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Small fiber neuropathy and IVIg treatments

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Unread 07-15-2010, 04:14 PM   #1
katenyc
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Default Small fiber neuropathy and IVIg treatments

Hi, it is believed that I have small fiber neuropathy [even though the skin test came back negative]. I have burning anywhere from head to foot that comes & goes, including burning 24/7 on my tongue. This has been happening for about a year and hasn't really gotten too much worse, but deifnitely flares up especially during stressful times. I also have had tests run on my autonomic nervous system which had abnormal results, and blood tests show an elevated polyclonal protein, indicative of autoimmune and/or inflammation.

IVIg therapy has been recommended but I have been concerned about the risks. Has anyone else tried this therapy for neuropathy and had any success?

Thanks. Kate
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Unread 07-15-2010, 06:29 PM   #2
dahlek
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Default katenyc? I've been diagnosed with an immune neuropathy for ...

a long time. It started in '03, was diagnosed in '04 and I've had IVIG since then?
A good place to start and learn about IVIG is here: http://www.igliving.com/AboutUs.aspx
While it is 'sponsored' by IVIG manufacturers and distributors? It is also very patient responsive! IF you ask their staff a question? You get an answer in less than 10 working days! Amazing in my humble opinion.
IF you sign on? They have on-line access to all past magazine issues, and a few back, they had articles about how IVIG is made, how safe it is and how it's distributed. AND no junk mail!
Most folks can tolerate IVIG. About 15-25% can't tho, or there is no affect from it's use. But, no-effect could be that the dose wasn't enough. That often happens with ultra conservative docs.
I felt success during my very first four day loading doses! I found I could walk 4 times longer than before treatments and that I didn't have to sleep for five days after the exertion to catch up! It is dreadfully scary expensive at first look? BUT-IF you have good insurance? Once you meet your catastrophic deductible? The rest is pure coasting!
FYI? My infusion co BILLS my insurance over $30k per infusion? But they only pay $6k+/- and your portion is yearly the amount of the catastrophic deductable.. one time each year... something to budget for IF it works. [That's all negotiated prior to the new calendar year]
All that stuff is negotiated by the insurance company and the infusion provider service. So don't panic because of huge bills...ever!
IVIG works for between 40-80% of those who use it.....again I believe the stats are off kilter due to the dosages and brands used.
I found that it at first stopped my neuropathy progression in it's tracks! But then my body got more 'aggressive' and I've needed higher doses. I was once evaluated by a regional teaching hospital neuro dept head who thot I'd have to be in a wheelchair before getting IVIG? I responded to him: Well, I'm not, and it's due to the IVIG!
It's usually safe and there are safety precautions to follow.... but IF they are followed? Try it! It's either gonna work? [YEAH!] or not.
My decision to try it is that it really seemed to be the most 'organic' treatment. Plasmapheresis carries some more likeliehood of infections at the PP site. Steroids were OUT for me due to pending Osteoporosis. And Overall, I have done well on it. As I know others have as well.
It's both scary and interesting at first? Be sure to ask questions! Why this? What's that? Get a copy of and KNOW which brand of IVIG you are being prescribed...this is IMPORTANT as some brands aren't good for folks with some different IG values. After the fourth or fith time? It gets BORING! Prepare to doze!
Ask more questions please, I was where you were a few years ago! Just HOPING that it works!!!! 's
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Unread 07-16-2010, 01:00 PM   #3
Laurie43
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Hi,

I received IVIG in the fall. I got very sick at first with diarreha and body aches but the nurse gave me tylenol and benedryl which helped greatly. My neuropathy did respond, but my insurance decided to stop paying in February of this year.

I am still doing well though. There are no adverse effects from trying the therapy. If your insurance will pay - I would go for it.
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Unread 07-16-2010, 03:37 PM   #4
katenyc
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Laurie, did your neuropathy get worse again after you stopped? Glad you didn't have any adverse affects from it [or the ones that you did were treated]. If your insurance approved again, would you do it?

Kate

Quote:
Originally Posted by Laurie43 View Post
Hi,

I received IVIG in the fall. I got very sick at first with diarreha and body aches but the nurse gave me tylenol and benedryl which helped greatly. My neuropathy did respond, but my insurance decided to stop paying in February of this year.

I am still doing well though. There are no adverse effects from trying the therapy. If your insurance will pay - I would go for it.
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