Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: little fighter, 45-54 Female (Patient) Published: April 30

I started getting very blocked nose all the time and very hard to clear, feet would be sore when I got up in the mornings. Came back home after doing au-pair work, nose blocked then bleeding, went to ent thought I had polyps went to have them removed and ent noticed lining of my nose looked odd, done blood tests etc, when home got stiff and found it very hard to get out of bed, had to swing myself around to get out, and in pain. Was called back for a checkup and told I had to be admitted, there was something wrong and they did not know what. This was all in 1984 and I was only 18. Was admitted and after loads of tests discovered I had Wegeners Granulomatomis. Has done loads of damage to me first 5 years were bad, then treatment was good and I had some good years, then got a collapsed lung, still collapsed to this day. lost the cartilage in my nose, saddle nose, and only last year April 2011 had to have my right eye removed, one big hole now at the back of my nose that caused problems with my eye to turn in had severe pain from that eye and headaches at the beginning of this illness were just something else. Dreadful. That was before I knew what was wrong that I was getting these headaches. It has not got to my Kidneys yet and I hope it doesn't, but I have survived for the last 28 years with this. So that is pretty good going to say when i was diagnosed it was not that well known about at all. One of the lucky ones I guess. Or unlucky I think, because of all the damage it has done to me over the years.

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Comment from: little fighter, 45-54 Female (Patient) Published: April 30

I started getting very blocked nose all the time and very hard to clear, feet would be sore when I got up in the mornings. came back home after doing au-pair work, nose blocked then bleeding, went to ent thought I had polyps went to have them removed and ent noticed lining of my nose looked odd, done blood tests etc, when home got stiff and found it very hard to get out of bed, had to swing myself around to get out, and in pain. Was called back for a checkup and told I had to be admitted, there was something wrong and they did not know what. This was all in 1984 and I was only 18. Was admitted and after loads of tests discovered I had Wegeners Granulomatomis. Has done loads of damage to me first 5 years were bad, then treatment was good and I had some good years, then got a collapsed lung, still collapsed to this day. lost the cartilage in my nose, saddle nose, and only last year April 2011 had to have my right eye removed, one big hole now at the back of my nose that caused problems with my eye to turn in had severe pain from that eye. And headaches at the beginning of this illness were just something else. Dreadful that was before I knew what was wrong that I was getting these headaches. It has not got to my Kidneys yet and I hope it doesn't, but I have survived for the last 28 years with this. So that is pretty good going to say when I was diagnosed it was not that well known about at all. One of the lucky ones I guess, or unlucky I think, because of all the damage it has done to me over the years.

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

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