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giarc60
@giarc60

Posts: 3
Joined: Jul 13, 2018

IVIG Infusions

Posted by @giarc60, Thu, Oct 11 5:55pm

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Liked by maryy

REPLY

About 5 years into this god forsaken condition and after about 25 different medications I was given 2 IVIG's. It will not come as a surprise to any of us that those 2 infusions did nothing and the disease continues its relentless deterioration of my life.

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

Liked by maryy

I took IVIG only once (5 days) and it did not work for me. I think I got even worse. Tingling has increased. No improvement

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