Patient Comments: Wegener's Granulomatosis - Experience

Question:

Please share your experience with Wegener's granulomatosis. Submit Your Comment

Comment from: TS, 0-2 (Caregiver) Published: September 19

They say Wegener's granulomatosis is so rare and that there is no documented history/case studies of 2 members of the same family having this disease. Boy, were they wrong! My mother had it and was misdiagnosed several times. After begging doctors to test for Wegener's, kidney biopsy confirmed she had it. She died 2 days after she was diagnosed. Her sister also had it and died the following year. My mom and aunt's grandmother also had it and passed away from it! And now I have been ill and fear.

Comment from: Thankful, 55-64 Male (Patient) Published: August 22

I came down with Wegener's granulomatosis in 2012. Kidneys total failure; and lungs 90 percent full of blood. I was put in drug induced coma and treated with prednisone and Cytoxan to knock out immune system (drank 2 gallons water/day to clear Cytoxan). I was in ICU for 10 days, released in wheelchair after 45 days. I was on dialysis, then off and had therapy. Ran in a year. I transitioned to Cellcept (1000 mg/d), Bactrim (1/2 tablet/d), gabapentin, and simvastatin (10 mg/d). Today there are some effects on memory, processing speed, and multitasking, but I am in remission, no relapse. Thankfully sharing hope.

Comment from: PeeWee Longway , 25-34 Male (Caregiver) Published: July 11

My 26 year old son has severe swelling of his optic nerves and now has edema in the right eye and has not found the right doctor to treat him. He had a brain bleed on the left side because of so much pressure, they gave him some medicine that has not taken the swelling down in 4 weeks. We're still waiting on a treatment plan. He was diagnosed in 2015 with vasculitis w/Wegener's GPA ((granulomatosis with polyangiitis)) in his sinuses and kidneys.

Comment from: mariong, 45-54 Male (Caregiver) Published: June 15

Sixteen years ago my husband was diagnosed with Wegener's granulomatosis. He was not diagnosed for several weeks and the delay meant that in the meantime his kidneys must have been failing. Actually his symptoms were classic and all 3 of the specialists should have spotted it. The sinus bleeding, the fatigue, shifting muscle pains, the pain in the little finger joint which is classic autoimmune symptom, and loss of appetite. After 7 weeks in hospital and 100 units of blood, and being on dialysis, what saved him was the drugs starting to work and then he had an operation to remove the ulcerated and bleeding section of small intestine. His kidneys repaired and now he is fine. It came out of the blue and it has not reappeared. He is on low dose methotrexate to keep the autoimmune system dampened down and rarely gets sick now. He had a great attitude to his illness and we were always positive and involved in decisions. It helped us and the medical staff.

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