That's really interesting, thank you
I'm now going to Google the dye test. This has never been brought to my attention nor the perception of the schirmers test. Can someone explain why experts in their profession just don't know or tell you of these things. If this was my job I'd want to know everything. I don't get it. On a more forgiving note my rheumatologist did say she had never come across someone with sfn let alone with full body wide presentation like mine.

Ach it's so sad isn't it? One day I bet most will be found to have autoimmunity if doctors keep checking. But they so often don't once they have landed their "all of the mind" labels.

So here's what I think you should do if you are in the U.K - or maybe anyehere depending on whether Sjogrens is taken seriously: Avoid the Schirmers and ask an optometrist or eye doctor to test you just for tear break up or Rose Bengal. The Schirmers sucks - it's just no good.

Then, whatever the outcome, find out what your inflammation levels are doing - this is cheap and easy to do along with your full blood count. If there is anything that suggests that you have inflammation (in my case inflammatory bloods and spinal fluid - which the rheumatologist no.2 still managed to ignore!!) then find an oral consultant/ dentist who can perform a lip biopsy. This is the only way you will get a confirmed diagnosis of Sjogrens or exclude it finally.

But you need to have a good reason to go through all these invasive investigations for a diagnosis because even if Sjogrens is confirmed through lip biopsy, bloods and CSF - they may not offer you any treatment beyond antidepressants or anticonvulsants. I was lucky to be misdiagnosed with RA five years ago but I've had to fight hard every step of the way to get the right diagnosis and hopefully an effective treatment. Most people with Sjogrens aren't as "lucky" and can't or won't persevere as I have. Best of luck, Mat

Certainly, they gave you the Cellcept for more than just RA pain. It is an immunosuppressant that covers many symptoms in the autoimmune disease process...including neuropathy/SFN, Sjogren's symptom mgmt, and even goal of remission!! Here's a couple articles about the use of Cellcept.


Conquering Sjogren's | Cellcept

Mycophenolate sodium treatment in patients with primary Sjogren syndrome: a pilot trial

I have experienced the heavy limbs, as you describe (when resting), but I could move them when I tried (which I guess you can, as well). They assumed the cause was the neuropathy. However, it did finally go away, so I hope yours does as well. You'll learn that many symptoms you get with Sjogren's will wax/wane over time. Symptoms may last for days or weeks or months and then go away as fast as they come on. There is no rhyme or reason for symptoms of Sjogren's...it's as if the disease has a mind of its own!! I can only suggest that you continue to use your limbs as much as possible (simple exercises) to keep the muscles strong. You don't want to add muscle wasting to your list of problems from lack of use. So the more they feel weak, the more you should use them to keep them strong.

I don't think the Schirmer's test is 'primitive'...but Scotland's way of performing the test may be...LOL Most ophthalmologists here in the US use the numbing drops to not only keep patients more comfortable, but then they get a more accurate test, since the tears aren't being produced from irritation. Done properly the test can show whether or not the patient is producing enough tears...and it is still an important part of the diagnostic criteria for Sjogren's...both here and in the European community. I'm sure the Schirmer's 'sucked' the way you had it done, but doctors here also perform the rose bengal, slit lamp, and various other high tech microscopic testing. But these tests do NOT show tear production.

I was hoping your update would have said you are experiencing vast improvement in symptoms. Sorry to hear it is not the case. But you are still early in the trial, so don't give up hope just yet. It takes a while to wipe out the immune system, and then for the inflammation to respond to this dramatic change.

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!

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.

Thanks Enbloc. Up here in my northerly world they still use ESR in the doctors surgeries and the hospital mainly relies on CRP. Like yours my ESR can go fairly high - but high for me would be about 62- 80 as has also got down as far as 17 when I take steroids or DMARDs. It was 54 last week and this is medium high for me. I look at these results and try to figure out what might be causung the rise from 32 the previous week. So I'm assuming that the flare of SFN was responsible but also wonder about there being an inflammatory component to my lower GI problems - and the fact that the GTT was also up at 64 in my liver function tests. So I know my normal range and use the patterns to confirm what I'm feeling up here in the north. My CRP is always slightly raised usually sits between 5 and 13 (normal range 0-5) and when I have something like a yeast infection or joint pain it goes up to 13-30. The Pancreatitis and sepsis made it soar up to 160 on five occasions. I think it's a good test for infections but like you it doesn't reflect the SFN flares in the way that the ESR always does

When I'm back near my new hospital they don't monitor me in the same way. The labs don't run the ESR/ send rate - they run a test called the Plasma Viscosity (PV). This is the more sophisticated version of the ESR. It requires better equipment and is sensitive enough to not be altered by factors of gender, age and body weight. They will only run this in the two areas of Scotland I've lived in but as it's more expensive they don't do it as often. It has replaced ESR in many parts of the south of England and London too because of its greater reliability. But like you I know my normal ESR levels so I like it. Some people with inflammatory diseases will feel they are soaring at 30 and they are if there normal is 0-5. So it's like a personal thing that we can use to measure against our pain and inflammation levels. Now I'm being told that it's irrelevant as all it shows is that I have Sjogrens which causes these tests to yield high results got plother reasons ie because of lack of moisture in our blood. I managed to argue that this was nonsense with me because mine fluctuates greatly with pain and comes right down when my disease(s) are better controlled. He looked at the screen and had to admit that I was right so tild hi that I will expect the Cellcept to get my PV and CRP right down if it's effective.

Re the attitude amongst medical community towards Sjogrens in the UK - it's so disappointing and depresssing. So many people aren't allowed to go beyond Plaquenil if they don't have other CTDs or established organ involvement. To me this is waiting too late. But in my own new hospital I'm proving the exception to their previous rule and I'm hoping that if Cellcept works for me then others with primary Sjogrens will also be allowed to try it. Fingers crossed. For me just tolerating it so well is a major breakthrough but I've had 13 months off steroids and 20 months since trying imuran so I'm guessing that it might take a bit longer than it would take for some because of my backlog of symptoms. The tiny nerves that are dead can't be bought to life now and they are many - especially in feet, hands and face - so the likelihood is that I'm stuck with the disequillbrium now. If only they had listened to me sooner - but then moving around hasn't helped.

Oh well it's my birthday today and I'm feeling positive! X

HAPPY BIRTHDAY!!

I agree that so many would benefit if they got more aggressive treatment early into the disease process...vs waiting until the poop hits the fan. That being said, MANY with Sjogren's never develop organ involvement or neuro manifestation...so you don't want to over-treat symptoms that haven't developed yet, either. Hard to call sometimes. But I say if there is any sign of neuro manifestation, this warrants immune suppression or IVIG (if SFN is confirmed). Organ involvement should always get immune suppression right away. So I'm fine with most getting Plaquenil, but ANY sign of this going outside the box of standard Sjogren's...it should be aggressive treatment during that oh so, critical window before damage becomes permanent. And for the most part on Sjogren's World, and local support groups that I have attended...they get this treatment when it's crossed over into organ or neuro issues.

I hope you don't think those nerves are dead, just yet. They haven't even confirmed the SFN...but it certainly seems that you have it. But even though, there is proof that IVIG can increase the fiber density and improve the condition/morphology of said fibers. But your 'window' is fading and they are not giving you the opportunity for that improvement...sad!! That being said, my 'window' closed many years ago...like 20 years!! But I can report improvement in both Poly & SFN pain and even 'some' autonomic dysfunction. Not much autonomic, but still noticeable!! IVIG is the ONLY explanation, as it didn't happen until after I started the higher doses for neuropathy related Sjogren's treatment. It's hard for me to experience something good and know that others (like you) can't have the same expectations...only due to where you live and lack of doctor knowledge and willingness to try. We live in a world where knowledge should be easy to obtain ANYWHERE. There is no excuse for why your doctors can't have access to the same knowledge as our doctors (and vise versa)...not in 2017!! If it was 1960 and there wasn't computer access, etc, I would understand....but not now.

Hope you had a great day on your birthday!!

Let me just add:

I was so happy when you were approved for your trial of Cellcept. I still have hope that you will experience greater improvement with it...as you are still early in the trial and it takes time for the immune system to respond to this type of change and for the inflammation to follow suit.

But I also know we have had many discussions about IVIG...and this is where my hope for you grows deep and where my passion about lack of information (doctors across the globe) fires me up. I know what IVIG has done for me and I know what IVIG has done for many (that I have spoken to) with autoimmune based neuropathy/SFN...and I want that opportunity for you. It may not help, but you should at least be given the opportunity...and it doesn't sound like you will. Hearing you say that your nerves are dead and that you will just have to live with some aspects of the neuropathy isn't fair, and isn't right...not when there is appropriate treatment out there that is widely being used (with success).

I hopes this helps clarify where I was coming from with my last post. You have fought so hard just to get where you are at. I only wish you could fight the system in getting you the BEST treatment out there for neuro/SFN manifestations of Sjogren's...something that can actually improve the condition and density of nerve fibers.

You have MORE knowledge than most of your doctors...just from research. Why can't they do the same??

[QUOTE=en bloc;1233178]Let me just add:

I was so happy when you were approved for your trial of Cellcept. I still have hope that you will experience greater improvement with it...as you are still early in the trial and it takes time for the immune system to respond to this type of change and for the inflammation to follow suit.

But I also know we have had many discussions about IVIG...and this is where my hope for you grows deep and where my passion about lack of information (doctors across the globe) fires me up. I know what IVIG has done for me and I know what IVIG has done for many (that I have spoken to) with autoimmune based neuropathy/SFN...and I want that opportunity for you. It may not help, but you should at least be given the opportunity...and it doesn't sound like you will. Hearing you say that your nerves are dead and that you will just have to live with some aspects of the neuropathy isn't fair, and isn't right...not when there is appropriate treatment out there that is widely being used (with success).

I hopes this helps clarify where I was coming from with my last post. You have fought so hard just to get where you are at. I only wish you could fight the system in getting you the BEST treatment out there for neuro/SFN manifestations of Sjogren's...something that can actually improve the condition and density of nerve fibers.

You have MORE knowledge than most of your doctors...just from research. Why can't they do the same??[/QUOTE

Hi Matt, thank you for info ref eye test and lip biopsy. I'm going to look into optometrists and see if any may be able to do this privately. I didn't think a dentist would do this here in the UK. I will investigate. I'd be worried they wouldn't know what to do with the sample/where it would be analysed.
My ear is usually normal, only slightly raised crp even when the immune activity is rampant.
En Bloc, I believe it is to a great extent down to funding that access to treatment options are limited here. The NHS is increasingly underfunded.

[QUOTE=JoannaP79;1233396]Hi en bloc/MAT,

I'm looking at private ophthalmologists near me. They charge a lot and I will have to pay myself. I am down the go's virtually every week so think I will have to chase this on my own.
To save paying a fortune for a consultation and then having to come back k again for a test could you let me know exactly what the terminology is. Am I right in thinking it's a Rose Bengal Eye Test to determine dryness of the eyes? I won't get to speak to them before I book the appointment so want the secretary to convey this so I can have it all done in the one extortionately priced appointment.

Am I right in thinking dry eyes could be caused by loads of things? And this test just shows dryness as opposed to anything more complex such as mechanisms causing dryness?