Patient Comments: Wegener's Granulomatosis - Symptoms

What were the symptoms of your Wegner's granulomatosis?

Comment from: Leon, 55-64 Male (Patient) Published: November 19

My first experience with Wegner's granulomatosis came 4 years ago. Came home from work and felt like the onset of flu, terrible headache, coughing, no energy at all. After a week, went to ear, eyes, nose, throat doctor. After visits and several painful biopsies he sent me to Wake Forest Hospital and they pulled all test together and came up with Wegner's. After more test they put me on prednisone, and a host of other drugs. Finally, it seems to be in remission, but it flares up from time to time. Joint pains and sinus headaches mostly. Skin rash at times and coughing.

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Comment from: Daisybelle, 65-74 Female (Patient) Published: November 09

I was diagnosed with kidney problems with blood and protein in the urine in large amounts. Was almost in kidney failure, but function has now improved to a reasonable level. After a renal biopsy it was confirmed that I have vasculitis. Now on steroids and chemo tablets and have noticed an improvement in kidney function, but now have difficulty and pain on swallowing.

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Comment from: Alan, 55-64 Male (Patient) Published: July 12

I was finally diagnosed with Wegner's granulomatosis in 200. A kidney biopsy confirmed the condition. You need to see a Consultant Nephrologist (Renal Department). My condition is relatively under control with the occasional 'flare-up,' but is usually brought back under control within a few weeks. I am on a long list of medication, taken daily which controls the condition, however still get occasional pain, spasms, etc., which you learn to live with. I feel I am in very good hands and truly appreciative of the treatment and care I receive.

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Comment from: gayle, 75 or over Female (Caregiver) Published: January 20

My 80 year old father was sick for a month with what he thought was the flu. He finally went to the doctor who did blood work, but he suffered from a stroke before he was diagnosed. It is believed that the vasculitis closed one of the arteries to his brain. He was treated with cytoxan and prednisone, and was making great progress with the rehab from the stroke he died suddenly from arterial dissection.

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Comment from: surviver, 55-64 Female (Patient) Published: July 08

Unusual sneezing all the time. Very tired for no reason. Then a tiny lump came up on the right upper part of my nose. My glands in my throat were swollen for now reason. The worse part was terrific head aches. Its worse than migraine. All I wanted to do was sleep. I wasn't very hungry, considering I like my food. Doctors began treating me for hay fever. I knew it was more than that. Finally after 3 months of suffering with head aches I was admitted to a hospital, where within a couple days diagnosed me with Wegner's grandulamatosis.

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Comment from: V V, 55-64 Female (Patient) Published: May 27

Joint swelling with sometimes severe pain along with a general feeling of not being well. Bloodshot eyes, ear pain then extreme fatigue till I was pretty much in bed. This all happened over a period of about 7 weeks. As soon as I was referred to a rheumatologist she sent me to several other specialists and did lots of blood and urine testing and diagnosed me in a week or so.

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Comment from: Tokith, 45-54 Male (Caregiver) Published: April 20

Hubby suffered weight loss, chest pain, breathlessness and a rash on legs. Diagnosed lung cancer and lobotomy was biopsied to diagnose Wegner's.

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Comment from: Marge, 55-64 Female (Patient) Published: April 12

With Wegner's granulonatosis, I had very, very severe joint pain that moved from joint to joint in a matter of days. Also great fatigue and plain not feeling well. I also had sinus problems. Finally I developed small dark red blister like bumps on my hands, feet and legs. I will say that the joint pain was around a couple of years and just got worse and worse until I could barely walk or function, but with NO swelling. I was taking 3-4 Ibuprofen every 5-6 hours just to go to work. Actually I was relieved when diagnosed, I thought I was going crazy!

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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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