Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Debbie, 45-54 Female (Caregiver) Published: June 12

In December of 2008 my husband came down with what the medical profession believed to be a sinus infection. Couple of days off work and rest lead to his not being able to walk 5 feet without struggling to breathe. Back to the doctor, this time pnemonia or so they thought. Condition continued to worsen leading to kidney failure. It was February 2009 when he was diagnosed with Wergner's, but not in time to save his kidneys. He started dialysis in May 2009. He under went 6 months of IV cytoxin treatments and was placed on steroids and immunosuppressent medications. March 1, 2010 they removed a granuloma from his left lung, having to take a piece of the lung to get it. All seemed to be going well until February of this year, 2013. He was hospitalized again with an elevated ANCA and started over on cytoxin treatments with the addition of IV rutuxin. Then in May of this year he was diagnosed with Calciphylaxis. He is currently not able to take any of the immunosuppressent medications due to open wounds on his legs and the high risk of infection. He has a wound vac on both legs and is getting the IV drug sodium thiosulfate 3 times a week. We are doing dialysis 5 times a week now and just living day by day. Wergner's they tell me is rare. Then he has colonitis (which is currently controlled) and they tell us this is rare also. Now the calciphylaxis which is even more rare in that only 1% of dialysis patients ever get this. I just wonder what if anything made him so susceptible to so many rare conditions. Anyway, my advice if you get a sinus infection that doesn't go away and you feel worse and worse keep going to doctors until you get answer and begin to feel better. I wouldn't want anyone to suffer as my husband has over the past 4 or so years.

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Comment from: Doc1Psych, 55-64 Male (Patient) Published: May 02

Being a doctor myself, I was quite surprised eight years ago when I developed three bouts of pneumonia within one month's time and the skin on my forearms, legs, and face had hundreds of purple "dots" on it while I was recovering. I started having epistaxis (spontaneous bloody nose) almost daily. Blood also came from my sinuses as well when I sneezed or blew my nose. Since I studied this disease only briefly in medical school I just knew it was Wegener's because of the peculiar collection of symptoms that I presented with. Labs confirmed it. However, I want to stress that there is life during Wegener's. Rheumatologists are getting on top of this disease because it is being seen and diagnosed more often than ever before. I'm alive and in remission eight years after diagnosis, so hang in there. Help is on its way.

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Comment from: Barbara, 55-64 Female (Patient) Published: April 03

I was had a skin biopsy in 2009 which confirmed vasculitis. I went to a doctor, who studied my illness with many tests to confirm I was had a skin biopsy in 2009 which confirmed vasculitis. I've been on prednisone and Azathioprine for 2 ½ years. I lost 35 pounds in two months, was always sleeping, and had night sweats. Also, I had a cranberry-colored rash from my toes to my waist, and every blood vessel came up to form an unbelievable rash under the skin. I am now in remission, off the meds, and praying I will stay in remission. I'm thankful for my doctors, who I feel saved my life. Now, I see my doctor every month for blood work. So far – great!

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Comment from: PJM, Female (Patient) Published: April 03

I was tested for second time for Wegener's. I strongly suspect I do have it. I pray I get an answer even if it's not good, because my body is falling apart. I have a hole in my septum and my nose is collapsing. Three doctors thought I was abused, because my nose has a deformity I didn't have two months ago.

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Comment from: Proud/concerned Dad, 25-34 Male (Caregiver) Published: March 14

My son was diagnosed with Wegener granulomatosis (WG) / granulomatosis with polyangiitis (GPA) in April 2009 at age 24, just after graduating from college and starting his first job as an electrical engineer. He's very active and fit, but had flu-like symptoms for about two weeks, then terrible stomach pain that required hospitalization. A kidney biopsy confirmed WG/GPA. After lots of medications and weeks of slow recovery, he's now doing pretty well, all things considered (no relapse yet). His kidneys only function at about 30%, but he hasn't needed dialysis. We don't know how long his kidneys will hold out. I'm very proud of him for how he's dealt with the disease and rebuilt his life, but as a father, I'm also very concerned for his future and what WG/GPA will mean for whatever time he has left. He's happy now and I want him to remain that way, so I do everything I can to stay informed on new treatment strategies.

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Comment from: cincygirl, 55-64 Male (Caregiver) Published: November 19

My heart breaks for you all as I read through your stories. My father passed away in 2002, at 56, from Wegner's granulomatosis - which led to Leukemia after a bone marrow transplant. He had sinus problems as far back as I remember which he always blamed on a broken nose not set properly when he was a child. But around 1987/88 he was diagnosed with WG. He spent the next 12-14 years on/off steroids, Cytoxan, too many drugs to name. For the most part he was lucky that he didn't suffer through kidney failure or lung collapses. He remained very active although he would get winded easily. He did experience nose bleeds a lot - at times lasting 5-8 hrs it seemed. Then also his windpipe had swollen making it hard to breathe, especially with phlegm/colds. Several times he had to be rushed to the ER because he was choking on phlegm. Very scary. In the fall of 2001 he stopped producing bone marrow and had a successful transfer. Unfortunately while trying to get better he got the flu, and with his immune system so low, leukemia took over. Within 48 hours it was in 97 percent of his body. It was only a few days. Diagnosis and the right doctor is KEY!

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