Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

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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Comment from: wendy, 35-44 Female (Patient) Published: September 01

I am 44 years old and was diagnosed with Wegner's granulomatosis in August 2013 after the family doctor noticed nose caving in and crusting nose bleeds. So tests were run and sedimentation rate was 130 and C-reactive protein was in 40s but my ANCA was negative so I was sent to ENT for biopsies. He did tests which showed vasculitis and I was sent to rheumatologist and they said it was Wegener's granulomatosis. I was put on Cytoxan, Bactrim and prednisone. I also had severe anemia and very, very low iron, almost depleted by body of all iron, sleep apnea, etc. In May 2014 counts bottomed, so I had to go to hospital for fluids. I was feeling horrible so was off medications for a couple months then started methotrexate and prednisone thinking all was going good and remission, but late that year started having some breathing issues. In March I went to pulmonologist and he blew things off. I was wheezing every other breath and he said I had to lose weight and put me on another inhaler. I was upset as I couldn't do anything for no air. I just had a second opinion from another doctor who did some surgery and, oh my goodness, it feels so good to be able to breathe after months of not being able to. New ENT went down and took tissue, gave steroid shots and a balloon to help with swelling. I did great. I so hate this disease but still have negative ANCA and now just trying to deal with it and get things done.

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