I think I'm probably ideally placed to reply to this, having been diagnosed with seronegative RA five years ago and treated with four DMARDs which I had severe reactions to. My RA symptoms never came back but the neurological symptoms have continued and progressed. Finally I've been rediagnosed with primary Sjogrens on the strength of a very positive lip biopsy result three months ago. I had to wait for RA drugs and steroids to be fully out of my system to be taken seriously though. I've also relocated a couple of times, which led to my autoantibody bloods being retested in a new hospital. My ANA had switched from negative to clear positive and this led the new rheumy to ponder what could be causing my clinically diagnosed small fibre neuropathy - hence lip biopsy. You would need to be well clear of all RA meds to make this worthwhile though. And secondary Sjogrens can be just as severe and sometimes more active and more of a problem for you than the primary disease. However lots of rheumies seem not to realise this and refuse to acknowledge that Sjogrens can be the more severe disease or even that RA is secondary to the pre-existing Sjogrens - as I believe was the case with me. I too read the Sjogrens Book and my life seemed to fall into place. I think I've had it forever and my hypothyroidism and RA were both part of my Sjogrens. My new rheumatologist and neurologist both agree with my theory.

The bad news is that, apart from Plaquenil, there are usually no treatments offered for Sjogrens apart from topical ones and symptomatic nerve pain meds. I know that this is a great source of misery for many sufferers and things do seem to be improving in the US - with Sjogrens World Foundation and Dr Mandel's excellent articles and Professor Birnbaum's work at the John Hopkins. But I am not sure this has yet filtered out across the international rheumatology or neurology communities yet.