[jahk]

Has anyone tried IVIG for SFSN? My insurance company denied treatment, but I am considering appealing. The neuros aren't opposed to trying ivig, but are not too optimistic, even though they suspect an immune mediated sfn.

[amit]

Can you tell us more about your SFSN. How long do you suffer? how it started? What are your symptoms? ect.

[Megan]

My General Physician is recommending that I have IVIG and is going to suggest it to my Pulmonologist -who likewise mooted it a couple of months ago. If the Pulmonologist recommends and orders it, I will get it free as it will be through our wonderful Public Hospital system where we don't pay anything at all.

Have you had low IgG's? Mine are low and I'm not mounting a sufficient IgG response to infection evidently.

So I can't help you as to how it has worked but just to say that it is in the pipeline for me also.

[dahlek]

It is not covered by Medicare or other federal programs yet....
It costs $5,000-$25,000 a monthly dose. And to qualify one must meet certain criteria. That's why I'm disappointed about that one key site 'disappearing'!
Here is a precursor to that site in full-out doctor speak. Be prepared to look up all the terminology! You need it!
http://www.guidelines.gov/summary/su...=10457&string=
The following is a list of factors some doctors consider before administering IVIG. It's not the cure-all or end-all it might seem at first. There ARE risks.
http://www.ashp.org/s_ashp/docs/file...Admin-Utah.pdf

There are risks, lots of them to consider before going this route. Know well what you might be getting into.

Needless to say, testing is extensive and exhausting! The criteria are very strict and change plan-to-plan as research and clinical trials publish results.
Basic testing are the nerve conduction studies [often done more than once]; blood work, each time getting more extensive as many other med. issues are factored out; MRI's; Cat Scans; Spinal fluid tests; and when all the above is inconclusive a full-sural nerve biopsy. I aced all prior to the need of the biopsy [WHEW!]- I refused this possiblity when a different neuro posed the biopsy as I had already met the '9 out of 10' rule so to speak. I never had to leave my metro area [as in go to Mayo or Hopkins etc.] as All my testing was done here and some samples were sent to Mayo et al for further evaluation which confirmed my issues. All the neuros involved in my evaluations were professional to the best and testing took five months of agressive and tiring scheduling by me to get it all DONE! Then it took another month to get approved by my ins. co. for IVIG.

It also means a commitment for as long as you can afford it. Insurances these days can cut you off with no notice and at times, a retro notice-meaning you can be in a big financial hole. My life is ultimately scheduled around my infusions! Doc appts come second the rest of the world comes third. I can walk with a cane only because of the IVIG. It is questionable if I could without it.

Even then, IVIG is successful in about 60% of patients overall in the long term. Some folks just do not react to it well.

Do take a look at http://www.igliving.com/ and learn about this product. It's not just for those with CIDP. There are folks out there with Primary Immune, not acquired immune issues such as CIDP who really need it as much or more. You have to sign on to view past magazine issues, but it's very eye-opening about the product, it's cost, it's availability and what it does.

I hope this helps you as you go thru your tests! 's for now! - j

[LizaJane]

Wow, things I've been learning about lately....

No insurance company will approve IVIG for neuropathy unless you can document CIDP. They have gotten very very strict.

However, I too have IgG deficience (It's called Combined Variant Immunodeficiency Syndrome). It's a pretty common disorder, and it's treated with monthly IVIG. That the insurance companies are likely to approve.

They key is finding something they will approve it for and you've got it.

Now, why do you have CVID? Yes, it's common, but it's probably exceptionally common with lyme disease. So, the question I've been asking everyone lately: Have you been tested for lyme at one of the ILADS recommended lyme labs, which I've posted in my sticky?

If not, I suggest you get tested. I used Igenex, but the other two are supposed to be fine, also.

There's some talk about whether IVIG will help make lyme treatment more effective, but at this point my doctor wants to do just one step at a time, so despite the CVID, I'm just on antibiotics and we'll see how that goes.