Due to the nature of my neuropathy and damage at the dorsal root, I do not think the IVIG has helped in reducing the overall nerve pain. Sorry to say.

However, since being at the higher dose of IVIG for neuropathy treatment, I can see that my autonomic dysfunction has not gotten any worse and even seems to have stabilized in some ways. I also haven't had a fall in almost 5 months, so I think my proprioception may be improving.

The allodynia hypersensation type pain on my legs has definitely improved and that is a SFN symptom...one you my have with your SFN.

Some people get a pretty immediate response to certain symptoms with IVIG. For others it can take a while before noticeable fiber density is increased and pain/burning relief achieved. I think you will know in the first 1-3 infusions whether it will help you.

I would say it is ABSOLUTELY worth a try.

I honestly don't know if you would have to be on it for the rest of your life. In my case, yes, but you are dealing with a different situation, different Dx, and different pain.

Dear liftyourhands,
IVIg, also gave me aseptic meningitis 2x. The first time right after the first dose was administered, I was scheduled two have two doses. The 2nd time, they used a different brand, scheduled 5 doses in 5 days, giving 20%, each day. On the 3rd day again I got aseptic meningitis.

I now take hizentra, I infuse at home. It is given subcontinuasly, into the fat of my body. I have MMN, multyfocal motor neuropathy. I was diacnosed when I was 66 years old, I'm 70 now. MMN, also is an autoimmune disorder.

Sincerely,
Maria

I used IVIG in various doses and intervals for nearly 4 years. I never had any major side effects or complications. In the beginning I got a headache after the infusions. I thought it was from infusing too fast, but after a few infusions I discovered it was actually from the benedryl they were premedicating me with. Once I stopped the benedryl I had no side effects at all.
My main concern with the neuropathy is weakness. I did not leave the infusion room immediately stronger like I was told some do. The main reason I was on the IVIG is because it was believed that an abnormal antibody in my immune system was causing the PN .
Just remember the IVIG itself does not "heal" the nerves. It might help with what is causing the PN,, so that the nerves can then begin to heal. ( which we know is a sloooow process ) the IVIG did give me an energy burst for the first few weeks after my infusion, which was always nice
good luck in your decision---everybody's experience with it is different. I would not hesitate to go back on IVIG if my neuropathy began to progress.

Do you need a low IGG for it to work?

I'm not sure I understand your question. The low IgG is a primary immunodeficiency disease...a completely different medical condition from the neuropathy. I just happen to have both conditions and receive the IVIG for both. It replaces the IgG my body is unable to make on it's.

The dosing of IVIG for neuropathy is completely different and usually about 3 times more then required for an immune deficiency.

So basically, if I understand your question, NO, the low IgG has nothing to do with the neuropathy and therefore not required to have a low IgG for it to work. The IVIG helps the low IgG (of an immune deficiency) by bringing the level up. The IVIG for neuropathy works as an immune modulator to help organize better immune function in autoimmune types of neuropathy. But the actual mechanics of how the IVIG helps neuropathy isn't completely understood yet...they just know it helps.

Hope this helps.

Ok gotcha. I just assumed IVIG was just a big dose of IGG but apparently it has other modulating mechanisms. I have normal levels of IGG but it wouldn't hurt try it I guess. Maybe I will take some colostrum in the meantime haha

IVIG is a big dose of IgG. Yet, when introducing it to the immune system with autoimmune activity it's seems to help modulate it and help it to function better. They really don't know why it works so well. This actually isn't uncommon for a medicine to work and they not know why. The use of Neurontin and other anti-seizure meds for neuropathic pain began as an accident of sorts. They just noticed that seizure patients receiving it start to have less pain. So they start using it for PN. They now know more about how it works but they didn't at the start.

If I ever get IVIG i sure hope it works. No other options really. And I got scared of prednisone after seeing a bunch of youtube vids about it. No thank you! My first neuro prescribed me 60mg daily! After doing my research I tossed the prescription out.

My IGG and IGM were both very high, and I was on IVIG. The IVIG was used to modulate the immune system in my case.