Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Mike's mom, 13-18 Male (Caregiver) Published: August 08

My son graduated high school, and a week later complained of ear pressure. He went to Ready Care a few days later. He was sent home with antibiotic. Several doctor appointments and 25 days from his first Ready Care visit he was admitted to the hospital, and then transferred to a bigger hospital. The doctor got him through tons of tests (tuberculosis, influenza, mold, Wegener's granulomatosis, and urine tests). He has damage to his ear, sinuses, eyes, lungs and kidneys, hoping he is healing in all places. Current treatment, he has had three doses of Cytoxan and is on 60 mg of prednisone/day (down from 120). He has old damage in his lungs from years ago, doctor thought it was asthma.

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Comment from: Nicky, 45-54 Female (Patient) Published: September 07

I had been suffering from constant nose bleeds, join and muscle pain, extreme tiredness among other ailments since September 2014. But it got to the point where I collapsed in agony (April 2016) and taken to Accident and Emergency. My doctor until then treated me for my individual symptoms. The hospital suggested vasculitis and I went back to my general physician's surgery and a different GP who ordered lots of blood work and I was rushed to intensive care with acute kidney failure. I had blood transfusions and a biopsy which confined Wegner's granulomatosis (GPA). I have now had a 3 months course of chemotherapy and I am now taking a maintenance course of azathioprine, prednisolone and vitamin D. I also take myself, cod liver oil, and vitamin C. I am on a strict diet because I was left with 20 percent kidney function but I have improved that up to 40 percent which I will try to maintain. I am half way through reducing my steroids and am experiencing nasty withdrawal symptoms. I have had weight problems from losing too much to piling it on. I still have the moon face but it is going down slightly and I get some muscle pain and tiredness. My eyesight is much poorer too. I still think I am trying to get my head around this awful condition.

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Comment from: God is always good, 45-54 Female (Patient) Published: January 26

It was 3 year ago I went to the doctor, I could not breathe. They put me on antibiotics, but I did not get better only worse. The next year I could not walk 1/3 of a block without stopping, my lungs were not working well and were scarred. The diagnosis was Wagner's granulomatosis. I started Rituxan infusions, had 4 once a week for a month, and they did not work. Six months later I had 3 more infusion once a week and during this time I lost my job from being so sick. They put me on azathioprine. I have all the symptoms and get worse day by day. I stay in bed most days. This disease has taken over my life, I have almost lost everything, and I will be homeless soon.

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Comment from: A92C4Ragtp, 55-64 Male (Patient) Published: November 30

I was diagnosed with Wegener's granulomatosis in March 2014. My symptoms were nose bleeds, fever, fatigue, coughing and shortness of breath. I was being treated for a sinus infection by my general physician and was prescribed antibiotics. It didn't help and I was sent to get bloodwork done. Results showed acute kidney failure! I was hospitalized and given 7 plasmapheresis treatments as well as 6 IV Cytoxan treatments. I was also put on 60 mg prednisone and Bactrim. I am down to 5 mg prednisone now. I have been on 150 mg of Imuran since July 2014. I am in total remission now (thank goodness) but I take a 2 or 3 hour kip (nap) every afternoon. If my blood test numbers continue to stay where they are, my nephrologist will wean me down 50 mg every 4 to 6 weeks starting in April 2016 to 0! Can't wait! I was very fortunate that it wasn't in my lungs too.

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