They have brought up Rituxan to me, but I am scared as I had Lyme, and I am worried about two things, one is a mouse chimeric monoclonal antibody...(Borrelia the organism that causes Lyme spends part of its life cycle in a mouse) and two, if I cause severe immunosuppression and the Lyme or some other germ roars back....then what. So, I am not sure what to do. Human monoclonal antibodies will soon be out and I wonder if I can wait until that happens. If not, then I will have to try Rituxan, and take the risk.

My doc said they are using Rituxan for neuropathy of sarc, with good luck. But you don't think it helped...hmmm, maybe it won't help the neuropathy I have much either. On the other hand, the other symptoms I have that are not related to PN are debilitating too.

I suppose cellcept is an option that could be combined with IVIG. That has its downsides too.

I keep thinking at some point, something will force my hand.

Hello! I know this is a very old thread, but I found it so interesting and so helpful that I had to reply. Cycleops and Raglet, your problems sound so similar to mine. I've also wanted information about how autoimmune diseases cause PN and how circulation affects nerves... my rheumatologists (and I've seen 3) keep telling me that my neurological symptoms are not related to my autoimmune disease even though all of my symptoms started up at the same time.

Cycleops, I'm intrigued that you had symptoms for so long before your bloodwork turned positive. I'm also very interested to hear about your skin sensations (the tightness/pulling sensation that may or may not be related to scleroderma). I'm also interested in the Lyme connection because I was bitten by a tick a decade ago; it stayed embedded in my leg for a couple days before I noticed and I was not treated with antibiotics at the time. I didn't get sick immediately, but gradually over time developed these problems.

I have a +ANA (1:640 speckled) and I once tested positive for Rheumatoid Factor though I've tested negative twice since then. The ANA remains at positive at the same level. I've had the whole antibody panel for Connective Tissue Diseases run twice (a year apart) and they were all negative other than that +RF the first time around. The first rheumatologist said I had UCTD and thought it was heading towards scleroderma because I'd developed bad heartburn, Raynaud's, and those skin sensations you described though NO actual skin changes yet. He retired and I got a new rheumatologist who said she doesn't even feel sure I have a connective tissue disease at all. She was thinking MS because of all the neurological stuff. That was ruled out by a neurologist though. I have no diagnosis other than the neuropathy. She also told me that she doesn't think my "vasomotor dysfunction" is Raynaud's because it's predominantly in my feet (Raynaud's is usually much worse in the hands) and I don't get the 3-phase colour changes, just a blotchy black/white type of discolouration. But I definitely have vasospasms...

Anyway, I am curious to hear how you're doing now since these posts are a couple years old. I hope that things have improved for you and that you've found an effective treatment for controlling your symptoms. Did you end up with a scleroderma diagnosis or is it still primary Sjogren's?

All the best!