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Anyone had success with IVIG infusions for idiopathic neuropathy ?
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Please , did you have a chance to talk to your friend ?
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Can you please get me your external email and I will introduce the two of you.
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What do you mean by external email ?
Hi @azza1 – I tagged our moderator to have them remove your email address to protect your privacy and prevent spammers from gatthering your email address in a public post. You can share email addresses and other personal information in a private message to another member. Get Started on Connect (link at the bottom of every page in left footer column) has step by step instructions.
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Thanks John for the information to how send my email in a private message.
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.
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
The manufacturer of Hizentra lists diarrhea as one of the possible side effects.
NIH has more information here – Immune Globulin Subcutaneous (Human), 20% Liquid
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?
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.
Hi @fomdelia, I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on IVIG infusions so that you can learn what others have said about this. Simply click VIEW & REPLY in your email notification to get to your post.
I also wanted to tag @azza1 @maryy and @arcticmark as they have experience with IVIG infusions.
Have you had other symptoms?
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.
I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.
@arcticmark, @albiet, Good morning. I am responding to post by @arcticmark about IVIG and Neuropathy. You can search yourself for more…..in the search field at the top of the page, you can enter (IVIG and Neuropathy). Let me know if you more. The other two on this page had one and two IVIG treatments. Neither reported finding any help with the SFN symptoms. Let us know what you find.
has anyone here actually tried ivig infusions. what were they like? how many did you take? did it help the sfn?
Hi! I have a rapidly progressing autoimmune mediated peripheral neuropathy and have found IVIG totally eliminates about 20 to 40% of my symptoms. Unfortunately it hasn't stopped the progression of my neuropathy but it has slowed it down somewhat. A member of my PN support group has short fiber idiopathic neuropathy and went from being disabled to being able to work full time with IVIG. A small study at MGH found 74% of people with short fiber neuropathy had positive results from using IVIG. It works if there is an autoimmune or inflammatory component of your disease. I'm not familiar with SFN but if you can get IVIG approved it is worth a chance. I had results with my first infusions although they say with some conditions it takes a while before you know if it works.
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