Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

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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Comment from: Leon, 55-64 Male (Patient) Published: November 19

My first experience with Wegner's granulomatosis came 4 years ago. Came home from work and felt like the onset of flu, terrible headache, coughing, no energy at all. After a week, went to ear, eyes, nose, throat doctor. After visits and several painful biopsies he sent me to Wake Forest Hospital and they pulled all test together and came up with Wegner's. After more test they put me on prednisone, and a host of other drugs. Finally, it seems to be in remission, but it flares up from time to time. Joint pains and sinus headaches mostly. Skin rash at times and coughing.

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Comment from: Daisybelle, 65-74 Female (Patient) Published: November 09

I was diagnosed with kidney problems with blood and protein in the urine in large amounts. Was almost in kidney failure, but function has now improved to a reasonable level. After a renal biopsy it was confirmed that I have vasculitis. Now on steroids and chemo tablets and have noticed an improvement in kidney function, but now have difficulty and pain on swallowing.

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Comment from: Alan, 55-64 Male (Patient) Published: July 12

I was finally diagnosed with Wegner's granulomatosis in 200. A kidney biopsy confirmed the condition. You need to see a Consultant Nephrologist (Renal Department). My condition is relatively under control with the occasional 'flare-up,' but is usually brought back under control within a few weeks. I am on a long list of medication, taken daily which controls the condition, however still get occasional pain, spasms, etc., which you learn to live with. I feel I am in very good hands and truly appreciative of the treatment and care I receive.

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Comment from: gayle, 75 or over Female (Caregiver) Published: January 20

My 80 year old father was sick for a month with what he thought was the flu. He finally went to the doctor who did blood work, but he suffered from a stroke before he was diagnosed. It is believed that the vasculitis closed one of the arteries to his brain. He was treated with cytoxan and prednisone, and was making great progress with the rehab from the stroke he died suddenly from arterial dissection.

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Comment from: surviver, 55-64 Female (Patient) Published: July 08

Unusual sneezing all the time. Very tired for no reason. Then a tiny lump came up on the right upper part of my nose. My glands in my throat were swollen for now reason. The worse part was terrific head aches. Its worse than migraine. All I wanted to do was sleep. I wasn't very hungry, considering I like my food. Doctors began treating me for hay fever. I knew it was more than that. Finally after 3 months of suffering with head aches I was admitted to a hospital, where within a couple days diagnosed me with Wegner's grandulamatosis.

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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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