Thanks Enbloc. The links are really useful! And I think I am generally doing better just now although I had a flare up of SFN and the rest last weekend that's only just startling to settle again now. My guess is that it is actually starting to kick in and symptoms overall are suddenly all feeling an improvement from yesterday. It's just the wretched night weakness that has seemingly got a bit worse but maybe that's just after a five day flare up of SFN. They do seem to belong together and I appreciate your suggestion that Sjogrens is a very complex disease that brings on mysterious symptoms that come and go. This one is consistently there though so I guess it has more to do with fatigue and insomnia than the rest. I've almost accepted it as a kind of ME really. It would be great if the Cellcept addressed it but my expectations really aren't that high for this particular symptom as it's been with me for so long now and is definitely getting worse.

The Schirmers will have to be the one thing we disagree about I think. I believe the UK (and Scotland) might be ahead of the US on this. I say this because of what I read but also because a friend attends the internationally reknowned Moorfield Eye Hospital in London for her Sjogrens and they have never used the Schirmers and she said they feel it unnecessary to measure her tear production in this way.

In the U.K opticians are often highly sophisticated now and have access to the most cutting edge technology and techniques - and this is the case for the one I'm to see this month - who specialises in autoimmunity because his wife has MCTD. He told me on the phone that Schirmers is only conducted in certain rather antiquated hospital rheumatology departments now because they can't afford the most cutting edge equipment available and haven't moved with the times. He explained that the important measurement is the quality of tears and how well they pass over the surface of the eye. Also measuring how long between blinks we can go etc. In the early stages of SS many have rhinitis so tear production isn't the issue for these people - they can't stop and even with anaesthetic drops (which admittedly weren't used for me on the only occasion I was given the Schirmers!) it aggravates more than it solves. My instincts say he is right. Anyway once we are using drops and ointments/gels regularly - the results will be skewed and also many medications we take can influence tear production.

Plus, as you said yourself, symptoms of Sjogrens can wax and wane so the periods of sicca flare are measured more importantly by studying the impact of flares on the eye. Certainly mine improve for quite long periods for no rhyme or reason but are quite horrendous at other times - and this state can last for months with me similarly to the SFN.

Something wonderful I've noticed though - the foul taste which has dominated my life so much recently has gone away! I think probably this is because I've discovered that Ranitidine/ Zantac taken twice a day - works better for my GERD than PPIs such as Lansoperazole for me. But then again perhaps it is related to tear or saliva production and maybe Cellcept is helping with this where nothing else has? I guess the test will be if I stop taking Ranitidine for a while and also how my PV is when I get it checked in a few weeks time. Reluctant to push my luck on this one though and I fear oesophagal damage a lot.

Oh yes and while I am on the subject of inflammatory markers - the PV seems to be a blood test that is more sophisticated and is slowly replacing the older Sed Rate/ESR, which people from far flung places often speak about?! (just teasing!). PV is thought to be more reliable because it doesn't change according to age, gender or body weight as ESR does. Any thoughts?

I thought you might be interested, as a PsA sufferer yourself with a very high sed rate, to know that a former doctor friend of mine with PsA told me that PsA is the disease that causes a very high sed rate/ PV rather than the Sjogrens lack of moisture, as I've previously been told by my rheum.

This distinction is important to me because the young rheum registrar told me that they won't be able to monitor the effectiveness of the Cellcept by looking at my blood test results because Sjogrens bloods don't reflect active disease. But I'm convinced that mine do fluctuate according to disease activity/ SFN and should be part of my clinical monitoring.

I think, from reading posts here and on the Sjogrens World forums and several SS Facebook groups, the international medical world is being very slow to acknowledge Sjogrens SFN and ganglionopathy/ dysautonomia as an immune mediated/ inflammatory neuropathy. To its credit at least my new hospital haven't relied on saliva production tests or Schirmers or nerve conduction studies or even my formerly negative skin biopsy result, to diagnose Sjogrens and allow me this trial of Cellcept. The vast majority of Sjogrens sufferers everywhere don't get offered disease modifying treatment apart from Plaquenil - and this is defintely not just UK sufferers - it applies to the majority of Sjogrens people the world over. I count myself as lucky to get this opportunity where others are not investigated for Sjogrens unless their autoantibodies represent them or they have a positive Schirmers. For this more enlightened view I thank my lucky stars!