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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
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.
Replies to "I have started subcutaneous IVIG, Hizentra, about 3 months ago. I had been diagnosed as having..."
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.
I have but I had to use Lomotil as well. I was diagnosed with CVID 30 years ago while I was in college. I got very sick and have had a heart infection as well as sepsis and other infections. I have been on IVIG until 6 years ago I started Hizentra subcutaneous. I am on 92 Grams which is a very high dose.
I take such a big dose for Neurological problems I have since I was in a coma for a month. I was also diagnosed with Sjögren’s Disease recently.
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Hello @fomdelia, Welcome to Connect. There is another active discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you meet other members discussing IVIG infusions.
> Groups > Neuropathy > IVIG Infusions
-- https://connect.mayoclinic.org/discussion/ivig-infusions/
The manufacturer of Hizentra lists diarrhea as one of the possible side effects.
-- https://www.hizentra.com/benefits
NIH has more information here - Immune Globulin Subcutaneous (Human), 20% Liquid
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2935641/
Hopefully other members with similar symptoms will be able to share their experience with you. Has your doctor discussed any other treatments to help with the chronic diarrhea?