Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: wendy, 35-44 Female (Patient) Published: September 01

I am 44 years old and was diagnosed with Wegner's granulomatosis in August 2013 after the family doctor noticed nose caving in and crusting nose bleeds. So tests were run and sedimentation rate was 130 and C-reactive protein was in 40s but my ANCA was negative so I was sent to ENT for biopsies. He did tests which showed vasculitis and I was sent to rheumatologist and they said it was Wegener's granulomatosis. I was put on Cytoxan, Bactrim and prednisone. I also had severe anemia and very, very low iron, almost depleted by body of all iron, sleep apnea, etc. In May 2014 counts bottomed, so I had to go to hospital for fluids. I was feeling horrible so was off medications for a couple months then started methotrexate and prednisone thinking all was going good and remission, but late that year started having some breathing issues. In March I went to pulmonologist and he blew things off. I was wheezing every other breath and he said I had to lose weight and put me on another inhaler. I was upset as I couldn't do anything for no air. I just had a second opinion from another doctor who did some surgery and, oh my goodness, it feels so good to be able to breathe after months of not being able to. New ENT went down and took tissue, gave steroid shots and a balloon to help with swelling. I did great. I so hate this disease but still have negative ANCA and now just trying to deal with it and get things done.

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Comment from: Piper, 65-74 Male (Patient) Published: March 12

In November 2007 I was diagnosed with Wegener's granulomatosis. I had gone to the Veterans Affairs hospital for a routine checkup, but I was feeling fatigued, short of breath, feverish and it hurt to walk. My doctor checked my blood work and said something wasn't right and sent me to the infectious disease center. They ran more tests and immediately checked me in to the hospital. After running various tests for a week, they determined that it was Wegener's. I initially lost about 50 lb. over a course of three weeks. I was put on a heavy dose of Cytoxan and prednisone for six months and gradually weaned of it. It affected my lungs and kidneys (now working at 40 percent). In 2008 I had open heart surgery and they were afraid of Wegener's, and it did flare up a week after surgery. I haven't had a relapse in over 5 years. The only medicine I'm on for Wegener's is lisinopril to help maintain kidney function.

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Comment from: Dionne, 35-44 Female (Patient) Published: July 30

It all started in January 2014. I started feeling bad like a cold or a virus but within a few months my life was changing more than I would ever know. I think I went to the doctors 20 plus times, changed doctors and even went to the dentist. My Wegener's granulomatosis symptoms started off with fatigue, body aches, sweating and I do mean a lot of sweating! I didn't want to eat anything, then swelling in my face. It felt like someone hit me in the nose. Then my ears were infected and bright red and felt like a bee stung them. My mouth was next, I can't quite describe the pain I felt. I was miserable. I went to the emergency room (ER). At 3:30 am they gave me pain medications and sent me home. I slept for 30 hours but felt no better. Small lesions were throughout my mouth so I went to the dentist, maybe he would know something I didn't. He said go back to your doctor, I think you are having some kind of allergic reaction. So back to the doctor's but this time I went to a new doctor. He said I think you have some kind of invader hiding in your cells. What now! By this time I am coughing up blood so I am sent for a lung CT scan with dye, this proves to be my launching point. April 2014 I am sitting with my now lung specialist, being diagnosed with a disease that sounds like a joke. I have lesions in my lungs and it looks terrifying but wait, there's more; you need to now go to the hematologist (blood doctor). All my levels are bad and I need to start treatment as soon as possible or I could die. Everyone I knew said why don't you get a 2nd opinion, When you're this sick you don't really have time for a second opinion you just hope you have the right doctors. Off to the treatment I went, of course I fainted and then had a seizure, so that didn't go well but the show must go on. Two days later with Xanax (anti-anxiety) in my system I started treatment. It wasn't painful. I didn't lose my hair, in fact I have been fighting a mustache ever since. My kidneys have been affected so I have to take a blood pressure medication and I don't even have blood pressure problems! The nerve of this disease! I do feel better today and I am hopeful that things stay in this direction. I went from 60 mg of prednisone to 15 mg. The house is cleaner than it ever has been, that stuff can make you crazy so be mindful that it is temporary.

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Comment from: Darek, 55-64 Male (Patient) Published: July 07

I was diagnosed with Wegener's granulomatosis in the year 2000. It started in 1999. It started as sinusitis for which my doctor gave me antibiotics. Those antibiotics worked for 3 days and the symptoms returned. MY doctor gave me another antibiotic and it cleared up. Two months later infection went to my eye (conjunctivitis) and it lasted for 3 months. After several visits to my eye doctor and different medications it disappeared. During this time I lost weight and my joints ached, and I was lethargic. Then 3 weeks later I could not breathe and my doctor put me in the hospital. After one week and many blood tests they thought I had pericarditis. Two weeks later I was diagnosed with Wegener's. Unfortunately I lost my kidneys. I got a transplant in 2005 but unfortunately it lasted only seven years. I am back on dialysis and awaiting another transplant.

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