I had suffered with sinus problems for a long time, then a painful lump on my nose appeared and gradually got worse, so in March of 2012 I visited the GP. I was given antibiotics, but these were not effective so I was referred to ENT at the local hospital.
By September 2012, the lump had developed into a hole at the side of my nose. After a biopsy I was finally diagnosed with Wegeners Granulomatosis (GPA) in October 2012. An ANCA blood test earlier in the summer had been negative. A CT scan done at this time showed sinus blockage and damage to the bone.
Following diagnosis, I was referred to Addenbrookes Hospital in Cambridge where I was promptly given cyclophosphamide infusions and high dose steroids. This was followed by maintenance therapy of azathioprine, which adversely affected my liver so I was then given rituximab, gradually reducing the prednisolone to 5mg a day, by September 2013.
I was given dressings to place across the hole in my nose so I could wear glasses. I was very self conscious about the dressings and if the hole was showing. In July of 2013 I went to see a plastic surgeon and prosthesis technicians. A mould was made for a prosthesis and it was fitted August 2013. I was pleased with the results and the outcome was much better than I had anticipated. The new prosthesis certainly made me feel happier about facing the public.
Both the consultant and I have now agreed that it's best I do not have any re-constructive surgery on my nose, for the time being at least, as the prosthesis has been so effective and as I was told that the result would not look cosmetically any better than the prosthesis. It would have involved several operations, and the inconvenience of being without my glasses for several weeks was also something I did not welcome! I may have thought differently if I'd been younger!
A second prosthesis was made in July 2014, but it made my nose sore. This was partly due to a small lump on the side of the bridge, which was then removed in Aug 2014. However, I still found the original prosthesis more comfortable, and the colour was better! I'm still using this one now, but as they are supposed to last for about three years, I may be due for a new one this year.
I've now had two years on Rituximab and I am not sure at present, if and when I will need more. I've also been steroid free since the end of Feb 2014, apart from a short course to treat gout.