Thread: Ivig
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Old 05-06-2015, 07:49 AM
en bloc's Avatar
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 was hesitant at first to reply, because I, personally, don't have anything wonderful to report about the success of IVIG for SFN. But I chose to reply anyway with hopes you realize and keep in mind that everyone is different and we may have different causes to our neuropathy and therefore different goals and responses.

I started using IVIG for my immune deficiency from 1996 to 2006. Then restarted in 2013, again for my immune deficiency. But in early 2104, my neurologist increased the dose significantly to use IVIG to slow progression of my long standing PN/SFN/AN. My neuropathy is from Sjogren's (autoimmune disease) and it has attacked and damaged the dorsal root ganglia (confirmed by special MRI/MRN). This type of damage is not typically reversible, and the reason we never tried before to use the higher doses of IVIG required to treat neuropathy. But there is some data that shows IVIG can help to slow the progression of the damage and in some cases help certain aspects of PN.

I don't have huge problems with burning like many here with SFN. My neuropathy causes me sensory loss and PAIN...considerable pain (but not full body). But the most severe aspect of my neuropathy is autonomic dysfunction. So my goals for IVIG are likely far different from yours. We are trying to simply slow/halt progression of this autonomic process, not reverse the damage that is already there. We also hope to improve some aspects of PN, like proprioception, which is the cause of my many falls...and to keep my pain from getting worse. Therefore, my IVIG results are not so easy to 'see'...we are just hoping to 'not see' any more progression. So, I don't get relief from the pain like you would expect, because that damage cannot be fixed for me. I will say that I see improvement in the allodynia (hypersensitivity of surface nerves) since using the IVIG for PN.

Your SFN is more inline with the types KNOWN to be helped by IVIG. So I hope you will have good results. Keep in mind that it is a 'big gun' treatment that carries a lot of risks. One of the reasons I listed the start dates of my IVIG treatment is so you can see YEARS of treatment, then a big gap. That big gap is from a severe reaction to IVIG in 2006. Yes, even after years of using this, it's is possible to have severe reactions with any dose. I got a severe case of aseptic meningitis...with white cells in spinal fluid over 700 (normal is under 10). I was in the hospital for a week and it took another month to recover. I don't tell you this to scare you...just to inform you of the risks.

Follow all the tips they give you...like hydration before the infusion (very important), take your pre-meds, and report any problems during the infusion immediately (don't try to tough it out if you start to get a headache or other symptoms).

Hope this is helpful.
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