I do NOT get 2000mg/kg of IVIG. I have primary immune deficiency...along with my autoimmune disease (Sjogren's), so I get the 400-600 mg/kg like you. My neuropathy is beyond repair and the ganglia is permanently damaged so the higher dose won't help me. Mine is strictly for my immune deficiency.

I guess your doctor's plan was higher doses at the start (2-3 days in a row is typical for neuropathy--and would have been 'closer' to the appropriate dose), but your reaction kept them from proceeding. Did they do a spinal tap to confirm aseptic meningitis? Headaches (even severe) are common with IVIG, especially multiple days in a row, so it could have just been the IVIG.

It's all very strange...the dose, and even who's ordering it. I don't understand why the neuro can't get it approved. It's the only way you would get it approved. IVIG is NOT approved for use in autoimmune disease by itself (in the US), so the rheumy would have to tag the neuropathy for insurance to pay. They seemed to have left you out of the loop for much of the discussion and what you've been getting. Then they dropped the benadryl...that should always be included. It's an antihistamine and always used to help avert reactions...as IVIG can commonly cause immune mediated reactions where benadryl is helpful. Sure it knocks you on your butt. You can also try Zyrtec...same class, NO sedative effect.

Do you have typical SFN symptoms...like burning, tingling, etc? If so, does it help with this? What type of neuropathy do you have that causes muscle weakness? Do you have MG? IVIG IS approved for use with MG.

Steroids for hives??? That is scary. Why not try an antihistamine first. Do you know what is causing the hives?

I agree 100% that you should have a sit down with both doctors. Have a list of questions on hand so you're better informed about their plan, dosing, approach, and what OTHER options are available.

Sounds like you have several things going on and someone needs to fine tune the treatment for you. IVIG may, in fact, be appropriate for you...but are you getting the full benefit if you're not getting the right dose for neuropathy? I would ask this. And your steroids can be (attempted to be) reduced, at the very least to help all these other side-effects you've been having. But don't stop the steroids suddenly...and consider asking about a zyrtec so it won't make you tired/loopy.

You have your plate full. How are doing without the Cymbalta?