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Has anyone had IVIG Infusions for Neuropathy?

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

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@arcticmark

I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.

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Replies to "I have had IVIG since consistently since August and it has reduced my symptoms by 40..."

Have PN and woyld love to try IVIG. How often do you take one and what is the cost?

I to had IVIG with no improvement of symptoms, so now my Neurologist wants to try me on Retuximab but my insurance company won’t approve it unless I do plasma exchange first, which I do not want to do.
It’s very complicated doing plasmaphoresis and I’m so,afraid of getting an infection in my central line in my chest,which is what they have to insert first.
There’s also no guarantee plasma exchange will work.
I’m trying to work with Medicare now to let me bypass the plasma exchange and just get the Rituximab.

Already did it with no improvement in my symptoms.