Has anyone had IVIG Infusions for Neuropathy?

Do any of the Mayo docs prescribe IVIG for SFN caused by positive ANA and positive dsDNA?

I went to go see a research neurologist that specializes in neuropathy and she told me if I lived in Boston she would start me on it. She advised me to see four doctors immunologist, Rhuematoidologist, neuromuscular physical therapist and a neuromuscular neurologist.

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.

I was diagnosed with Peripheral Neuropathy 2 years ago but I've had it for several years.
I received Oxaliplatin for Colon cancer 10 years ago and the outcome was a cure for the cancer but almost disabling Peripherial Neuropathy that seems to be getting worse especially after 3 bouts with Covid. I assumed there were no medicines that could help the neuropathy.
I just read about Amyvuttra that could help with neuropathy. Has anyone tried it?

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!

Hi @angielewis1959, I haven’t seen any posts where members have mentioned trying Amyvuttra but @steeldove posted some research information on the drug here - https://connect.mayoclinic.org/comment/717559/. It looks like the FDA approval was specifically for the treatment of the polyneuropathy associated with hereditary transthyretin-mediated (hATTR) amyloidosis in adults.

--- FDA Approves Amvuttra for Neuropathy Associated with Rare Disease: https://www.formularywatch.com/view/fda-approves-amvuttra-for-neuropathy-associated-with-rare-disease

Thanks for sharing that, and I’m glad it’s working for you!

I don’t quite understand it all, to be honest. Even the Mayo physicians were skeptical of IVIG. For years, since my original neurologist left, I feel like a crazy person trying to explain it to neurologists. I suspect the issue is I have no other markers of autoimmunity except this autoantibody that doesn’t have enough research yet to explain what it means. In addition to the SFN, I have seronegative spondyloarthropathy (Seronegative = No markers in blood tests).

With the autoantibody markers I have, there are studies that link it to small fiber neuropathy, but all the studies are small, and there’s conflicting results with IVIG. So it seems the benefit is uncertain, it’s difficult to get insurance coverage because it’s considered experimental for my condition, and it’s a big undertaking, which all seeks to contribute to neurologists’ hesitation.

My neurologist at home helped me get an appointment with another neurologist at Johns Hopkins. He wants to get a second opinion first, so we agreed to see what he thinks before going forward.

Thank you so much for sharing. I’ve come across very few people with similar conditions who tried IVIG.

This is a slow process, and your Johns Hopkins neurologist asking for a second opinion is an encouraging sign of medical humility. My main neurologist also sought another pair of neurology eyes at Massachusetts General, and it was their concurrence that opened the way for IVIG. Nothing in this disease is a guarantee, as you know from your knowledge of the research studies. However, if insurance covers it and both neurologists agree to try it, I hope you do. Best of luck!

I have been started IvIg infusions, which my immunologist felt was appropriate due to a mutation in my SAMD9L gene, even though the mutation is of "uncertain significance, but likely to be disruptive" of function based on computer modeling. The first brand of IvIg tried was Octagam which a I had an allergic reaction to. The second is Bivigam which I seem to be tolerating better. They also are infusing me with Solumedrol (soluble cortisol) because I have adrenal insufficiency (Addison's disease) and cortisol temporarily suppresses the immune system. I follow all the infusion instructions, like being completely hydrated and taking two different antihistamines, again to control the immune response. Different doctors use different infusion strategies: some go full strength immediately and others use a slower approach gradient. I'm following the latter strategy. I am determined to make this work because I am in so much pain, and nothing else works. Opioids, which did partially work, are no longer available.

I hope it works for you. If I have the opportunity to try IVIG, I’d also ask to start slowly to make it easier to identify and manage any side effects. I have central sensitization and that approach usually works best.