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Old 12-07-2012, 08:54 PM #21
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I thought protocol was to do a loading dose of 3-5 days. This is what I had (years ago) and others I've talked to both then and recently. It takes a while to be effective and I would guess not doing a loading dose would mean it would take even longer. I would ask your doctor next time you see him, just to get his position on why he didn't do it.
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Old 12-08-2012, 03:06 PM #22
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enbloc....I agree with you

ivig dosing protocol (at least with CIDP) is 2gm/kg loading dose over 3-5 days, then 0.5gm-1gm/kg every 3-4 weeks thereafter

hopeful....dunno why your neuro did not give you an initial loading dose to start with...maybe your sfn dx?
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Old 12-10-2012, 10:01 AM #23
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I went thru 3 years of it, and frankly, it didn't change the course of my disease and I got extremely bad headaches from it. I started to freak when my kidney function started to deteriorate. I nixed it. I don't think they know enough about how the body works. I am done being a guinea pig. I am hoping it cleaned my brain out tho, so I don't get Alzheimers.
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Old 12-10-2012, 03:52 PM #24
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general question to anyone

is ivig FDA approved for "pure" small fiber neuropathy?
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Old 12-10-2012, 04:29 PM #25
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This link has FDA approved uses, and off label uses:

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

In this link is a short statement about using IVIG to prevent Alzheimer's progression...a new study published in 2012.
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Old 12-11-2012, 06:41 PM #26
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Quote:
Originally Posted by en bloc View Post
I thought protocol was to do a loading dose of 3-5 days. This is what I had (years ago) and others I've talked to both then and recently. It takes a while to be effective and I would guess not doing a loading dose would mean it would take even longer. I would ask your doctor next time you see him, just to get his position on why he didn't do it.
I am going to ask my doctor when I see him again. It seems to me that everyone I have spoken to said they had a loading dose. I was wondering if it had anything to do with insurance. I'll find out.
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Old 12-12-2012, 07:54 AM #27
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Quote:
Originally Posted by mrsD View Post
This link has FDA approved uses, and off label uses:

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

In this link is a short statement about using IVIG to prevent Alzheimer's progression...a new study published in 2012.
Given the way my head felt after I had an infusion, it probably cleaned my clock pretty well.
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Old 12-14-2012, 02:35 PM #28
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I'm in UK and started IVIG nearly a year ago and I got started with loading dose over 5 days.
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