Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: lucky, 35-44 Female (Patient) Published: October 22

I have had Wegner's granulomatosis for 11 years. My initial symptoms were really bad. I had sinus problems, a really bad ear infection, joint pains, night sweats, and fever. The doctor said it was infection and gave me amoxicillin. I ended up in Accident and Emergency and they said I had TB (tuberculosis). After three weeks treatment my symptoms got worse. My brother told the consultant we are not happy and want to move and he decided to do one more test, Wegner's. I was straight away put on IV prednisone and cyclophosphamide for 6 months. I lost all my hair and loads of weight but got better. Year later I had a relapse and was back on chemotherapy tablets. I was on azathioprine for 9 years and my consultant stopped them. Six months later in March 2013 Wegener flare tablets were not working. I Had 2 doses of Cytoxan, 10mg prednisone and antibiotics. I am feeling better but I have sinus problems now. It is not a nice illness to have. I am also on kidney dialysis but can't have transplant due my veins not being good. I still got to live life to the max. I have good days and bad days.

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Comment from: Karen, 55-64 Female (Patient) Published: October 15

I was diagnosed with Wegner's granulomatosis (WG) in 2007. It began with sores in my mouth, ear pain that doctors could find no reason for, nose bleeds, fatigue, weight gain and generally not feeling well. WG attacked my kidneys and I was on dialysis for a while. With treatment I was able to stop dialysis. My kidneys function at about 30% and will never get better. I am still on 5mg of prednisone and will be on it for life. The first year was bad and I was hospitalized for 2 weeks every month. Once I got past the hump in treatment I did very well. I have not been hospitalized even once in the last 5 1/2 years. I still occasionally have nose bleeds, but I can live with that.

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Comment from: LittleJohn, 55-64 Male (Patient) Published: October 08

It began with chronic sinusitis while deployed to Southeast Asia in 1991 and I continue to have this problem even today. This is despite numerous antibiotics over the years. In 2001 it appeared to have spread to my lungs and I was diagnosed with asthma. Although taking various drugs through the years it has only grown harder to breath and no lung capacity to walk or exercise and lots of coughing. I'm currently taking Pulmicort, theophylline, Singulair, and Proventil. In 2007 my pulmonologist had the huge masses that came from my nose, lab tested for bacteria among other things. It did not contain anything that alarmed him. Around this same time, he prescribed Bactrim for 7 days each month as I was running sporadic low grade fever for which there was no diagnosis. I have continued on this regimen even now as fever returns upon stopping the Bactrim. In 2008 my pulmonologist prescribed very low dose prednisone (1mg/day). Around this time I was also diagnosed with sleep apnea by sleep study, and use CPAP. In 2012 I was referred to an ENT by my general physician. After removing a large mucus mass he performed a biopsy as he suspected Wegener's, but it was not definitive. He prescribed a nasal wash solution of three antibiotics. I continued this regimen 3 times a week and he states the 'hamburger' look of my sinus has improved somewhat. Shortly after the ENT visits began, he referred me to a rheumatologist. In 2013 my rheumatologist diagnosed inflammatory arthritis, by biopsy. He increased the prednisone to 5 mg/day and introduced methotrexate and has continued to increase dosage so that now I'm on 12.5 mg 2 times per week and 8 mg/day methylprednisolone. In 2014, I was referred to a dermatologist who diagnosed me with Sweet's Syndrome, by biopsy. Recently my ENT diagnosed me with Cogan's disease. My rheumatologist and ENT suspect Wegener's granulomatosis but no definitive diagnosis has been made. My rheumatologist is planning to use rituximab in the near future.

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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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