Hi All. I've got a theory and want to try it out here. I'm on my tenth week of Cellcept for Sjogren's - for mainly a neurological presentation - although I have all the classic Sjogrens symptoms too.

A few weeks ago I had a bad pain flare up in my legs and arms each night while resting. Meanwhile my Raynauds-type symptoms have worsened - but I am in Scotland where it's been cold and am warming up from horrible all over chills by having hot baths of an afternoon so toes and soles turn bright white when they touch warm water. I'm increasingly confident that this is because of the SFN rather than Raynauds - same for shiny skin on soles and hands plus funny little red spider veins on palms, finger tips nail beds and face. Oh and my prune finger tips too - all more pronounced when SFN is flaring.

So my theory is that, by suppressing my overactive immune system, the Cellcept is waking up my dormant small nerve fibres and reducing the inflammation in my blood vessels too. And perhaps this is responsible for surge in glove/ stocking pain and surge in facial tingle and BMS?

My neurologist says numbness is a "negative symptom" - meaning irreversible damage. And she says this is what has been causing my disequillibrium over the past few years, along with some mild autonomic issues. I don't doubt that she's right. My rheumatologist says that the SFN of Sjogrens is generally self limiting - and in my case I was thinking this must be right because the burning pain and electric shock pain had gone and has been replaced mostly by an icy tingle/ crawling.

But here's the thing - my disequillibrium is much better just now and I've been able to abandon my cane and am less apt to clutch at railings or family members and no longer feel so off kilter. Same thing happened when I was on steroids. And yet legs are still icy and wet feeling and pain is also in the ascent - especially after hot baths or showers and during the early hours when it wakes me like a grand toothache in feet, ankles, shins, knees and same for arms too. I also have heavy duty spasm in one eyebrow whenever I blink - a new location for a longstanding symptom (i.e. twitching eyes).

So could this flare perhaps be BECAUSE the Cellcept is working in the way I'm suggesting, or am I just clutching at straws here?