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Old 09-12-2007, 12:02 PM #7
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
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dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default I agree with Kmeb

and one of the issues those with CIDP have to keep in mind is that IVIG is a 'standard accepted OFF LABEL' treatment for CIDP. KEY here is the off label part.

There have been few intermittent studies as to the efficacy of IVIG for neuropathies. Here is one going on right now:
http://clinicaltrials.gov/ct/show/NCT00305266?order=1
Unfortunately this one is in Germany. The expanding uses of IVIG have created a great demand for it, while supplies are at a constant low. The manufacturers right now have little need or incentive to run any Clinical trials to get it on the ON-LABEL lists.
The following organization seems to be the only group working for those of us with many conditions needing IVIG.
http://www.neuropathyactionfoundatio...ment/index.htm

HOpe this all helps, we are all in the same leaky boat. - j
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