Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Washington Al, 55-64 Male (Caregiver) Published: March 20

Extreme headaches like none other and a month of ear aches, then blood red eyes, sinus stuffiness and stiff joints. It wasn't until a neurologist noticed the rash on my husband's ankles that she suggested it might not be a brain tumor. Diagnosed with Wagener's, went on Prednisone (60 mg) and IV Chemo for 1 year. Now on Mycophenolate (500mg) and Presnisone (5mg). Creatine levels holding at 1.4-1.6. Still extreme ear problems, 'barrel effect' where you can hear your own voice when you speak, it stinks.

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Comment from: PA girl, 45-54 Female (Patient) Published: March 20

I was 24 years old when finally diagnosed. It started with what my ophthalmologist thought was conjunctivitis and ballooned from there. Achy joints, cartilage loss in my nose...I was treated with Imuran and Steroids for 5 years and remised for two years then my kidneys went dialysis and then transplant. I was tired achy grumpy and didn't feel well for years. Now 12 years post-transplant with the help of the antirejection drug Cellcept my symptoms have all but gone. The key is finding a good rheumatologist who is familiar with and deals with WG patients.

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Comment from: 19-24 Female (Caregiver) Published: February 22

My daughter is 21 years old and in 2007 she was diagnosed with Wegner's. The disease took out her kidneys and we were lucky enough to have got a donor from her older brother. She is always tired, always seems to have a cold, in and out of the hospital. She seems, to me, to be under a lot of stress from people around her and I'm wondering if this stress can be a major factor in her always getting sick to the point of hospitalization. Today she went in for a checkup and they hospitalized her because of her creatinine levels and rbc and wbc and bun levels were critical. I am so worried for my daughter. She takes her medicine, tries to work out, college, works part-time, boyfriend and just seems to be extremely tired and unhealthy. I don't know what to expect or what to do except be here.

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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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