Hi En Bloc,

I did have the blood test to check for sjorgens it was negative, I'm not sure I want to have lip biopsy, I hear it's painful and as you said could cause permanent numbness, I already suffer so much numbness, Can IVIG be used for sjorgens I have heard it's not used for this disease, my Doctor is talking about prednisone, but I have heard some bad things about that, also my sed rate is normal if I had sjorgens wouldn't that be abnormal? I'm headed to UCLA Medical center tomorrow, I am hoping they can shed more light on all of this. Thanks, Jan

The lip biopsy really isn't that bad (pain wise). I have some permanent numbness from it, but it's really a small area and not bothersome. Talk to them about what to expect.

IVIG is not FDA approved for Sjogren's alone and doesn't help with dryness issues anyway. The IVIG is helpful for neuropathy from Sjogren's and with a positive skin biopsy can easily be approved with most insurances. I did not find steroids to help my neuropathy pain (and mine is from Sjogren's) and I tried high dose IV (1 gram/day for 3 days) on several occasions over the last couple years.

Did you take prednisone what side affects if any did you have? I have Blue shield Insurance do you know if they approve IVIG, I'm sorry did you say you had IVIG? Did it help?

--and other areas besides the calf?

What you wrote is consistent, yes, with a small fiber neuroapthy, but it's hard to tell if it's length-dependent or not without a sample from closer to the body core. When my skin biopsies have been done, they've included samples from left calf near ankle, left outside thigh near hip, and left upper arm above elbow, and, at least initially, intraepidermal nerve fiber density was reduced at all locations. (I've gotten more skin biopsies since my initial acute attack in 2003 that have showed re-enervation; last one shows I am up to 11-th percentile of the normal range, and abnormal is normally defined as below the fifth percentile or above the ninety-fifth--a little arbitrary, as no one generally knows what his/her typical nerve fiber density was prior to having symptoms).

The contrast between calf and thigh is probably most indicative of length-dependency.

And, the result says nothing about demyelination; indeed, a skin biopsy doesn't generally sample myelinated nerves.

The most common side-effects with Prednisone is insomnia, GI upset (take with food), and weight gain.

I did IVIG for 9 years, but not just for neuropathy. I don't think you'd have a problem getting it approved with your skin biopsy results. It's a pretty commonly used treatment for SFN now.