Thank you EB...

I'm not sure what the doctor was talking about… she said she knew a patient that got treated and it cost $4000 for a session. I'm going to get a skin biopsy and talk to my insurance Company...but my doctor said that Illinois Blue Cross Blue Shield is not very generous when it comes to paying for IVIG without strong testing indicating that you have an autoimmune issue...and my case is pretty weak...no test really came out out indicating an AI problem.

I will see...but recently I am now thinking that IVIG will not help...I really haven't heard of many people with pure SFN get relief with IVIG therapy...if it was you'd think at least a few people on this board that got some relief they would be shouting it out if it was the case...I know I would. And we just heard from Joanna saying she did not have a good experience with it.

So the conundrum continues.

Sven

I agree and said earlier that it works by modulating the immune system...so if there is nothing wrong with your immune system, then I don't see how it would help basic SFN (not immune mediated SFN).

IVIG carries risk and side-effects...many severe. It's not a first line treatment. Steroids should be tried first....it will at least tell you if your SFN is inflammatory based. Steroids will help (even if just a little), if it is.

You really need a skin biopsy just to confirm the SFN. I thought you already had this done. Hopefully this test will give you more information about your condition and severity. Not all skin biopsies check for morphology (actual condition of the fibers). This is important, if you get the opportunity, ask for this to be done.

Thanks for the info...I will do that...I guess that would show if the fibers are inflamed...right? And I did do a course of prednisone and I feel like it helped...what dose do you think would be appropriate for oral prednisone for a male approx. 160 lbs.? I may try another course...the neuro had me on 20mg per day and I thought that was low for trying to fight PN.

Thx again...

Sven

A trial of Prednisone can be as short as 5-7 days...and most can tell if it will help during this time. Also, this short period means no tapering off over a long period (anything over this can require a taper).

I have seen doctors use anything from a 40 mg taper to 60 mg taper (and they drop 10-20 mg every day or 2 days). You'll have to see what your doctor thinks is best.

Yes, the morphology check the condition of the fibers...for swelling, segmentation, etc.

Hi Sven, as en bloc said I would definitely get a skin biopsy. It has come in handy for many things and I keep having to 'prove' I have this for various insurance purposes.
I think ivig is worth a shot even with the risks. I tolerated it really well - unfortunately I have just had a flare up. Iv steroids again I feel are worth the attempt also.
Good luck

Hi everyone,

I had a skin punch biopsy and was less than 5% on the nerve fiber density...so that confirmed idiopathic NLD SFN.

The other news is that after being denied IVIG by my insurance a month or so ago...I got a call and they have now approved it...? Not sure why...haven't spoken to my Neuro but I am thinking they may have found somethings in the result of the biopsy...but not sure why. I plan on calling my doc tomorrow.

Anyway I have my first infusion Monday...hoping for the best.

I will keep all posted on whether I have get some help from this therapy.

Wish everyone better days... We need them!

Sven

This is great news!

Since you don't have documented immune disease, it will be interesting to see if you get positive results. There is new documentation (someone here posted an article) that IVIG can be helpful with SFN (not immune based). The proof is in the pudding, as they say. You will know in a few months if it's helpful (but can take a while for significant improvement). It is also worth suggesting to have repeat skin biopsy in a year, to document the improvement.

Please keep us posted with how you tolerate the infusions and whether you notice improvement.

Are they doing pre-medications for your infusion? Typically it consists of Tylenol, Benadryl, and IV steroids...all to help keep you from having reactions. Make sure to hydrate WELL before and during the infusion!! This is VERY important to also help keep reactions from occurring.

I'll be looking for your update next week on how you did with the first infusion.

Thx EB...

I'll keep the hydration up and the positive thoughts too...hope it helps...the crazy thing is I am having one of those great days where I feel 90% normal...and then I get this call out of the blue from the Infusion Care at the Univ. of Colo. Medical Center for scheduling the procedure. Crazy world.

I also should say that previously 2 different Neuros said that IVIG will not help my situation so my expectations are a bit tempered...one of them said that when I was coming down with my symptoms in the first 3 months back last fall...it may have stopped some of the damage from occurring. Who knows but I guess we will find out.

Anyway I'll keep the board in the loop.

Do you remember the article you mentioned...may check it out...I know I posted a study they just started in Holland for using IVIG for SFN....but haven't seen much more info.

Sven

I can't put my finger on the other article I recently saw (other than yours), but here's the Gov't NIH starting clinical trials for IVIG for idiopathic SFN....because many doctors (mine included from Johns Hopkins) think there still may be an immunological element, even in idiopathic. They would not be doing this study if there wasn't a question of it possibly working.

Intravenous Immunoglobulin Therapy for Small Fiber Neuropathy - Full Text View - ClinicalTrials.gov

Hi Sven, I'm glad for you that IVIG was approved, good luck with it!

As far as I remember, the term "The proof is in the pudding" regarding the (80% ?) success of IVIG in SFPN was mentioned in Dr Oaklander's lecture.