MPA or something else?

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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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  • Posted

    Dear Isabella

    You are certainly going thru it at the moment - you have my sympathies. Vasculitis is a horrible disease - I was diagnosed 20 years ago and there have been many dark days - but, more good ones. Best advice I can give us to make sure you find the best Rheumatologist you can find and one that has experience with Vasculitis. Where are you based?

    Best wishes

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    • Posted

      I live in Minnesota. I see a peds nephrologist and rheumatologist (Dr. Hobday) at the University of Minnesota Childrens. I have an endocrinologist and orthopedist at a nearer clinic, as when as optomologist for my cataracts. Most importantly I go to the Mayo Clinic for Dr Ulrich Specks, who basically discovered MPA.
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  • Posted

    Isabella firstly dont give up, you have a family and they love you. I have vasculitis for right eye, but I dont have any systematic body symptoms. Except for the eosonophil count. Even Im not sure where I have caught this disease. I had immunosuppresive drugs for 1.5 years and now  its stopped, but analysis is going on to find why eosonophill count is high.

    Your food has to be very nutritious, plus main main thing you need to be happy, stress spoils everything.

    I will advice you to do Yoga, specially Pranayama which will help you completely.

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  • Posted

    My heart goes out to you Isabellam. Don't give up. Try to do something to not stress and worry so much, because that's not good. Stress will only make it worse and it's also a trigger. No, you are not crazy. There are others going through the same thing. Talk to your doctor about medications to help you sleep and get rest. Also, you really  need to talk to your doctor about treatment for depression and anxiety. Meanwhile, try to take control of what you can; eating nutritional meals and doing something to help you relax.

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