Patient Comments: Wegener's Granulomatosis - Treatment

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

Comment from: Alice, 35-44 Female (Caregiver) Published: October 21

My sister was not diagnosed early, because doctors did not find the cause of her symptoms. Consequently, her kidneys failed first, then her lungs and finally she died in a week. If doctors had known she suffered from Wegener's granulomatosis disease, she would be alive now.

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Comment from: SS, 65-74 Female (Caregiver) Published: July 14

My family member was ill for over a month before she was diagnosed with Wegener's granulomatosis. They tried cyclophosphamide, (I think that's what it was) but she had a bad reaction, so they put her on rituximab. She has been doing well with preventative Rituxan treatments every 6 months. After all that I've read, I feel this may be the best treatment available for this illness. I hope this helps you. Best wishes to all of you.

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Comment from: escape1965, 65-74 Female (Patient) Published: June 30

For Wegener's granulomatosis prednisone, Cytoxan, and mycophenolate were the treatment for the disease process and then many other medicines to care for the collateral damage, i.e., all body systems were affected.

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Comment from: JudyF, 65-74 Female (Patient) Published: February 24

I was diagnosed with Wegener's granulomatosis (WG) in 1999 and put on the standard cortisone/chemotherapy treatment which did very little. My doctors were getting very worried when a medical professor friend of ours found an article in a British medical journal about a monoclonal antibody treatment which was being trialed in Cambridge for recalcitrant cases of WG. We went to Cambridge and I received the treatment and have had no symptoms ever since. I am on no medication and don't have to see my specialists at all. I can't understand why this treatment isn't more widely used.

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Comment from: worriedwife, 25-34 Female (Caregiver) Published: June 25

My husband was diagnosed with Wegener's granulomatosis almost 6 years ago. It started with headaches, legs cramps, and red spots all over his legs. He started to get crusting in his nose before he was hospitalized for 3 months dialysis for failed kidneys. The rheumatoid arthritis doctor put him on Cytoxan for 3 years. He went into remission. Well, lo and behold, his disease has reared its ugly head again. He is getting the vasculitis again. The doctor will not put him on Cytoxan anymore. We are attempting Rituxan to see if it will help again.

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Comment from: cocopuff, 55-64 Male (Caregiver) Published: November 06

My husband was diagnosed with Wegener's granulomatosis in April 2015 while we were on vacation. He spent two weeks on a ventilator and another two getting him well enough to fly home. His kidney doctor was concerned about the side effects of his drugs and weaned him from them. He had two good weeks before he relapsed and had to be readmitted to hospital in mid-July. They put him into ICU on ventilator for a month. He died on August 15.

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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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Wegener's Granulomatosis - Symptoms Question: What were the symptoms of your Wegner's granulomatosis?
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