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Old 06-21-2016, 10:21 PM
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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I agree with Still Hoping that IVIG is known to be helpful with autoimmune based SFN. It works by modulating the immune system...so if there is nothing wrong with your immune system, then logically, I don't see how it would help your SFN. That being said, testing for autoimmune disease is limited and up to 40% of patients are what they call sero-negative, meaning their labs are negative, yet they are still confirmed (by other means, like biopsy) to have autoimmune disease. So it is very possible that you do have an autoimmune based SFN yet your labs are negative. In this case, it might help.

However, IVIG is VERY expensive and I'm not sure how she came up with the 8K per month. I receive IVIG and my cost is just under 27K per month...and I don't even receive the full neuropathy dose of 2 gm/kg (I receive 1 gm/kg). Not to mention, neuropathy dosing typically starts with 3-5 days (in a row) of a 'loading dose', then once a month after that. You should get a proper quote (in writing) from the place administering the IVIG before you begin. Just a thought.
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