I'm at my wits end too and although it has prob been discussed before, i would also be keen to know whether anyone has been treated for small fibre neuropathy with ivig and whether it helped their SFN and in what way?

MrsD is correct...different folks have different responses to medications, even OTC ones like Zyrtec. You might want to try the Zyrtec on a day not getting IVIG, just to see how you tolerate the medication. If all ok, then try it in conjunction with your infusion.

IVIG has been used in many cases of SFN with good results. If you have a positive skin biopsy, then you should not have too much of a problem getting approval for it's use. However, whether it would be as helpful for traumatic type of neuropathy vs autoimmune or even idiopathic, I don't know. But I think trying it would be logical if all other treatments have failed.

In cases of autoimmune and some idiopathic (since the cause is unknown), the IVIG actually heals the nerve to some degree, because the fiber density actually increases. This has been documented by repeat skin biopsy after a course of treatment with IVIG. Most patients receiving IVIG for SFN, get relief in regards to pain, and burning sensations...and sometimes the electrical shocks (I know some people that have report it helping this, but not everyone).

Personally, my neuropathy is past point of healing, so we only expected to slow progression (which it appears it is doing). However, I can report that my pain level is "a little" better for 3 of the 4 weeks between infusions. I know this, because that last week right before my next infusion is horrible with pain. Overall, It does NOT take even half of my pain away (like I said my damage is permanent), but any improvement is something and slowing progression is very important to me.

Thanks for the detailed reply en bloc :-) apologies its on back of another's. I have positive biopsy, but live in the UK. Also have one autoimmune already so believe strongly this is autoimmune.. On speaking to my neuro he says that the panel approving NHSfunding for this will want to know how iimprovement can be measured. Also said they may just try 1 go of it. They just don't come across this or use ivig for this and its just not approved in the NHS guidelines for SFN.
I'm looking for ' evidence' to back up the case that ivig helps SFN but there is hardly anything online.

Thanks for the info enbloc. I have taken Zyrtec in the past for allergies. It's been a while though. I will try it again before my next Rx.
It sounds like you get the same results as me from the IVIG. It helps some with the pain. I also can tell when it is getting close to my next Rx.
I don't believe mine will get any better. It's been 7 years. I'm hoping the IVIG slows the progress.
Joanna and canagirl I think if you can get it approved and your doctor thinks it will help give it a try.

Thanks Hopeful. My neurologist just doesn't know if it will help as he hasn't come across many SFNers it seems. He seems willing to try put in an application to panel though. Im going to push for it.