--post about getting Intravenous immunolglobulin (IVIg) over the years for a variety of conditions--if you search with 'IVIg' you'll pull up a whole host of threads (and not just threads involving people with neuropathy, but also people with a large range of suspected autoimmune conditions).

IVIg is very expensive, does not work for everyone, and often comes with side effects of its own. The mechanism by how it works, when it does, is not well understood, though it is thought that it cleans out rogue autoantibodies that are attacking bodily tissue. The effect, though, varies in how long it lasts, so many for whom it works are looking at a long treatment regimen--the infusions have to be repeated at regular intervals as the effects diminish and symptoms return.

Part of the controversy (beyond the expense) is that many insurances won't pay for such treatments without incontrovertible evidence of autoimmunity. this is tricky, particularly in conditions in which the autoantibodies are not the standard anti-nuclear antibody (ANA) variants found in various vascular/connective tissue disorders (i.e., lupus, Bechet's, Sjogren's, polyarteritis nodosa . . .). Many of the autoantibodies to peripheral nerve, for example, have only been discovered/identified over the last two decades and it is thought there may be various others still unidentified and in some cases they may be unique to the individual and his/her tissue types (there's a lot of work going on in this area now with the human genome research), so one really needs a strong medical advocate to push for said treatment.

Some well known research neurologists are strong advocates for this type of treatment when autoimmune mechanisms are suspected (Dr. Norman Latov at the Cornell-Weill Center for Peripheral Neuropathy being a notable example). Still, opinions about its utility vary, even among research neuros at the same facility.

You might want to check out IVIg Living:

http://www.igliving.com/

--as well as the GBS-CIDP foundation (many people with Guillain Barre Syndrome and/or Chronic Inflammatory Demyelinating Polyneuropathy have received IVIg treatments):

http://www.gbs-cidp.org/

--for more information and individual experiences.

Hi all, I will keep you posted on how I do with the lyrica. My neurologist explained that neurontin and lyrica are sister drugs but for some reason some people do better with one than the other, and people generally have said they feel less sedated on lyrica. I don't know but figured it was worth a try. And I am now getting organized about all of the good suggestions here about supplements and creams, also starting at a new gym with a trainer Monday, hoping some balance of exercise, nutritional focus, lyrica, and Tramadol will give some relief. Tramadol really is the one thing that seems to take a little edge off, and I am very aware quickly by the pain level when I skip or forget for a few hours.

As for ivig question, I have not discussed it with my doc, but I was given high dose steroid infusions for 2 months, with no success. My neuro's theory was that this SFN is likely caused by autoimmune, and hoped the steroids would stop the immune system attack and wipe out the SFN. He seems to still be looking for autoimmune but has not mentioned other treatments like ivig. I think some do get relief from steroid treatments.

Hey Jack ,
I'm on only 75mg of lyrica at night and if I miss it-i get the exact sensations you talk about!

Not that I want to promote narcotics, because they are addictive-but the fentanyl patch has reduced my severe burning by 60-100℅, depending on the day/hour/stress

I take benfotiamine and b12 for good measure-since pain relievers don't fix anything!
I'm giving self hypnosis/relaxation a shot as well.
We can't underestimate the healing power of our mind
Best,
Feather

[QUOTE=SFNgirl;980154]Hi all, I also have SFN, diagnosed in January. Went up to 2700 mg of gabapentin, and had no perceptible pain relief but was wiped out. My neuro told me to take one pill away at a time every 3 days until off completely. Then worked my way up to 3 x100mg lyrica per day. Just got to this level, so can't say yet, but seems a bit better. I have actually lost weight through this whole experience, which came out of the blue in October, and seem to have no appetite. Doc thinks it may be the autonomic stuff impacting my stomache and digestion. Anyway, I know others who are pretty happy with lyrica so we'll see

Hi SFgirl
I also have SFN and take lyrica. I started taking last Dec,. Its going on to 5mos since I started ( I do not see much improvement yet). I am only on 225, I am sensitive to meds so Im going slowly. Do you have any side effects yet? Is 300 helping you, I hope to get relief by 300 mgs. I have not gained any weight either and it seems I have less of an appetite these days too. Why does your Doc think its "autonomic stuff", Do you have stomach or digestion problems or any autonomic symptoms? So far my stom and digestion are normal. Just some constipation from taking lyrica.