Hi Everyone:

Well I have not posted since September or so. For those that remember, I have had Wegeners for 41 years and have had a kidney transplant for 25, I had another one for 10 years before that. I was treated for a relapse this summer (two doses of Rituxan and high dose steroids). My relapse presented as bleedy nose issues, elevated SED rate and PR3 and constant sinus and ear infections, similar to what happened when I first got sick. Those symptoms had been going on for about 3 years. An ENT at Hopkins confirmed that I had "active disease" in my nose, so I was started on Rituxan and high dose steroids in August.

I didn't post much here because I just never got better. I know everyone said it took a couple of months but I just was not seeing good results. I began to feel like I was a "non-responder". I got a bad sinus infection in November and was treated with Levaquin for 25 days! During that time I developed horrible pain in the right side of my face at night. It would migrate around, like a brain freeze up my right nasal passage and across my forehead and down into my jaw. The holidays were tough. An MRI at Hopkins showed inflammation consistent with Wegeners/GPA so my ENT/Rheum put me on a short course of high dose steroids. Nothing helped the pain.

Finally last Friday, I wound up in the ER with the pain, another MRI and a nasal biopsy that showed a Squamous Cell Carcinoma tumor in my septum. Feel a bit like I am living a dream, wishing one of the 4-5 ENTs that I had seen in the last 3 years would have biopsied it. I am also trying not to look back too much but rather look forward positively. Quite frankly I am soooo relieved to know what is wrong with me. The way I look at it, I have taken immunosuppressants for the past 41 years with warning labels that say "may cause cancer". In a way, I have dodged this bullet for 41 years.

My message to everyone, is if you have been on immunosuppression for a long time and end up with weird sinus symptoms, insist on a biopsy.

I know I will be ok. Like all of us, I am a fighter. The plan is surgery in the next week or so and then radiation. Hoping for a really cool looking nose if they have to do have to do reconstruction. Thanks for thinking of me. I will keep you posted.

Much love,