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Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions

Neuropathy | Last Active: May 9 10:07am | Replies (38)
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@romans8

I was very interested to hear from you all re your IVIG infusions. 2 years ago, I also was tentatively diagnosed with CIPD and put on the IVIG. I went through 6 months with infusions every 3 weeks, each over a 3-day period. Unfortunately my nerves tests showed no improvement, so the infusions were stopped. Strangely, I did also develop a severe rash during treatments, even tho I was given benedryl and steroids in the iv, but I attributed it to the Gabapentin I was taking. After I stopped the IVIG and switched to Horizant, the rash disappeared. Anyway, I just thought I would share my experience. Wish I could offer a better report.

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Replies to "I was very interested to hear from you all re your IVIG infusions. 2 years ago,..."
anoyymous123 | @anoyymous123 | Oct 25, 2023

Similar situation. Top NY Neurologist after many tests said you have CIPD. Prescribed IVIG.
Took infusions for 5 straight days. No pain relief but got terrible rash all over body. Dermatologist prescribed Dupixent twice a month and rash gone, Con side told have to take
dupixent forever. No more IVIG for me not worth the terrible painful rash Guess I will live with CIPD.

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church5x | @church5x | May 8 11:28am

I have been doing IVIG for just a couple of sessions so far. I have had 4 (first dose was a double dose over 2 days, then 2 more followed every three weeks). Although I do not feel 100%, I am able to walk, go up and down stairs, and my hands are working better. I do get headaches following treatments that last several days. I drink A TON of water to try to avoid this. I guess the IVIG dehydrates you. I feel fortunate that I have responded to treatment. At one point, to leave the house, I was in a wheelchair. But I do not feel like myself. It's life changing. My nerves feel like they are shooting all around, just strange. Since it's so rare, I have not found much support out there. I am attending a workshop this afternoon via "Shining through CIDP".

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