Thread: Ivig
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Old 07-18-2015, 03:37 PM
JoannaP79 JoannaP79 is offline
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JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
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Quote:
Originally Posted by en bloc View Post
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.
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