False Positive Sjögren Biopsy?

[shakenbake]

Hi guys,

I know I’ve been posting pretty frequently but I was wondering if anyone has any insights on potentially being misdiagnosed with sjogrens.

Ive had dry eye for a few years and I eventually got a lip biopsy which was lightly positive (1.17 foci score. 1 is considered positive).

Since then I have assumed I have sjogrens. I have been to two rheumatologists to attempt to confirm the diagnosis. The first one is convinced I don’t have it and ignored the dry eye complaint. The second one I went to was impressively thorough. All of my blood work was negative( All of it. Not just SSA and SSB but ANA and sed rates etc). There is no indication of any heightened immune activity of any sort in my blood. So she ordered an MRI to see if there was any parotid gland swelling or lymphocytic infiltration. There was none. My lacrimal glands also apparently looked normal.

To confuse things further, I went to a different ophthalmologist who did a Schirmers test ( my primary doctor only uses tear osmolarity ). My Schirmers was 30 mm in both eyes. However I have 4 punctual plugs which I thought would confuse the results. She said that it can somewhat but that even with plugs sjogrens patients usually have much lower scores.

My aqueous tear production is definitely less than it used to be, I’'m always uncomfortable and my biopsy was positive. I have always had mild dry mouth even before the eye issues, but I’'ve asked dentists who have told me my salivary production is normal, and I haven't had any dental issues. Do I have Sjogrens? My rheumatologist suggested I go to the SS center at Johns Hopkins to get a definitive diagnosis.

Today I am going to get the Sjo test even though my rheum recommended against it because it hasn’t really been accepted by the scientific community. I’m worried because it’s specificity is only around 80%. Which means 20% of people without sjogrens test positive with their panel but more data points will be helpful.

Is anyone else in a similar situation?

[Guest]

I was told by one person I definitely had an autoimmume disorder due to reduced aqueous production and a weak positive for the ANA. I get a sore throat at night but have no problems in the day. With one set of plugs my schirmers is 30 too so the last person I saw thought no way could I have sjogrens. I did however have lasik so thought the lower aqueous production might be due to reduced corneal sensitivity. I'm trying out a prokera lens right now to help the nerves regrow as there is some limited evidence they can help. Also interested to hear about any link between sjogrens and the schirmer's test. I understood with sjogrens it was usually below 10.

[shakenbake]

I'm a firm believer in the idea that the simplest solution is usually the answer. If you've had LASIK I'd think that's the most straightforward reason for your aqueous production being low, but I am not an expert.

I've had 3 amniotic membranes in each eye. Note that they were not the Prokera. My ophthalmologist uses AmnioGraft which I am not convinced works as well. They didn't help me much; however I don't think they were addressing my underlying problem, so they will most likely help you more. I would be very interested in finding a doctor who could quantitatively measure the health of my corneal nerves.

I'm very confused by the clinical definition of aqueous dry eye being less than roughly 10-15 mm on a Schirmer's test. If I'm in so much discomfort now I have to imagine that before all of this my Schirmer's must have been 40+.

[Guest]

Dry eye is just so confusing! I had no problems after lasik for four years so that's why the one guy thought it was an autoimmume problem and couldn't be lasik damage.

I'm still convinced my main problem is low oil production though a keratograph said both. In the summer I overused the computer and my tbut went from over ten to zero in six weeks. I had no problems at all before that and constant debilitating pain since.

I asked about getting much corneal nerves looked at but my op didn't think they were very accurate. Maybe that's just because I'm in the UK. Everything seems years behind the US here!

[shakenbake]

I think if the corneal nerve measurements weren’t accurate there wouldn’t be a way to gauge the effectiveness of something like Prokera.

Is a keratograph like a LipiView?

Also update: the Sjo test is not covered by insurance and it costs around 650 at quest.

[shakenbake]

I should get my results back tomorrow. I don't know if I even want them back. Maybe not knowing is better. I'm unbelievably afraid. My life is falling apart. I think I could deal with the dryness if it weren't caused by a more serious autoimmune condition. But if I have Sjogren's I think I'll have to accept the fact I won't get better and that I'll have to leave my job and my boyfriend who I love more than anything.

[farmgirl]

Seriously, if you don't have more symptoms than that and you do in fact have Sjogrens (which I seriously doubt), you then don't probably have the secondary Sjogrens which is much worse than the primary type.

I have primary and honestly, if my eyes didn't bother me I would hardly know I have it. I need to drink water in the night when I wake up (which is on average 3 times) but apart from that I only have to make sure that I have water with me if I hike because my throat will dry out to the point that I can't swallow and that is not fun. Otherwise I wouldn't know I had it. The Dr wanted to put me on low dose steroids but I refused cause I didn't want to swap one problem for another....I have never regretted it cause in the 8 years that I have know I have the condition it has not gotten any worse.

There is absolutely no reason to believe that you will have to leave your job or you boyfriend unless your job involves working all day on the computer. If your eyes are bad you will probably end up leaving it anyhow. I can't imagine why you think you would have to leave your boyfriend???

[shakenbake]

Hey farmgirl! Thanks for responding. I’m curious why you doubt I have Sjogrens. Because of the blood tests?

We’re your blood tests positive? I’ve heard that sjogrens patients often have blood tests start negative and turn positive and the dryness comes first. But I would then expect my MRI to have shown issues with my exocrine glands. I usually have a mild dry throat in the morning but that’s about it for mouth symptoms. I’ve never had dental issues. I do take evoxac because I’m hoping it will help my eyes. I don’t notice when I miss a dose though so I question if it helps.

Im a software engineer. So yes I work on the computer a lot. So is my boyfriend. It’s kind of an integral part of our relationship. We had a lot of plans for the future and I’m becoming too crippled for him to think I can accomplish them. I’d say if I have to leave work he goes shortly after. We’re young and there’s no reason for him to stay with someone who’s sick.

Im fighting this incredibly hard but I don’t know if I can win. Especially if it’s an underlying systemic problem.

the new ophthalmologist (Dr. Cremers) says I have a serious oil production problem and a tbut of 2 and 8. She showed me video of her trying to express my glands and only 3 on my bottom left lid were producing oil. I’d like to believe MGD is my isssue but I feel like I wouldn’t need 4 plugs to be comfortable If my lacrimal glands were working.

I know all off my problems were caused by the Mirena IUD and the sjogrens specialist at the Boston foundation for sight says that birth control can trigger Sjogrens.

I have an an alternate theory that the Mirena damaged a lot of tissue/caused some hormonal change in me that mimics what menopausal women go through with dry eye.

Ive heard the biopsy is the gold standard and that if it’s positive you definitely have SS. I’m just very confused at the moment. Every diagnostic test except the biopsy says I don’t have it but then why are my eyes so dry?

I’m worried that I’m only doing okay because I’ve only had it for 2 and a half years and in 5 or 6 I’ll probably have it full blown with all my blood tests being positive. I don’t know if that’s me believing the worst or being realistic. No one can give me any answers.

It’s encouraging to know that in 8 years you didn’t get worse. How old are you? For me in 8 years I’ll only be 32. So I’m sure by the time I’m 40 I’ll be unbelievably disabled.

Im supposed to have the rest of my life ahead of me and I feel like it was stolen.

[farmgirl]

HI Shakenbake: I doubt it because your blood tests were negative (not surprising as they often are, as were mine) , your MRI was negative, and your biopsy weakly positive which to me is just a fancy word for maybe, we don't know for sure. I am not sure what the results of your last tests were but if they are negative you can quit worrying. Your rhumey thinks you don't and Dr. Cremers says you have a serious oil production problem. Dry eye is a very complex and poorly understood condition so there could be many reasons your eyes are dry. I am guessing that the main culprit is overuse of computers. Be thankful you are seeing Dr Cremers because I believe she is one of the best.

I have to have 4 plugs to be comfortable but that is also because most Sjogren's sufferers also have some MGD. I have been told I have some drop out but that I still have producing glands. That was based on a cursory expression under a slit lamp. The reason that you need the plugs is that the lack of oils allows what tears you do produce to evaporate too quickly. If you had a schirmers of 30 you have plenty of tears compared to my 0-1.

In the 8 years post diagnosis I haven't gotten worse, I have in fact gotten considerably better. Not because the Sjogren's improved but rather I have found things that helped gratis of this forum and am still learning. Like Pythonidler said in her wise post, it you think you have tried everything, you haven't.

This is a bit personal and I only mention it because you feel that if you can no longer work on computers your relationship will be over. I am pretty pragmatic and In the world according to farmgirl, if you have a serious loving relationship it needs to be able to stand the test of time. If you do have Sjogrens or if your dry eye, whatever the cause, impedes you from continuing to work on computers, and that is enough to send your relationship south, then in my opinion it was not really well grounded in the first place and the sooner you find out the better. I guess this will be the litmus test. I wish you luck.

PS, since you asked I am old enough to be retired so I am also old enough to have the post menopausal lack of mucous membrane fluids.

[shakenbake]

Update: Sjo test was negative. So confusing since it’s supposed to pick up early sjogrens as well.

I went to a different doctor and tested positive for CMV and a bacterial infection. Not sure if this is relevant since many people have antibodies to these sorts of things.

Sending biopsy slides to a second pathologist for analysis.

[MGD1701]

Thanks for sharing. Maybe you dont have Sjo.
Have you looked into other issues, hormone? comestic? partial blinking? diet? medication?
if eyes are closed when sleep? Vit. D, A, Zinc? CCH?

How to test CMV and a bacterial infection? Did dr recommend treatments for these then? Thanks!

[farmgirl]

Update: Sjo test was negative. So confusing since it’s supposed to pick up early sjogrens as well.

Hi shakenbake, thanks for the update, I am so happy to hear that you don't have Sjogrens, that must be a huge relief to you. Now you still have the problem of finding out why your eyes bother you so much but at least that is one less thing you have to worry about....what is CMV?

[MGD1701]

- - - - - - - - -

[shakenbake]

I still have sjogrens. The biomarkers just aren’t positive yet. CMV is just a virus like Epstein bar that lots of people have had.

I havd looked at all other possible causes. It is definitely sjogrens.

[farmgirl]

I doubt it.

#1Your Rheumy doesn't think you have it because your foci score at 1.17 is too low and although a value 1,0 or higher may indicate Sjögren's syndrome, it is not diagnostic. Your rhumy said that a full blown Sjogrens patient can have a score of 4+
#2 Your eye doc thinks you don't have it because your 30 mm Schirmers in both eyes is too high (less than 10 is indicative of aqueous deficiency anything above is considered normal)
#3Your dentist doesn't think you have it because your salivary production is normal.
#4Your MRI was negative for any parotid gland swelling or lymphocytic infiltration. Your lacrimal glands also looked normal..
#5 The Sjo test which is supposed to be 92% accurate was also negative.

If those were my test results I would be dancing for joy!!