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Has anyone tried IVIG infusions for neuropathy?

Neuropathy | Last Active: 3 days ago | Replies (23)

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Profile picture for laurenthewise1 @laurenthewise1

From my prior comment I'd really like to emphasize that I believe that if the root cause of your small fiber neuropathy is autoimmune (for example Sjogren's disease) that IVIG might be beneficial. If it is due to another cause, chemical damage from chemotherapy or other drug injury or non-autoimmune types of diabetes it might not help. With IVIG you're literally flooding your immune system with the antibodies of thousands of donors whose bodies have encountered all types of viruses and infections and likely fought them successfully in order to boost your own immune response. I think it's a reasonable course of action if you have a diagnosed autoimmune disease or possibly even if your SFN is caused by a tick borne disease (they can be notoriously difficult to document). I DID have several positive ANAs and other red flags for autoimmune disease which was why IVIG was recommended. I have also had many ANAs that are negative or inconclusive to a specific disease both before and after so in my case that was probably coincidental to the SFN. I really wish you the best. I have had this 2006 (diagnosed 2008) and it has taken a HUGE toll on my life and completely reshaped my idea of what my "golden years" will be like. But I try to accept as best as I can and physically do as much as I can, which always makes me feel better even though the soreness lasts longer than it used to. I don't give up and if you shouldn't either.

I just wanted to pass along my thoughts on the subject. In my mind I *have* to try everything that might possibly help because if I don't I'll never know if it would have worked and will always wonder. I have had ALL the genetic testing and infectious disease testing out there and nothing is standing out as a cause. So we keep on. I just really wanted you to have an understanding of expectations before you do it.

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Replies to "From my prior comment I'd really like to emphasize that I believe that if the root..."

@laurenthewise1 (I love the name!) I am taken IvIg every 3 weeks for neuropathy caused by SFN caused by Sjogren's and I would have to say it's working because I should be in pain but I'm not. I also take LDN but I don't think it handles that kind of pain. I have no other explanation.