Patient Comments: Wegener's Granulomatosis - Treatment

What was the treatment for Wegener's granulomatosis in you, a friend, or relative?

Comment from: Mucjud13, 55-64 Female (Patient) Published: June 02

Update on my treatment for Wegener"s granulomatosis: the Imuran after several months spiked my liver enzymes to 88! My rheumatologist called and I was to stop immediately my 150 mg a day. About 5 weeks later, I was switched to Rituxan Infusions. All this happened recently between February 2014 and present May 2014.

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Comment from: K M, 55-64 Male (Patient) Published: April 11

I was diagnosed in 2005 with Wegener"s granulomatosis after multiple sinus infections, fevers and sickness. Doctors kept giving me antibiotics but I kept getting sicker. I was on Cytoxan and 100 mg prednisone for a year which caused necrosis of my hip. I had a hip replacement. Also, now I have severe peripheral neuropathy. I felt better but remission did not last and I ended up in hospital for Rituxan infusions. My mental capacity has been affected, as well as my stamina. The doctor wants to repeat Rituxan treatments again. I really don"t want to, but as I felt better and tried to do more daily, I am now having bloody discharge from sinuses again. It"s been a battle with ups and downs. I am grateful for the days I do feel pretty good.

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Comment from: Hailee, 25-34 Female (Caregiver) Published: March 14

My uncle had Wegener"s granulomatosis disease when I was 5. While I was right next to him he died from it because they didn"t have a cure. I"m 13 now and writing a report about Wegener"s disease.

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Comment from: Marsha, 19-24 Male (Caregiver) Published: February 28

My son was diagnosed with Wegener's granulomatosis when he was 15 years old. He suffered from sinus problems and severe joint pain and fatigue that made it impossible for him to go to school or even put his clothes on. He was very athletic before this happened and was devastated. It took the doctors 6 months before he was diagnosed. The ENT doctor did a biopsy on him and confirmed Wegener's. He is now 19 and over the past 4 years has had lung and kidney affected and narrowing of the airway. He has had 5 surgeries in the past 2 years to keep his airway open. They have tried every drug there is to treat Wegener's. He went about a year in remission, but has started to have joint pain again and had 2 surgeries in 4 months for throat dilation. It is very hard to see my son suffer with this disease, it just doesn't seem fair. Right now he is on 60mg prednisone and 2000 CellCept daily.

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Comment from: alive 2014, 55-64 Female (Patient) Published: January 08

In the summer of 2012 I developed all the symptoms of WG (Wegener's granulomatosis) within a 4 week period. After being treated for the various infections, "blood spots" appeared on my fingers and feet. My general physician sent me for a chest x-ray and CT scan, and made an appointment with a rheumatologist that was familiar with WG. By September I was being treated with Rituxan, steroids, and Bactrim. I had to have a second round of Rituxan in Feb. 2013, and have been in remission since then. I am grateful for an early diagnosis.

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Comment from: Marco, 75 or over Male (Caregiver) Published: January 03

My mother had relatively few symptoms, except for loss of appetite and weight loss for about 2 to 3 months. She was also dizzy but that was attributed to her blood pressure medication making her pressure too low. Her doctor did blood work and sent her to a nephrologist saying she was in renal failure. She was diagnosed with Wegener's; had plasmapheresis and 2 treatments of Cytoxan so far, and is still on high dose of steroids. She seems a little better but she is still very weak, and is experiencing short term memory loss and some confusion. She's scheduled to see a neurologist in 2 weeks.

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Comment from: jro, 13-18 Female (Caregiver) Published: January 02

My daughter at fourteen was diagnosed with Wegener's granulomatosis two months after exhibiting symptoms. Her symptoms were, ear infection, nose bleeds, night sweats, joint pains with no swelling and reddish purple rash, that was not raised, on her feet and hands and red bloodshot eyes. She is now being treated through children's memorial hospital and has had 4 doses of IV rituximab with prednisone to hopefully put this in remission.

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