Hi everybody,

After a month of worsening symptoms and battling uphill with doctors that something is seriously wrong, that I don't "just have a cold and sinus infection" I ended up in the ER 3 days ago due to shortness of breath and worsening chest pain. I demanded an x-ray which confirmed 4 masses in my lungs: two large, two nodules. The PA I met with in the ER thought it was pleurisy, but diagnosed me with pulmonary nodules and referred me to a wonderful pulmonologist who only had to speak with me for 30 minutes before he told me that I have a textbook case of GPA.

I'm really blessed to have met this doctor. He's moving this along very quickly and isn't wasting any time, and has used a lot of his influence to get me everything I need ASAP. I don't want to know where I'd be without him right now.

He wants to spare me from having to do a lung biopsy so he's referred me to an ENT in 2 days for a sinus biopsy to confirm. I also had more blood work done yesterday. Until then he's asked me to not take prednisone because he doesn't want it to mask the symptoms, so I'm on pain killers right now and going through hell. A new sharp pain appeared on my left kidney last night which kept waking me up in agony, but there's no blood so I'm grateful.

The gravity didn't really sink in until last afternoon, I was just relieved it wasn't cancer but now I'm not too sure how I feel about that. I don't really want to tell anybody about what's going on except my closest family, because I don't really expect anybody to understand (I still barely understand).

This is the 2nd instance I've had of this kind of flare-up. The first one happened last year and I suffered for 5 months with it. Everybody thought it was a sinus infection and I actually ended up having a septoplasty and turbinectomy because of it. The only relief I'd have were the few small days I would get prednisone. I used to have to call on-call doctors and beg for my life to get a script for it but I only got 3 5-day rounds during those 5 months.

Somehow after the surgery it went into remission but then it came back a month ago.

I know this is different for everybody, I'm just wondering if there's anybody out there who also gets this excruciating nose pain and how you cope with it. The pain radiates from my teeth up through my nose onto my scalp. The inside of my nose is very bloody, swollen, and scabbed.

When I was treating this like a "sinus infection" I actually began doing saline rinses with medical grade manuka honey. After two days the manuka honey actually caused the bleeding to stop and scabs to temporarily heal. Of course this isn't a cure and it all came back as soon as I stopped rinsing. I plan on talking to my ENT about this though before I try it again. I'm guessing it's going to be a "if it works it works" kind of thing though.

Thanks for being a community.