Monday, October 5, 2015

IVIG | Getting Started

    As many know I have suffered from Dermatomyositis for the past 5, almost 6 years now. You can read more about my story in my post 'A Little Twist on the Ice Bucket Challenge'.
    During my last trip to The Mysotis Center at Johns Hopkins in Baltimore my doctor decided that we were not seeing the results she wanted on my Imuran. Due to the stress of the house and infertility I've been getting flares more often and, while I haven't relapsed completely, I have not been making any sort of improvement at all. She decided that it was time to bring out the big guns, so to speak, and get going with IVIG (intravenous immunoglobulin). IVIG is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand donors. IVIG's effects last between 2 weeks and 3 months. According to Dr. Christopher-Stein, it's a 'miracle treatment'. She is optimistic that it could even take care of my rash completely! When she told me the news it was all I could do to fight off the tears. I had resorted myself to the reality of being somewhat disfigured (to a point) for the rest of my life. The thought of having normal looking skin and hands for the first time in 5 years was more than I could ever ask. Right now I'm just on the phone a lot with insurance and doctors and IVIG companies. Trying to get everything right so we can start. It's a process, though. The IVIG company is out of network so insurance doesn't cover as much as if it was in network, and right now we aren't really in a position to pay for the treatment. I've been requesting pre-certification, though, and am hoping that they will agree to charging an in network rate.
    On another front I finally found a Myositis support group! They meet every three months near Chicago. Their next meeting is October 24. I'm very excited for it!
    Hopefully I'll have an update soon, but until then....

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