I was on azathioprine for 9 years and my consultant stopped them. Six months later in March 2013 Wegener flare tablets were not working. I Had 2 doses of Cytoxan, 10mg prednisone and antibiotics. I am feeling better but I have sinus problems now. It is not a nice illness to have. I am also on kidney dialysis but can't have transplant due my veins not being good. I still got to live life to the max. I have good days and bad days.

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Comment from: Karen, 55-64 Female (Patient) Published: October 15

I was diagnosed with Wegner's granulomatosis (WG) in 2007. It began with sores in my mouth, ear pain that doctors could find no reason for, nose bleeds, fatigue, weight gain and generally not feeling well. WG attacked my kidneys and I was on dialysis for a while. With treatment I was able to stop dialysis. My kidneys function at about 30% and will never get better. I am still on 5mg of prednisone and will be on it for life. The first year was bad and I was hospitalized for 2 weeks every month. Once I got past the hump in treatment I did very well. I have not been hospitalized even once in the last 5 1/2 years. I still occasionally have nose bleeds, but I can live with that.

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Comment from: 400LDF, 13-18 Male (Caregiver) Published: April 01

My 16 year-old son was recently diagnosed with Wegener"s granulomatosis through a month long stay in the ICU. Lung biopsy was positive along with the ANCA and CRP and elevated ERS of 118. He recently finished a weekly routine of Rituxan infusions. He is on 40 mg of prednisone daily, Bactrim and Norco for pain. We are being referred to a pediatric pain clinic as his pain has been a big issue. His disease is in the sinuses, lungs with bleeding and nodules and questionable kidney involvement. We go to this week to see if the kidneys are now in play. Some days he can barely walk or use his hands.

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Wegener's Granulomatosis - Treatment Question: What was the treatment for Wegener's granulomatosis in you, a friend, or relative?

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