Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Mdwyer, 25-34 Female (Patient) Published: April 22

In April of 2010 I started having trouble breathing, I thought it was a pulled muscle from carrying my sick six year old son around Wal-Mart. A few days later it was so bad that I had to go to the doctor. He sent me for some lab work, within the hour he called me and said I needed a CT because he thought I had a blood clot. From my CT they sent me straight up to my doctor's office and he told me I had pneumonia. I had to go to his office every day for a week for shots in my butt. I was only getting sicker. He sent me to a lung doctor who put me in the hospital. I was there for a little over a week with IV steroids. I was only getting a little better. I was getting married two weeks after I got out of hospital. I continued to get sicker. They did another CT and the mass that they thought was pneumonia was growing. I then had a PET scan. That came back showing cancer. I had an open lung surgery on June 2, 2010. When I came out of surgery they said good news is it is not cancer, bad news is I do not know what it is. They did however take a portion of my lung because it had died. I went for my follow up on July 1 (my birthday) and was told that it was Wegner"s granulomatosis. I then had to start Cytoxan for three months, then a maintenance drug. It did not work and it came back, so we did the Cytoxan again for three months with another maintenance drug. And again it came back, but this time not just in my lungs, it was now in my sinuses. I then did 4 weekly doses of Rituxan and the whole time I was on between 40 and 60 mg of prednisone a day! The Rituxan lasted about a year and a half. I just finished another round of the Rituxan and have gone from 60 mgs of steroids down to 10, but I have developed more symptoms as I have gone off steroids, my ears are hurting and my vision has changed a lot, I get spots all over my body. My doctor said that I may have to do the Cytoxan again also. I am glad to say that I have not had kidney involvement, but this feeling great one day and then like you have been pulled out of the gutter the next is really getting old!

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

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