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Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions
Neuropathy | Last Active: May 9 10:07am | Replies (38)Comment receiving replies
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.
Replies to "Similar situation. Top NY Neurologist after many tests said you have CIPD. Prescribed IVIG. Took infusions..."
I also had a rash. Neurologist panicked and sent me to a dermatologist. Turns out I just needed premeds of prednisone and benadryl. That was 20 years ago. I am now getting IVIG infusions every Monday with no side effects. I've had CIDP since 1996. Numb hands and feet but few other symptoms. Without the constant infusions, I would be dead by now.
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I also did 7-8 mos of IVIG infusions every 3 weeks for 2 days per week.
That had been my second series of infusions,as I had them about a year or so before without any difference in my symptoms.
This was on recommendation from a new neurologist who thought I should give it another try.
I couldn’t see wasting the time and cost on something that wasn’t working, and that was killing my veins in my arms.
I just glad I didn’t go thru having a port inserted, because it would’ve been for nothing since we discontinued the IVIG.