Hi everyone!

I can't believe I haven't thought to reach out to a support group sooner. I was diagnosed with Wegeners at 11 years old after a very close near death experience and kidney failure. On an absolute positive I have not had active disease other than some nasal complications in 8 years. Although, I am sure we all know the difficulties that arise after diagnosis (dealing with prednisone, cyclophosphamide and a laughable immune system).

I function quite normally but the nasal crusting has just recently become unbearable, i've been told it's not a good idea to operate in case it sparks a whole body reaction and brings me out of remission. Does anyone else deal with unbelievable crusting, bleeding and blockages? Has any sort of spray or cream helped the symptoms?

Just recently I was told I have to go for a cystoscopy to check for cyclophosphamide induced bladder cancer, I didn't know this was a thing until this week so just an FYI for others that have been on the drug, it might be something to look into.

Overall, after 12 years, I am quite exhausted to say the least, but holding strong and am here for any moral support or advice to newbies!