Wegeners veteran (at 22 y/0)

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!

Welcome to the “club”! Hope everything gets on a favorable trend for you.

As for your nasal crusting, you can use a neti-pot to rinse your sinuses and flush out the crusts. Also, some folks (who will probably chime in later) use a water pic with an attachment that allows for greater control of the volume, pressure, and direction of the rinse solution. (You can also search this forum for “water pic”.)

I had a cystoscopy a few years ago when I had blood in my urine (resulted from a UTI). The anticipation of the procedure was much worse than the actual event. I was on cyclophosphamide for about 16 months to get the disease under control, so I share your concern about bladder cancer. Assuming the cystoscopy is negative, you should either get some dip stick urinalysis test strips at your pharmacy or have your doctor order periodic urinalyses for you. I get a urinalysis done bi-monthly along with my blood work.

Hope all goes well for you!!

Welcome to the forum. I am sorry that you had to suffer from WG at such a young age. It is very kind of you to offer help while you struggle yourself. God bless you.

In my humble opinion (Please others, correct me if I am wrong) so much crusting and especially nose bleedings are an indication for WG activity. It might not be a flare but smoldering should be treated. Please consult with WG expert.

Also, are you on ctx all those years ? Or on other meds ? Why dont they give you rituximab (mabthera) ? It will not risk your blader.

I had about 5 years of nose crustings and bleedings, and it stopped only after 2 rounds of rituximab.

Welcome! I am also fairly new to the forum & never thought to look for a support group! I have been a member for almost a year but have had WG for half my life. I find that reading people’s stories & their advice very helpful. The people you will find here are awesome!
I do agree with Alyssa, you maybe flaring with excessive crusting & nose bleeds. Please let us know how you are doing!
Natty


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