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Has anyone had IVIG Infusions for Neuropathy?

Neuropathy | Last Active: May 29 7:12pm | Replies (422)

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@margaret10

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.

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Replies to "I have been started IvIg infusions, which my immunologist felt was appropriate due to a mutation..."

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.