Introduction

[ChrisV]

Hello all, I'm new here! My name is Chris and I live in Salt Lake City, Utah.

Short wegner's bio:

I've had a long relationship with polyangiitis-with-whatever-this-disease-is-called, but I wasn't diagnosed until Dec of 09. I went into the ER on Christmas day in 2009 thinking I probably had swine flu or pneumonia, but nothing they were doing helped at all. I was getting worse every hour. After a few days I was pretty sure I wasn't going to make it out of there. Luckily after about 5 days sliding downhill, a Rheumy walked into my room and said, "I treat weird diseases that are hard to diagnose."

"You're going to love me." I responded.

He took me off of the IV antibiotics, replaced it with 1000mg of Solumedrol, and I've been a weggie ever since. I was 30 at the time.

I have been trying to force remission ever since with mixed success. I've been on 2 rounds of Rituxan, lots of Predisone (less the many here, thank goodness), Cellcept (briefly, slept the whole time), Immuran, Immuran/Allopurinol cocktail, and Methotrexate. Right now I'm riding a wave of Rituxan and my goal is to get off of the meds all together (don't tell my doctors). Also a really fun (leaky) lung biopsy and sinus surgery in there. Exciting 3 years!

I have had involvement in eyes, skin, lungs, kidneys and sinuses. Sinuses are by far most affected, and the only current area affected. I have a perforation in my septum about the size of dime.

I think the thing that drew me here to the board was when I realized that an end to this isn't a few months around the corner. I think I just barely accepted that fact. I always kind of expected that I would be able to force remission, and then go back to a normal life, but healthier without any of the Wegener's symptoms. I thought I was there about 10 months after being diagnosed, but quickly had some brutal times in the nose. Now I'm doing much better but my doc is very clear that he doesn't see a future without major meds for me. I HATE the medicine! Granted it keeps me above ground, but I'm more interested in thriving than surviving.

So I found all you guys to share who the best doctors are, what are the best books to read, and what treatments work for this rare disease that no one really understands.

Right now I'm really into the idea of trying to treat the disease with a healthy diet, exercise, meditation, and mindfulness, so I'm going to explore that and if anyone is interested I'll share results along the way.

2013 is going to be the year I kicked this disease in the trash.

Thanks for reading, looking forward to getting to know the community.