Granulomatosis with Polyangiitis

Question:

What treatment did you receive for Wegener's Granulomatosis? Submit Your Comment

Comment from: Taty, 55-64 Female (Patient) Published: July 09

I was diagnosed with Wegener's granulomatosis (WG) 1 year ago. I’ve lost smell and taste 4 months ago. I started injecting chemotherapy 3 months ago, however, my WG disease is in a chronic state. My specialist recommended chemo infusion, but my company is so high I haven’t been able to get. Meanwhile my blood work shows all RBC very low and she claims it’s imperative I get chemo. I’m disabled since 2009. I’ve had sixteen surgeries and now WG, can it get any worse!

Comment from: Dusti, 25-34 Female (Patient) Published: February 14

I was told in 2016 I had Wegener’s granulomatosis. I ended up having masses in my lungs and one doctor told me it was sarcoidosis. Then my lung doctor said it was Wegener’s. I have had 3 infusions of rituximab. I also have other medical issues. My infusions made me feel sick for 24 hours each time. I don’t wish this disease on anyone. My main problem is pain.

Comment from: Lizzie, 55-64 Female (Patient) Published: January 07

For Wegener's granulomatosis I was treated with Rituxan infusions every 6 months and 2 years with prednisone.

Comment from: Jhubb, 55-64 Male (Patient) Published: June 14

I received and still receive infusions of Rituxan every six months. I have suffered multiple fingertip damage and amputation when first diagnosis of Wegener's granulomatosis showed up. This is one nasty disease.

Comment from: Mattieus, 25-34 Male (Patient) Published: May 30

Wegener's granulomatosis gave me joint pain, severe sinusitis, pneumonia leading to respiratory failure and renal failure. I was placed on ECMO (extracorporeal membrane oxygenation) as a last ditch effort to save me in the ICU. I was kept in a medically induced coma for a month. I underwent plasmapheresis and four rounds of 4 unit Rituxan. Six months out, symptoms are now controlled using methotrexate and 2 unit doses of Rituxan every 6 months.

Comment from: Jules, 65-74 Female (Patient) Published: October 07

Wegener’s granulomatosis affected my sinuses, my lungs and my kidneys. I got an IVIG infusion and then 4 separate infusions of Rituxan. I am now on an immunosuppressant of 2000 mg per day and having many tests done on my arteries, my lungs, and scheduled to see an allergist. I am so tired of all the doctor appointments and the monthly blood tests. But I guess it is better than dying.

Comment from: Trickydicky, 55-64 Male (Patient) Published: October 20

I have recently been treated with large doses of antibiotics due to an infection in a wound from a back operation. I have not felt better in years! I was diagnosed in 1989 with Wegener's granulomatosis. The antibiotics were initially oral flucloxacillin, then intravenous antibiotics and finally oral Co-amoxiclav.

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