Sounds like you need to find a new Rheumy if they won't order a lip biopsy. At least 40% of those with Sjogren's are what they call 'sero-negative'...meaning the antibodies are negative. Some may have a positive ANA but still have negative SSA & SSB (Sjogren's antibodies) as in MAT52's case. The lip biopsy is the gold standard, as they say for Sjogren's, so it's important to have this done...by someone that is experienced and read by a pathologist using an appropriate grading scale.

Don't worry about primary vs secondary...it really makes no difference and treatment is NO different for primary vs secondary. If you have Sjogren's then it can be mild or severe in either case. It's just a matter of knowing, so you can treat accordingly.

As for treatment, DMARDS do NOTHING for neuropathy!!! DMARDS are for symptoms relating to the Sjogrne's itself (like fatigue, dryness, and joint pain) and to help slow progression.

IVIG is the best treatment for neuropathy...and some immune suppressors, like Cellcept.

Do you have a skin biopsy to confirm the SFN? You'll need this for approval of IVIG in most cases (due to cost and insurance reluctance to approve).

So talk to your rheumy again and directly ask for the lip biopsy to confirm or rule out the Sjogren's. If he/she won't do it, then find someone else. it is really not uncommon have to see more then one or two rheumys before getting properly diagnosed. I saw several and it was almost 12 years before I was Dx...because I am sero-negative. However, my lip biopsy was so positive, it stated that it showed Sjogren's at end stage.

Be you own advocate and persistent about getting the care (and Dx) you need. The longer you wait, the harder it is to reverse nerve damage!!