Wegener's Granulomatosis

Wegener’s Granulomatosis Discussion

Wegener’s Granulomatosis (aka Wegener’s Disease) is a rare disease, a form of vasculitis (inflammation of the blood vessels) and an auto-immune disease (the body’s immune system attacks its own body tissues). In 2011 the name changed to Granulomatosis with Polyangiitis (or GPA).

Treatment can be just as traumatic as the disease itself. There are many treatment options and your doctor will explore the best one for you. The vast majority of us take prednisone (prednisolone) at the very least. An immunosuppressant medication is often used as well such as; Cyclophosphamide (Endoxan, Cytoxan, Neosar, Procytox, Revimmune), Methotrexate, Fosamax, Actonel, Mycophenolate Mofetil (Cellcept), Imuran (Azathioprine), Arava, Etoposide, Leukeran or Rituximab (the only medication approved by the FDA for treating WG).

Patients often end up taking antibiotics all the time to prevent infections since the above medications suppress immune systems. The most common one is Bactrim (Septrin). Some other protectors used are Bactroban Nasal Ointment, Ad-Cal D3 and Alendronic Acid (Fosamax).

People familiar with Wegener’s Granulomatosis call the disease by a variety of names including: WG, Wegs, Weggies, Wegener’s* or simply vasculitis.

* It is also worth noting that pronunciation changes around the world, in the US and Canada it is Weg-ners in the UK and Germany it is Veg-ners.

In 2011 it was agreed by doctors that the name of the disease will change to Granulomatosis with Polyangiitis.

More on Wegener’s:

• If you need help, support, advice or just a sympathetic ear join hundreds of other patients and caregivers at the WG Discussion Group on Yahoo! Groups.
• Patient’s guide to everything Wegener’s from Bruce’s ultimate autoimmune and WG index
• The Vasculitis Foundation is the only international organization for patients with Vasculitis.
• Voice4Vasculitis is a UK based support group for vasculitis patients their families and carers.
• WegenersNet is a community where people affected by Wegeners Granulomatosis can interact with each other for support and learn more about this disease.
• The Lauren Currie Twilight Foundation is a UK based charity committed to funding research, improving treatment and raising awareness of Vasculitis.
• ANCA Associated Vasculitis Foundation is dedicated to finding a cure for related forms of ANCA Associated Vasculitis within the next 10 years through an aggressively funded research agenda.
• WG Discussion for support and general discussion of Wegener’s Granulomatosis. For the care partners, family, friends and patients.

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