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Originally Posted by en bloc
You are correct...insurance does NOT like to pay for this. But if you have a documented case for SFN (positive skin biopsy and trial and failure of other treatments) there should be no problem.
They typically will NOT cover IVIG just if you have 4 infection in a year. You must show confirmed/document PID (primary immune deficiency) on lab work...and repeated infections.
IVIG is always in short supply (it's a specialized blood product that requires up to 2000 donors to make ONE dose), so there is strict criteria to get it. Not to mention that the cost is very high. My dose just for PID (which is much lower then dosing for SFN) is about $8,000-$10,000 for one dose each month. Now that I'm starting to get higher doses for neuropathy, that cost will triple each month.
But if you can get it, you might find it's very helpful...as many others have.
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Thank you so much for your insight into IVIG and the cost. I am not certain what PID is or how to get it checked. Are there specific infections? I can get 3-4 sinus infections a year. Would that count? I am documented with SFN but not sure about "other treatment failures" Most of us with painful neuropathies take meds that only help us cope and not take the pain away completely. I suppose that could count as failure.
I'm asking all of these questions because so many drs don't know how to treat neuropathies and you have given us some valuable information. Unless you have a great specialist, your local neuro, I believe, doesn't know much about good treatments or the newest "thing" out there. Not that they are not interested. I think they just don't have the time, which is unfortunate for us.
I'll be doing some research on PID. I do hope your treatment works for you and that it makes you feel wonderfully better.