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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Hi @govisri,
I have had Ivig. It was stopped, I was worse. From my experience, it is not like a pain pill, almost immediate relief. The antibodies need to build up, where you think you need them. They are not pre-programmed so it takes a while for them to build up. Patience is the key unless you are doing the 3 days in a row every three weeks. I do not want to go through that. At about 6 months in I noticed a difference in how I felt. I have been on it for a year, and I feel so much better now, not quite there, but the improvement from last year is visible. (No longer looking like death warmed over.)

JFN

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@jrichardfla

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

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Thanks and yes, please share.
I have same as you for awhile now, and Privigen didn’t work for me either.

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So I am newly diagnosed with CIDP (Mid March). I am going through IVIG. I'm struggling a bit...Any words of wisdom or advise would be wonderful. I am responding to the treatment and I am able to walk unassisted which is huge. So I feel like I should just be glad about that, and i honestly am, however, this is life changing. I feel yucky after treatments, head aches for about a week. Nothing major, but a chronic headache. The tingling in my hands, especially at bedtime is driving me crazy. I feel like I just have nerves in my hands and legs shooting all the time. Does this get better or is this my new norm? I have tried to find support groups, but I guess because it's so rare, there aren't many. I did join "Shining through CIPD" and look at their website often. Does anyone have any advise?

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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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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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@govisri

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

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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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I refused plasmaphoresis, IVIG did nothing for me, Gabapentin and other meds did not help me either.
Went to a new neurologist who is recommending Rituxan infusions for my CIDP.
He feels when you’ve tried A B and C and they don’t work, you need to try D.
Meanwhile I’m trying to stop the progression of this disease.
Right now I seem to have weakness in my legs when walking, pain in my feet everyday, and numbness now in my right hand.
I use a cane and a rollator when walking,but I can’t walk very far in general.
I get tired easily, and am taking Tramadol for pain, along with pain patches when my feet hurt so badly.

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@church5x

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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I get fluids before and after my IVIG and they administer it slowly. That seems to help with side effects.

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@marquis113

I get fluids before and after my IVIG and they administer it slowly. That seems to help with side effects.

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So I do get a saline IV before and after. I don’t think I drank enough additional liquids for the first 2. This morning I woke up without a headache and felt good. It was the first time in several weeks.
How long have you been doing IVIG?

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