You are very lucky based upon what you've reported about your experience...that has taken a long time to get to where you're at. I only hope you get to continue your treatment or try something else if this doesn't produce the results they are looking for.

I have been on the Sjogren's World forum and here for years and most with just Sjogren's symptoms of sicca and some mild organ involvement get Plaquenil, but anyone with neuropathy or major organ involvement gets Cellcept, MTX, or some other immune suppressant or IVIG...without having to fight for it. But the 'vast majority' of Sjogren's sufferers don't have major organ involvement or neuropathy....so you're right. Those only get Plaquenil because that is all they need. You are one of the few I know that has to fight to get treatment when there is clear neuro involvement. Plaquenil does NOTHING for neuro involvement, and doctors know this, so must treat with immune suppressants or IVIG.

The ESR test isn't used as often any more. CRP is the gold standard for inflammation markers. However, my rheumy knows that PsA and Sjogren's shows more often in ESR vs CRP, so runs both. When I have a major flare of PsA (and a joint is in full flare/swelling) the ESR is off the chart, yet CRP not so much. So it's obvious that the ESR does reflect inflammation in certain conditions more so than others. The PV isn't used as often here either...unless we run it under another name.

So how does the UK measure tear production? The Rose Bengal, slit lamp, etc do not determine tear production. I have heard of people having the Schirmer's like you had it done...it was not done properly. Frankly, I don't know if the ophthalmologists would use the Schirmer's if they had their way...but Rheumatologists still have it as part of diagnostic criteria across the globe for Sjogren's. Maybe this needs to change. The gold standard for Sjogren's is NOT the Schirmer's (this is just a tool to gauge tear production) or even the blood markers. The gold standard is the lip biopsy.

Everyone is different and many patients have blood tests that follow their symptoms/flares. Just like you ,I am the same way and my blood tests will reflect flares/inflammation. Maybe they will make it part of your monitoring.