Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions

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

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

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?

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".

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.

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.

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

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?