1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

raphyboi | @raphyboi | Oct 27, 2023
In reply to @anoyymous123 "Similar situation. Top NY Neurologist after many tests said you have CIPD. Prescribed IVIG. Took infusions..." + (show)
@anoyymous123

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.

Jump to this post

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.

REPLY
anoyymous123 | @anoyymous123 | Oct 27, 2023

Glad to hear that you are better. I have given up and will just live with supposed CIDP. In my case absolutely no relief after 5 day infusion cycle and got unbearable rash from head to toe. Will not do infusion again not worth the skin pain. Now on Dupixent forever.

REPLY
anoyymous123 | @anoyymous123 | Oct 27, 2023
In reply to @harley22 "I also did 7-8 mos of IVIG infusions every 3 weeks for 2 days per week...." + (show)
@harley22

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.

Jump to this post

I give up and will just live with suposedly CIDP. Only got a terrible rash from head to toe from IVIG Not worth going thru again. On Dupixent forever.

REPLY
lcknifer | @lcknifer | Oct 27, 2023

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.

REPLY
1 reply
harley22 | @harley22 | Oct 28, 2023
In reply to @lcknifer "Hello, I have CPID along with a myriad of other things. Six years ago, I started..." + (show)
@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.

Jump to this post

Can you tell me what those two drugs,Gammagard and Panzyga did for your symptoms.
I did previgin IVIG and it did nothing for me.
None of my Neuro docs mentioned those for my CIDP.

REPLY
1 reply
lcknifer | @lcknifer | Oct 29, 2023

First, I always feel weak and drained for about 5 days after my infusions (2 days x 6 hour each), as my body accepts the meds. Then, I feel better and stronger with more mental clarity. Now, I still have my NMD, but the symptoms aren't quite as bad. I also have COPD and high intracranial pressure, but I don't have the headaches and soreness as bad. I hope this helps.

REPLY
cheentsia | @cheentsia | Mar 18 9:51pm
In reply to @govisri "Please let me know if anybody has gone through PLASMAPHERESIS for polyneuropathy." + (show)
@govisri

Please let me know if anybody has gone through PLASMAPHERESIS for polyneuropathy.

Jump to this post

I did 3 rounds of plasmapheresis while in the hospital & rehab last summer & fall. The first round was 5 sessions every other day. I improved, but after about a week regressed to not being able to walk or use my hands. The second round was 6 sessions every other day & the results were the same. I improved, was sent home, but then a week later was admitted back to the hospital, not being able to move at all. The third round was 6 sessions every other day, but this time I was also given steroids. I improved enough to go back to rehab & eventually home. In addition to the steroids, I continued plasmapheresis every other week.

I'd initially been diagnosed with Guillain Barre, but after 8 weeks & all my ups & downs, the diagnosis was changed to CIDP. I sought a second opinion at Mayo last November & they confirmed this diagnosis. My Mayo neurologists also encouraged me to try IVIG again, despite it not working previously as they explained I'd been given the dosage for Guillain Barre. I abandoned plasmapheresis to try IVIG again which I have been doing weekly along with steroids for the last 14 weeks, I don't feel that the IVIG improved my symptoms & I had unpleasant side effects. I regret not continuing with plasmapheresis as it was working along with the steroids & I did not have side effects. I meet with my Mayo neurologist in a few days to discuss a treatment plan going forward.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 19 7:38am
In reply to @cheentsia "I did 3 rounds of plasmapheresis while in the hospital & rehab last summer & fall...." + (show)
@cheentsia

I did 3 rounds of plasmapheresis while in the hospital & rehab last summer & fall. The first round was 5 sessions every other day. I improved, but after about a week regressed to not being able to walk or use my hands. The second round was 6 sessions every other day & the results were the same. I improved, was sent home, but then a week later was admitted back to the hospital, not being able to move at all. The third round was 6 sessions every other day, but this time I was also given steroids. I improved enough to go back to rehab & eventually home. In addition to the steroids, I continued plasmapheresis every other week.

I'd initially been diagnosed with Guillain Barre, but after 8 weeks & all my ups & downs, the diagnosis was changed to CIDP. I sought a second opinion at Mayo last November & they confirmed this diagnosis. My Mayo neurologists also encouraged me to try IVIG again, despite it not working previously as they explained I'd been given the dosage for Guillain Barre. I abandoned plasmapheresis to try IVIG again which I have been doing weekly along with steroids for the last 14 weeks, I don't feel that the IVIG improved my symptoms & I had unpleasant side effects. I regret not continuing with plasmapheresis as it was working along with the steroids & I did not have side effects. I meet with my Mayo neurologist in a few days to discuss a treatment plan going forward.

Jump to this post

Hello @cheentsia, I would like to add my welcome along with @govisri and others. It sounds like getting a second opinion was helpful to confirm the CIDP diagnosis. Can you provide an update on your new treatment plan after your upcoming Mayo neurologist appointment?

REPLY
pamelaz | @pamelaz | Mar 19 8:46am

We’re your treatments for neuropathy? I’m not sure what CIDP is. I’m in constant pain and can hardly walk. Any suggestions would be appreciated.

REPLY
jrichardfla | @jrichardfla | Mar 20 10:38am
In reply to @harley22 "Can you tell me what those two drugs,Gammagard and Panzyga did for your symptoms. I did..." + (show)
@harley22

Can you tell me what those two drugs,Gammagard and Panzyga did for your symptoms.
I did previgin IVIG and it did nothing for me.
None of my Neuro docs mentioned those for my CIDP.

Jump to this post

I just suspended PRIVEGEN. I was (am) getting worse. I’ve been on that on and off for a couple years and things are starting to get worse so what’s the speed of the program and we started retesting from the bottom up. Lots of blood work in process right now, nerve conduction test show damage. We’ll see how the bloodwork affect what’s going on soon he’ll be back to the doctor this week and if I get any news I’ll share it

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.