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Has anyone had IVIG Infusions for Neuropathy?

Neuropathy | Last Active: Oct 3 7:57am | Replies (491)

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@emo

I’m not familiar with your condition or autoimmunity, but I have FGFR3 positive small fiber neuropathy (it’s an antibody that should be in low numbers in the body, but for people who have it extremely high, it’s associated with SFN). There’s very limited research that has suggested IVIG has helped people like me, but it’s still considered experimental and has been for years.

I was seen at Mayo Jacksonville and the internal medicine physician coordinating my care said it sounded like “a stretch” to use IVIG to tread small fiber neuropathy. He referred me to Neurology anyway, but the neurologist I was referred to said that was outside of his area of expertise and they didn’t even recommend anyone else.

I was also seen by Neurology in Rochester years ago; they confirmed my SFN diagnosis, but just recommended the usual (gabapentin/Lyrica, capsaicin, acupuncture, chronic pain program, etc.)

I’m just one case study, but my sense in both situations was they were highly skeptical of IVIG for SFN. I have heard of others who did it at Johns Hopkins for what that’s worth.

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Replies to "I’m not familiar with your condition or autoimmunity, but I have FGFR3 positive small fiber neuropathy..."

I have been going for IVIG infusions to forestall further nerve inflammation from an autoimmune reaction to either spinal surgery, stenosis before it, anesthesia, or infections not related to the surgery. I was seen by two neurologists who confirmed by elimination of other factors the autoimmune cause of my long fiber, axonal peripheral neuropathy.
Almost immediately, I noticed greater mobility in my legs when I was lifting them, and greater strength over time, and with consistent PT.
I would hope you could find a neurologist who was willing to try IVIG with your autoimmune diagnosis, and see what the results are for your functioning.
I am able to continue my IVIG infusions with insurance coverage for the next year, and will continue also with PT to help with my strength and balance. Good luck!