Author Topic: False Positive Sjogren's Biopsy?  (Read 422 times)

shakenbake

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False Positive Sjogren's Biopsy?
« on: March 11, 2018, 04:10:21 PM »
Hi guys,

I'm new on this forum and I'm really in need of some help.

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

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. 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. I have pretty severe MGD in my worse eye (only 3 of my bottom glands produce oil)

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? I'm 23 and afraid for what the rest of my life will be.

Linda196

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Re: False Positive Sjogren's Biopsy?
« Reply #1 on: March 12, 2018, 04:28:32 AM »
Generally speaking, if your only symptom is dry eyes, given all of the results you've posted, a not being able to diagnose, I'd probably go with the doctors on this. MGD can cause dry eye or corneal irritation to the same extent as Sjogren's.

The only benefit I could possibly see to a confirmed diagnoses is the possibility of a trial of immunosuppressive drugs, and in my experience they are mostly effective against the systemic symptoms, no the localized ones like sicca.

Less desirable effects of a confirmed diagnosis are the possibility of detrimental effects on health and/or life insurance and financial background checks in the future with the presence of a confirmed Autoimmune disease.
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WhatYouSjo

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Re: False Positive Sjogren's Biopsy?
« Reply #2 on: March 12, 2018, 08:57:29 AM »
You experience sounds similar to my own. I was diagnosed in my early 30s with nearly perfect blood work (no SS-A/B, SED rate and ANA fine) and a negative but unusual salivary gland biopsy (< 1 foci score, but still high). Seronegative SS is often estimated to account for a quarter to a third of all cases, and I personally suspect this to be low, as doctors will often dismiss patients without SS-A/B antibodies, especially for young patients (I personally experienced this). Based on my anecdotal observations and conversations with other SS patients, seronegative diagnoses seem more common in younger patients and males. With that in mind, and a positive lip biopsy, I would consider your Sjogren's Syndrome diagnosis to likely be accurate. Dry eyes were my only symptom for years until other symptoms flared during a stressful period in my life. During that time, I was diagnosed with MGD, but I am now fairly confident that those early dry eye symptoms were caused by early SS.

At the end of the day, there is no treatment that has been approved to treat SS as a systemic disease. Symptomatic treatment for dryness (Restasis, Xiidra, etc.) can be prescribed without a SS diagnosis. Therefore, a diagnosis, at this time, usually makes minimal difference. The most common off-label treatment, Plaquenil/hydroxychloroquine, usually has little effect on symptoms of dryness. The Sjo test offers little value save for your peace of mind, though that may be enough, as I personally know the stress of uncertainty when trying to get a diagnosis. I would also note that stress is the enemy of autoimmune patients, and I recommend doing what you can to calm yourself during this obviously stressful period.

What treatments are you using for your dry eyes? Have you tried Restasis or Xiidra? If you see benefits from those treatments, it could be a sign that autoimmune inflammation is at work. You may also want to try some alternative therapies to see if you experience any symptom relief.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

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SjoGirl

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Re: False Positive Sjogren's Biopsy?
« Reply #3 on: March 14, 2018, 08:57:20 AM »
FYI I went to Hopkins for a second opinion after being diagnosed with Sjs where I live. I had positive SSA and ANA as well as dry eye, dry mouth, dry skin, anemia, lupus rash and more (by the way, all discovered by another clinic in another town which totally missed diagnosing me).

My lip biopsy was normal so Hopkins said I have Undifferentiated Connective Tissue Disease (UDCT).

The lesson? It may or may not be SjS. As was noted, dry eye has many causes including allergies, dry air, spending a lot of time on a computer, etc.

Try if you can not to be too anxious. I know how difficult it is when you feel your body is betraying you, but try to think as positively as possible and try some treatments like eye drop (Bausch and Lomb Soothe are my favorite).
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

markt

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Re: False Positive Sjogren's Biopsy?
« Reply #4 on: March 14, 2018, 10:32:27 AM »
Ive had dry eye for a few years and I eventually got a lip biopsy which was lightly positive (1.17 foci score).

Did they say anything about lymphocyte aggregates, or lymphocytic scialenditis? My foci score was .37, with 1.0/4mm being the magic number per EULAR criteria, but Johns Hopkins confirmed the diagnosis for me using the "whole picture" approach in addition to the biopsy. 

I have heard it stated before that the trouble with the lip-biopsy is that by itself, it can be misleading.  This is because the person taking the sample of labial tissue cannot know exactly where in your inner lip the lymphocytic infiltrate will aggregate (significantly enough to indicate a Sjogrens diagnosis) and create inflammation.     
« Last Edit: March 14, 2018, 10:35:25 AM by markt »