Theresa Bohrer

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  • Theresa Bohrer
    July 21, 2017 at 4:42 pm

    The first protocol they tried on me was a high dose of Prednisone for six weeks in 2013, and it seems that’s what they do with most CIDP patients. On the one hand, it makes sense because Prednisone is utterly inexpensive. However, I think it’s counterproductive. I haven’t met one yet that Prednisone works for. It nearly destroyed me, and I still don’t feel I’ve ever quite bounced back from it. The IVIG did help me to improve, but I’ve never gotten to the level of health I enjoyed BEFORE they put me on Prednisone. I hope the sub-q will be approved by the FDA for use with CIDP patients soon, though I don’t know whether to expect that to happen in weeks, months, or years.

    I had an acute attack this time last year and my legs were mostly paralyzed. I spent the better part of May and June in two hospitalizations (five treatments of plasmapheresis did nothing to help me) and a week in a skilled nursing facility, and I was only 55 at the time.

    I’ll have you — and all CIDP patients — in my prayers for effective treatment and recovery of abilities. I hope you can leave the nursing home soon and get back to your life.

    Theresa Bohrer
    July 21, 2017 at 1:28 pm

    Thank you so much for the update. I hope and pray to have FDA approval for using Hizentra for CIDP patients soon! This gives me hope for a much better future.

    Theresa Bohrer
    July 19, 2017 at 11:56 am

    Thank you, Jim! I’ve posted my remaining questions there.

    Theresa Bohrer
    July 19, 2017 at 11:55 am

    My neurologist recently prescribed weekly subcutaneous IG (“sub-q IG”) infusions in place of IVIG. My insurance company denied the request because Hyzentra is not FDA approved for use in treating CIDP.

    Both are the same drug; human immunoglobulin.

    IG has been demonstrably effective in keeping the advance of paralysis from my CIDP at bay.

    Neither I nor my neurologist believe there is any reason to think a subcutaneous delivery of IG to a CIDP patient would be any less effective than IV infusions of the same drug.

    I think sub-q IG treatments for CIDP have the potential to dramatically improve the lives of patients, as well as the potential to reduce costs for the insurance companies. I want to give it a try. I need the following questions answered in order to further appeal my insurance company’s denial.

    ARE THERE ANY STUDIES BEING CONDUCTED OF SUBCUTANEOUS IG AS A TREATMENT FOR CIDP?

    ARE THERE ANY BRANDS OF SUBCUTANEOUS IG THAT HAVE BEEN APPROVED BY THE FDA FOR USE IN TREATING CIDP?