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Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions

Posted by Tab4025 @tab4025, Jul 10, 2017

Hi, I was diagnosed with CIPD as a complication from an unspecified autoimmune disorder. my Neurologist started me on gamma garb IVig last September. Was really working. Then, I started having hives and then angiodema after the 6th month of treatment. I had 3 Angiodema attacks but it was not until the third one that actually caused my voice box to swell and my whole face and hands swelled, that they determined it was the IVIG. They did not happen until sometime after my treatment. I was Ok during. And the first two did not occur until after after my last treatment for the month. The third one occurred Two hours after the first treatment of the month. I was on gammagard, this was the only treatment to work for my CIDP. They are cautiously going to try a different brand, flebogamma. Has anyone experienced this? Should I try this other one? thank you in advance for any information you can provide.

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hjw473 | @hjw473 | Apr 17, 2025
In reply to @graziellaz "My husband was given 5 IVIG treatments and although he had no reactions from them after..." + (show)
Profile picture for graziellaz @graziellaz

My husband was given 5 IVIG treatments and although he had no reactions from them after the fifth treatment, he couldn’t walk ended up in Acute Rehab. Then we find out his diagnosis is wrong, he does not have CIDP! Needless to say, I have a little faith in that Neurologist and looking for a new one.

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I'm going to see what mine says at my appointment next week and decide what to do, it's all so frustrating.

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busylady10 | @busylady10 | Jul 4 6:12pm
In reply to @lcknifer "Hello, I have CPID along with a myriad of other things. Six years ago, I started..." + (show)
Profile picture for lcknifer @lcknifer

Hello,
I have CPID along with a myriad of other things. Six years ago, I started on Octagam. It made me very sick for about 3 days after treatment. I then switched to Gammagard, which worked well for me. Then insurance quit covering that and put me on Panzyga. This has been great. Hang in there! They will get you straight.

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@lcknifer after reacting to 2 other IVIG meds I have been on Octagam. After a year or so I quit having the 2 or 3 side effect days. 8 days ago my dose was raised 25% and on day 8 I’m still unable to do much but lay around and pray I feel better tomorrow. Has any one experienced this with Octagam?

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busylady10 | @busylady10 | Jul 4 6:45pm
In reply to @applepi3 "Dr. first tried IVIG, but hepatitis inflamed liver. Then plasmapheresis about 10 years ago; there was..." + (show)
Profile picture for applepi3 @applepi3

Dr. first tried IVIG, but hepatitis inflamed liver. Then plasmapheresis about 10 years ago;
there was a slight improvement after that 1st treatment, but not after that. Medical team kept me on plasmapheresis for 6-7 years with no improvement.

When first neurologist retired, I'm still searching for a replacement. these2 years +. I'm hopeful that there is a neurologist with an effective treatment.

Actually, with supplements chosen for my symptoms, I'm stronger and more active without any medical interference. ..including plasmapheresis which only depleted my energy for 3 days!

Yes, I endure weak limbs, tremors & fatigue, but I also can do basic house keeping, as long as husband does grocery shopping. I do use rollator & cane.

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@applepi3 I was told IVIG would probably not improve my CIDP but would keep it from getting worse. It has until recently and she upped the dose. Will have to see how it works.

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suetex | @suetex | Jul 5 12:08pm

I have been taking IvIg for at least 2 yrs and have had no side effects.

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ronvt | @ronvt | Jul 6 9:30am
In reply to @suetex "I have been taking IvIg for at least 2 yrs and have had no side effects." + (show)
Profile picture for suetex @suetex

I have been taking IvIg for at least 2 yrs and have had no side effects.

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@suetex So have I. I have heard that certain formulations can cause reactions, but I haven't had any problems other than minor ones (hoarseness, gut sensitivity to rich/spicy foods in the 2-3 days following infusions.

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ronvt | @ronvt | Jul 6 9:32am
In reply to @busylady10 "@applepi3 I was told IVIG would probably not improve my CIDP but would keep it from..." + (show)
Profile picture for busylady10 @busylady10

@applepi3 I was told IVIG would probably not improve my CIDP but would keep it from getting worse. It has until recently and she upped the dose. Will have to see how it works.

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@busylady10 It's not a silver bullet, unfortunately, but I have found it helps with some of the symptoms of my sensory ganglionopathy (closely related to CDIP), mainly brain fog and fatigue, which are big quality of life factors.

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itsmeagain | @itsmeagain | 1 day ago

@itsmeagain
I’ve been taking Privigen ivigs for 3 years with no side effects. It has not cured me but I’m not getting worse.

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