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I was diagnosed with ANCA Positive MPA three years ago. I, like most of you I'm sure, have undergone azathioprine (which didn't improve my help), and Cellcept (which made me more ill), and Rituximab (which initially helped for the first few months and four rounds), and obviously prednisone, but the past six months have been the most painful of my life. I was in drug free remission in November, but relapse four weeks later in December. I was given prednisone for three months and Rituximab immediately. On July 12 I had a maintenance dose of Rituximab and doctors told me I'm still in remission, but that doesn't explain the pain. I'm 16 years old and haven't made it a week without vomiting for pain in months, I haven't had a day without tears in at least a year, I can't survive without icy hot, biofreeze, heating pads and ebsom salt, and even after all these products I still need help walking most days. The pain is so bad I can hardly function. I don't sleep at night because of pain. The pain is worse than the time pre-diagnosis when it took nine months before I was diagnosed and started treatment. Every joint in my body aches. My monthly labs aren't good but they are stable. I'm starting to think I have another disease or disorder going on additionally. Am I crazy thinking this and is this just daily life with vasculitis? Because I didn't sign up for this!
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