Patient Comments: Wegener's Granulomatosis - Treatment

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

Comment from: Normskeeper, 55-64 (Patient) Published: August 20

My symptoms now appear as typical to Wegener's: extreme night sweats, unable to walk due to unbearable joint pain, and constant pain behind the left eye. I made many trips to the ER, ENT, GP, cardiologist, rheumatologist, psychiatrist, and nephrologist, who finally looked at my readings and said I would not survive another eight hours. I had left work to make the consultation and ended up on Mother's Day with the diagnosis following a kidney biopsy. From the onset of problems to diagnosis, it was seven months, four biopsies, and 17 different and powerful medications. I joked about my "Hello Kitty" face due to the extraordinary amounts of prednisone, weathered the Cytoxan, and lost my hair in the process (not a bad thing). I spent five months off and on in the hospital with kidney failure and six years into this I am healthy, active, working, and enjoying every moment. I had cataract surgery two years ago following the ravages of prednisone, which was very successful. I am grateful there were finally answers, excellent doctors who supported and believed in me, and family and friends who carried me. I always believed I was "safe" and still do after two flares. I remain on Imuran to this day. I am a firm believer if you are given the diagnosis and tools available to fight, you are empowered to act. I am most fortunate and wish others health and strength once diagnosed.

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Comment from: survivor2013, 25-34 Female (Patient) Published: June 10

I was diagnosed in 2010 when mine started like a sinus infection and then i had kidney failure and was on dialysis for almost 3 months and then my kidneys started back. Thank God. I am still taking prednisone and Imuran. I have had 14 surgery's in the last 3 years and still have trouble with my bladder and have to have another surgery on my bladder.I am a survivor and a fighter and I will continue to do cause I have 2 kids to live for so it is going on 3 years now since I was diagnosed but I feel fine and I have good days and bad days but I believe in God and I have handed this wegners over to him.

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Comment from: pbyoung1, Female (Patient) Published: April 08

I was first diagnosed with Wegener's in 2001. I had fevers, weight loss, and coughed up blood. I was fortunate enough to get to a pulmonary doctor who had one other patient with the disease. I was treated with Cytoxain and prednisone, and went into remission after a year. It came back three years later, and was treated the same way for two years. I stopped taking medications in 2006. Now, though I feel fine and have no symptoms, I have an elevated ANCA result. This has been going on for almost a year. I feel great; have no symptoms – but a high ANCA. Is there anyone else out there with this problem?

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

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