MichelleH
12-17-2013, 12:55 PM
Hi
I live in Brisbane Australia and was diagnosed with Wegener's in October 2010 after a prolonged bout of sinusitis. My ENT specialist ordered a biopsy, WG was diagnosed and I was off to an Immunologist to manage my treatment.
It was all really frightening for me and my husband. When I went searching for a support group here in Australian- "Wally" was the lone 'president of the group as he explained that it had all but folded.
I had little luck in controlling the disease with methotrexate and prednislone so in July 2012 I had 2 treatments with rituximab. After initially having a bad reaction to it, my disease settled down and although I still felt tired , it was the first time in years that I felt well.:smile1:
The positive effects are starting to wear off and it is another 6 months until another round of rituximab. (In Australia it normal only to give rituximab therapy once every 2 years). I have been told to brace myself for the onset of symptoms which they hope to manage with steroids. I have also been told to see a psychologist to help me come to grips with the likely future of cycles of good and bad health I will experience from now on. I have started seeing the psychologist ( the jury is still out whether this is helpful) so I decided that it wouldn't hurt being able to talk to others with the disease.
So here I am- I hope to pop in now and again especially when spirits are low and I need a:hug1:
cheers
Michelle
I live in Brisbane Australia and was diagnosed with Wegener's in October 2010 after a prolonged bout of sinusitis. My ENT specialist ordered a biopsy, WG was diagnosed and I was off to an Immunologist to manage my treatment.
It was all really frightening for me and my husband. When I went searching for a support group here in Australian- "Wally" was the lone 'president of the group as he explained that it had all but folded.
I had little luck in controlling the disease with methotrexate and prednislone so in July 2012 I had 2 treatments with rituximab. After initially having a bad reaction to it, my disease settled down and although I still felt tired , it was the first time in years that I felt well.:smile1:
The positive effects are starting to wear off and it is another 6 months until another round of rituximab. (In Australia it normal only to give rituximab therapy once every 2 years). I have been told to brace myself for the onset of symptoms which they hope to manage with steroids. I have also been told to see a psychologist to help me come to grips with the likely future of cycles of good and bad health I will experience from now on. I have started seeing the psychologist ( the jury is still out whether this is helpful) so I decided that it wouldn't hurt being able to talk to others with the disease.
So here I am- I hope to pop in now and again especially when spirits are low and I need a:hug1:
cheers
Michelle