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Jul 19, 2019 · IVIG Infusions in Neuropathy

Thank you for your help but I don't feel that the other community, IV infusions, will address what I am seeking feedback on. The community for infusions discusses Hizentra as a for treatment for neuropathy. Hizentra was approved for that condition not long ago. I have read the posts so far on the infusion community site and there was no discussion about my condition, Common Variable Immunodeficiency, and their experience with treatment for this especially Hizentra. I am really seeking to hear from those individuals who have this immune condition, how they cope with it and what has been their treatment, if not Hizentra. My biggest issue to deal with is the diarrhea and CVI can mimic inflammatory bowel disease, but all doctors I have seen this year alone have confirmed that the diarrhea is from the CVI.

Jul 19, 2019 · IVIG Infusions in Neuropathy

Thank you so much for your help. Unfortunately there are no other options to treat the diarrhea that hasn't been tried. This symptom developed 22 years ago, well before Hizentra and I was missed diagnosed for the 22 years, until this year. There is no medication that hasn't been tried. I do yoga, meditation, acupuncture, breath work, been seen by multiple dieticians, naturopaths and even a healer. I am a registered nurse for 38 years and I can't even help myself. I was a patient at John Hopkins for a year, driving back and forth to Baltimore every 6 weeks but they didn't know about the CVI they thought it was GI and wanted me to take a biologic, Remicade, which I declined. I did take Humira for a period of time but naturally it didn't have an effect as my immune system needed to be built back up not shut off. I am truly grateful for communities such as this one and hopefully someone will have an experience to share that relates to my situation. Thank you again.

Jul 19, 2019 · IVIG Infusions in Neuropathy

I have started subcutaneous IVIG, Hizentra, about 3 months ago. I had been diagnosed as having Common Variable Immunodeficiency, CVI, 9 years ago but the immunologist didn't feel I needed any treatment. This year a different immunologist disagreed, glad she felt the way I did, and now I am on the Hizentra. I have had non-stop diarrhea because of the CVI for the last 22 years, it can mimic inflammatory bowel disease, but 2 of my doctors said this treatment could possibly stop the diarrhea or at least improve it. So, my question is: Has anyone with CVI had improvement in their chronic diarrhea with gamma globulin treatment AND how long before you saw any improvement. Thanks so much for your input.