I was previously diagnosed with Wegener’s granulomatosis, now known as granulomatosis with polyangiitis. This is a form of vasculitis, a chronic disease that is characterized by inflammation of blood vessels.
In 2007, my rheumatologist initially placed me on a low dose of oral methotrexate. In 2012, a different rheumatologist had prescribed weekly injections of the maximum dose possible of methotrexate.
During 2013-2014, I was suffering from severe nasal crusting, as well as intermittent nose bleeds. My ENT at the time suspected that I had developed what was previously referred to as limited Wegener’s. This terminology reflected that I didn’t display any evidence of lung and/or kidney involvement as part of my vasculitis.
My subglottic stenosis was initially considered to be the primary manifestation of my vasculitis. It’s currently considered to be idiopathic in etiology.
In 2014 and 2015, I received a total of ten infusions of Rituximab. In 2014, I was prescribed Cellcept, in order to address my overly active immune system.
Methotrexate, Rituximab, and Cellcept all came with horrific side effects. This isn’t surprising, given that they are considered forms of chemotherapy. Not enough people realize that you don’t have to have cancer in order to receive chemotherapy as a treatment.
Given that none of these harsh treatments helped to prolong the interval between my throat dilatation surgeries, I decided to stop taking them. During this same time period, I also stopped taking high doses of Prednisone.
Last week, Dr. Lorenz at the Cleveland Clinic stated that he thought that my Wegener’s had “burned itself out” over time. This was most encouraging news to receive from such a highly acclaimed surgeon.