My story so far... I felt crappy from at least early spring 2009, it came on slow thankfully. Fatigue, systemic joint pain that moved around, skin issues. I got a physical in the summer of 2009 and saw my primary doctor a few times. In the fall of 2009 things got worse. My primary doc took basic blood tests and referred me to a Rhumey (lucky for me Dr. Dwight Robinson at Mass General Boston). I got an appointment for late December with Doc Robinson. During December everything went down hill, skin having obvious problems, joint pain problematic. I saw Doc Robinson the end of December 2009 and he took a bunch of labs and put me on low dose 10 mg prednisone. Over the next week my calves seized up. Tuesday Jan 5th 2010 I could not get out of my chair at work due to calf muscle issues. That day I went to Mass General ER. For most of the day they could not figure out what was going wrong. Near the end of the day, CK level blood test came back over 2000 (supposed to be 250). It's a marker of severe muscle inflation/breakdown. Admitted to hospital immediately based on CK level. Took another week of biopsies, cat scans, MRIs, blood tests, x-rays, and many specialists to diagnose what I had. I was called the “interesting case”, felt like I was on the show “House”. The kicker was when my c-ANCA came back high. After running further tests issues were found in my kidneys and liver. Upper respiratory was fine (this threw them off initially). Lucky for me, after 3 large injections of steroids and then prednisone daily starting at 60 mg, my kidney function returned to normal, my skin cleared up and my joint and calf pain has dissipated. To fix my overactive autoimmune, they've put me on a new bio drug called Rituximab (takes the place of Cytoxan). I get another injection of Rituximab on Jan 26. I realize that compared to most with WG cases I dodged a major bullet due to the slow onset and early detection of WG in my case. My main Rhumey is going to be John Stone at MGH, who seems to be expert in the disease. Very scary, but very hopeful.
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