Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: 400LDF, 13-18 Male (Caregiver) Published: April 01

My 16 year-old son was recently diagnosed with Wegener"s granulomatosis through a month long stay in the ICU. Lung biopsy was positive along with the ANCA and CRP and elevated ERS of 118. He recently finished a weekly routine of Rituxan infusions. He is on 40 mg of prednisone daily, Bactrim and Norco for pain. We are being referred to a pediatric pain clinic as his pain has been a big issue. His disease is in the sinuses, lungs with bleeding and nodules and questionable kidney involvement. We go to this week to see if the kidneys are now in play. Some days he can barely walk or use his hands.

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Comment from: Karen, 55-64 Male (Caregiver) Published: March 19

My husband who died of Wegener"s granulomatosis back in 2012 also had 5 years prior to his diagnosis, what is called scleritis, is an inflammation in the white portion of the eye. After doing extensive research on scleritis, it is said that approximately 1/2 of cases of scleritis are associated with underlying diseases that affect the body internally, or could also manifest themselves into underlying diseases. I can"t help but wonder if Wegener"s can be caused by scleritis, since the medical professionals claim there is no known cause. I hope this might help someone out there, even though it didn"t help us.

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Comment from: wegners patient, 55-64 Female (Patient) Published: November 22

I was diagnosed with Wegner's granulomatosis in March, 2013. It started with ear infection leading to joint pain. I am doing chemotherapy and steroids at present and feeling good. Early diagnosis is the key, it is not a good disease to deal with but chin up, take day by day and stay positive.

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Comment from: Winnlnjohn, 45-54 Female (Patient) Published: August 13

Ten years ago, I began to have seizures. I was misdiagnosed with epilepsy, but the seizures continued. I saw a doctor and he claimed that there was a tumor type blockage in the septum causing the seizures. He removed the entre septum. My nose subsequently collapsed and had to be rebuilt. Ten surgeries later, my face still is collapsing and only now did I find out that this is in fact Wegner's granulomatosis and that all of the surgeries were not necessary as they treated the outside of the head and not the inside. My mistake was that I went to a surgeon who just started cutting, instead of seeking a true diagnosis for the problem. The bottom line is that I have lost precious time because I should have been receiving treatment, and now I may die because the disease is so advanced.

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Comment from: struggling every day, 45-54 Male (Patient) Published: May 09

In 2010, I was hospitalized for apparent strokes and seizures due to brain vasculitis. I tested positive for MS, but I've also tested positive for Wegner's grannulitis (a 300 count in my blood workout and spinal puncture). My doctors said not to worry about the elevated levels. I decided to play Dr. Google with the results, only to find out about this illness. So my Neurologists don't know anything about treatments, my primary either. They both said just to ignore it. I suffer regularly with headaches, sore joints, hearing and vision issues difficulty breathing in my chest and through my nose (bloody sometimes), dark urine and bowels, abdominal cramps. They all said that it's very rare for me to have it, 1 of 30,000, so chances are in my favor it's just something else, but that still doesn't rule out the ANCA elevated levels. My disability advocate (because of my strokes) saw that I have the symptoms, and by chance, has another client with Wegner's. She said that it does go into remission, that the stroke seizure medicines and MS steroids may have cause that for now, I may be lucky. Now I need to find a treatment, I guess next is to a rheumatoid doctor.

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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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