Hi There everyone,
Thank you for this wonderful resource. I have already found some very useful information here.
I was diagnosed in May of last year after three separate sinus surgeries. Finally my ENT guy did a biopsy. I was initially very excited to have a diagnosis after two and half years of chronic sinus infections etc. But now it is nearly a year later and I am not feeling any better. I am on 25mg of Methotrexate and have dropped down to 9mg of Prednisone after a high of 60mg. I have struggled with the prednisone, particularly mood issues. A close relation had a psychotic episode after taking prednisone so it is something I have been very aware of. I still have face pain and have developed a cough. I have several hot flushes day and night. My Immunologist says that I the methotrexate is the best drug for me at the moment as my Wegeners is localised, but I strongly believe it is not inducing a remission. I have had a lung x-ray since last seeing her, and a Sinus CT scan so I am hoping something shows up that backs up my feeling. I have an appointment tomorrow.
My ENT has referred me on to a Respiratory doctor because of the cough. My lung function test were normal as was my Lung CT. I feel like I have had most every diagnostic test going. I do not feel very good about that. I live in New Zealand which has a total population of about 4 million, so it is hard to gauge how much experience anyone here has with this illness. I feel frustrated and a little depressed that this is the "new normal" some of you talk about. I am sixty years old this year and had been looking forward to an active retirement with my husband. Now my energy levels are so low I cant imagine doing anything active