Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: surviver, 55-64 Female (Patient) Published: February 22

For me, I noticed that I was starting to feel more tired than usual. I then noticed a tiny lump at the bridge of my nose. Within a few weeks, my glands on both sides of my throat came up, making me think that I had an infection. However, on visiting the doctors, nothing was found to be infected. I even went to the dentist thinking it might be my teeth, or gum infection. Then came the head ache. Oh my gosh. They were so unbearable. For me I think it was worse than migraine. I could face the light. I went off food. My doctor at the time gave me antibiotics. What for I wasn't too sure. After 3 weeks of being in pain, I was admitted into hospital, where I was diagnosed with this horrible disease. That's how it affected me.

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Comment from: Millie, 45-54 Female (Patient) Published: August 09

I started to have multiple episodes of deep vein thrombosis since 22 years ago (2nd pregnancy) and pulmonary embolism. I was placed an IV filter in my vena cava. On December 2011, I underwent a removal of blood clot surgery which after the anesthesia, I couldn't brief on my own and I was intubated, right after this intubation, I started to have multiple episodes of pneumonia, fluid in my lungs, asthma, COPD, multiple hospitalizations due to lung problems. Recently, I started to have kidney problems which I was diagnosed with Wegner's granulomatosis. I have been on prednisone therapy since 2005 due to urticaria. Please help me to understand this disease and what do I need to do to feel better.

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Comment from: 45-54 Female (Patient) Published: July 09

I had flu like symptoms, which then turned into me thinking I had M.S. My legs and feet ached so bad that I couldn't get out of bed to walk. MY nose would bleed like never before. Family doc gave me meds. 4 trips to E.R. and 1 trip to ENT Doc. About 2 months of this, finally family doc sent me to a rheumatoid doctor who put me in the hospital and diagnosed me with Wegeners. I am on Steroids, and cytoxin, My kidneys took a hit. They are getting better. My left hand and foot feel numb. I am on gabapentin for that. I have blood tests once a week...I also had bleeding in my lungs..I had the cleaning of my blood done which helped my kidneys get better..

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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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Wegener's Granulomatosis - Treatment Question: What was the treatment for Wegener's granulomatosis in you, a friend, or relative?

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