Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
Thank you Arctic for quick reply . I am waiting to hear from your friend on my email because i need more information from her. The EMG test for me is normal but it was done from 3 years ago .
Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
John, Volunteer Mentor | @johnbishop | May 18, 2019
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.
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.
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.
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?
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.
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 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.
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.
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Thank you Arctic for quick reply . I am waiting to hear from your friend on my email because i need more information from her. The EMG test for me is normal but it was done from 3 years ago .
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1 ReactionHi @arcticmark
How are you ?
Please , did you have a chance to talk to your friend ?
I wish you have a good news . Thank you
Hi,
Can you please get me your external email and I will introduce the two of you.
Have a great weekend!
Hi ,
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.
How to Send a Private Message
-- https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
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3 ReactionsThanks John for the information to how send my email in a private message.
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1 ReactionHello @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?
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.
-
Like -
Helpful -
Hug
2 ReactionsI 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.
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?
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