Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Barbara, 55-64 Female (Patient) Published: April 03

I was had a skin biopsy in 2009 which confirmed vasculitis. I went to a doctor, who studied my illness with many tests to confirm I was had a skin biopsy in 2009 which confirmed vasculitis. I've been on prednisone and Azathioprine for 2 ½ years. I lost 35 pounds in two months, was always sleeping, and had night sweats. Also, I had a cranberry-colored rash from my toes to my waist, and every blood vessel came up to form an unbelievable rash under the skin. I am now in remission, off the meds, and praying I will stay in remission. I'm thankful for my doctors, who I feel saved my life. Now, I see my doctor every month for blood work. So far – great!

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Comment from: PJM, Female (Patient) Published: April 03

I was tested for second time for Wegener's. I strongly suspect I do have it. I pray I get an answer even if it's not good, because my body is falling apart. I have a hole in my septum and my nose is collapsing. Three doctors thought I was abused, because my nose has a deformity I didn't have two months ago.

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Comment from: Proud/concerned Dad, 25-34 Male (Caregiver) Published: March 14

My son was diagnosed with Wegener granulomatosis (WG) / granulomatosis with polyangiitis (GPA) in April 2009 at age 24, just after graduating from college and starting his first job as an electrical engineer. He's very active and fit, but had flu-like symptoms for about two weeks, then terrible stomach pain that required hospitalization. A kidney biopsy confirmed WG/GPA. After lots of medications and weeks of slow recovery, he's now doing pretty well, all things considered (no relapse yet). His kidneys only function at about 30%, but he hasn't needed dialysis. We don't know how long his kidneys will hold out. I'm very proud of him for how he's dealt with the disease and rebuilt his life, but as a father, I'm also very concerned for his future and what WG/GPA will mean for whatever time he has left. He's happy now and I want him to remain that way, so I do everything I can to stay informed on new treatment strategies.

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Comment from: cincygirl, 55-64 Male (Caregiver) Published: November 19

My heart breaks for you all as I read through your stories. My father passed away in 2002, at 56, from Wegner's granulomatosis - which led to Leukemia after a bone marrow transplant. He had sinus problems as far back as I remember which he always blamed on a broken nose not set properly when he was a child. But around 1987/88 he was diagnosed with WG. He spent the next 12-14 years on/off steroids, Cytoxan, too many drugs to name. For the most part he was lucky that he didn't suffer through kidney failure or lung collapses. He remained very active although he would get winded easily. He did experience nose bleeds a lot - at times lasting 5-8 hrs it seemed. Then also his windpipe had swollen making it hard to breathe, especially with phlegm/colds. Several times he had to be rushed to the ER because he was choking on phlegm. Very scary. In the fall of 2001 he stopped producing bone marrow and had a successful transfer. Unfortunately while trying to get better he got the flu, and with his immune system so low, leukemia took over. Within 48 hours it was in 97 percent of his body. It was only a few days. Diagnosis and the right doctor is KEY!

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Comment from: Mcnabbfamily, 35-44 Female (Patient) Published: September 24

I am a Wegener's survivor that is very sad to hear stories of people like me that were misdiagnosed. I have been treated with rituximab successfully and would simply like to share my experience with other Wegner's granulomatosis patients.

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Comment from: Mulan1, 45-54 Female (Patient) Published: October 11

I had recurring sinus infections for almost 4 years, with nasal crusting. On my 5th sinus vacuum surgery and the 3rd ENT doctor, thought it might be Wegener's. I had fatigue so extreme that I couldn't walk across the room, terrible facial and sinus pain and general feeling of illness. After the Rituxan infusions, I believe I am starting into remission after so many years. I noticed a difference after my first Rituxan infusion, the tiredness was better, the flare ups longer in between and the sinuses sere drying up, the first time in a few years. My initial sed rate was off the charts but my ANCA's were negative and the c reactive protein was not out of line. But my Wegener's is Limited to the sinuses and ears.

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Comment from: 19-24 Male (Caregiver) Published: June 17

My husband suffered recurrent sinus infections for months until we insisted on an ENT referral. The ENT was sure my husband was a chronic cocaine user (never used) because his mucus membranes were so inflamed. Biopsies revealed the Wegener's along with elevated ANCA levels.

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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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