Author Topic: Question regarding lip biopsy results  (Read 2339 times)

A Mom on Spin

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Question regarding lip biopsy results
« on: April 11, 2017, 11:16:58 AM »
Hello all ~

I know I should wait and speak with my doctor about this, but I'm just so confused.  I recently had a lip biopsy done at Hopkins and can view the results via the patient portal.  Does anyone know why the results would not list any focus score at all and only have a diagnosis of "nonspecific chronic sialadentis" instead?

I am absolutely floored.  I have had a diagnosis of Sjogren's for seven years and active sicca symptoms for about three.  I'm ANA and highly SSA positive (or at least I was three years ago - that Hopkins bloodwork is not back) and just had a schirmers score of 3.  I actually had the option of not having the biopsy performed but agreed to get it because I would like to take part in some clinical studies and they usually require biopsy results.

I searched the Internet and found an old thread from here from someone who had gone to Hopkins and received the same result, but it never was resolved or reported back as to what happened with eventual diagnosis.

If anyone could help explain this, PLEASE DO!!!

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Tharrell

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Re: Question regarding lip biopsy results
« Reply #1 on: April 11, 2017, 04:15:29 PM »
The only thing I can share is what my rheumatologist told me, that having been on plaquenil already could have caused my lip biopsy to be negative. Also my smoking would have affected the results as well.
You are going to have to wait what your doctor says, but it won't negate your diagnosis thanks to your strong positive blood work.
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irish

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Re: Question regarding lip biopsy results
« Reply #2 on: April 11, 2017, 05:11:29 PM »
My lip biopsy did not say positive for Sjogrens. It had the nonspecific salingitis listed and also the focal score. At the bottom of the page in small print it said something about being consistent with Sjogrens.

I think I would not panic yet. Talk to the doctor and also suggest that possibly they did not get a patch that contained enough of the salivary glands. Not every lip biopsy ends up with enough tissue. Have you taken prednisone, this could also screw up a biopsy also.

I would go with your symptoms and previous blood work if I was you. Treatment is still the same for your symptoms.

I will tell you that I had blood work for antistriated antibodies and it came back at 15,400. The normal is 0-80 and I was told I did not have Myasthenia gravis but that my blood work was elevated due to my prematurely grey hair. About 4 years later my test was 61,132 and my immunologist said holy cow, you have myasthenia gravis and you have had it for years. He couldn't believe that remark about my grey hair.

I was just going through my medical records and found that report of the 15,400 and at the bottom off the sheet it said "this report and results is consistent with myasthenia gravis". I could not believe that they missed my diagnosis. I am not a happy camper about this. They missed it to begin with and then to see what the report said blew me away.

So, just goes to show you that things do get screwed up and we have to stay on our toes. Good luck with this and keep us updated on how things go. Irish

A Mom on Spin

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Re: Question regarding lip biopsy results
« Reply #3 on: April 12, 2017, 03:56:08 AM »
Thanks Irish and Tharrell,

Yes I am on placquenil and was on low dose prednisone until about three weeks before the biopsy. 

But don't you just get fed up that things so often get screwed up for us?  It's bad enough to feel bad, but then you run into total mess ups and oversights like what happened to you, Irish?  Three months ago I almost died from a very rare reaction to Imuran.  I thought it was my time for things to go right for a change.

I missed a call from the dr's office yesterday afternoon so will call them today and hopefully speak with someone who can explain if this result can be viewed as consistent with Sjogren's.   I'm in a battle with my disability company right now and don't want anything to change my diagnosis or leave me in a squishy area.

Liz
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cccourt1942

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Re: Question regarding lip biopsy results
« Reply #4 on: April 12, 2017, 08:57:47 AM »
I "think"....that means: I DON'T KNOW.

How I understand positive symptoms and thus, dx for SjS.

This is a disease with a cluster of symptoms.  Those of us with SjS understand the necessary physicians to care for each organ/area affected by SjS. The rheumatologist, for example, cannot diagnose eyes.

Therefore: the ENT (who did the lip biopsy---possibly someone in the dental field) can "diagnose" the area of expertise he can treat AND diagnose: Sialadenitis.  I was treated for this for nearly 5 years prior to even inquiring about SjS (with a rheumy).  After said and done, I did (and still do) wonder why the ENT never suggested the possibility.  But...back to my hypothesis:
The ONLY thing the ENT can say is "nonspecific chronic sialadenitis".  Each physician has to use a specific diagnostic code.  An ENT cannot , technically, diagnose SjS.  He CAN diagnose the sialadenitis.

The ophthal dxes the eye prob, the dentist> that area, etc.

The diagnosis is ordinarily left up to a rheumatologist. Those of us on this board know dentists, GPS, PAs (who suggested I had SjS---but couldn't/wouldn't dx), ENTs, Ophthalmologists can "suggest" or "say" but don't do the final dx.

Did your rheumy, who had diagnosed you with SjS, ask you to have the lip biopsy?  Why were you being seen at Hopkins?  I'm confused.  If you have a diagnosis for SjS, do you suspect another autoimmune disease?

Hope this helps you understand what I "think."
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A Mom on Spin

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Re: Question regarding lip biopsy results
« Reply #5 on: April 12, 2017, 10:16:27 AM »
CC

I think I get your reasoning, but wouldn't the pathologist who looked at the glands have given me a focus score if he/she saw those clusters of lymphocytes next to the gland?  They didn't need to diagnose me with Sjogren's.  The report was going to the rheumatologist/neurologist there.

I was being seen at Hopkins - not to receive the diagnosis- but because I wanted to make sure I was getting the best care possible - especially when it came to my neurological symptoms. The two neurologists I had seen in my local area were not up to speed with the neurological manifestations of Sjogren's and I felt that mine were progressing rapidly.  I also was scared after my close call with that Imuran reaction and really wanted to get a thorough work up.  As it turns out, I am now zero-positive for RA as well.  My rheumatologist hadn't tested me for that for three years. 

When you go to the Sjogren's center there for the first time, they rotate you through different specialists and I was automatically scheduled for a lip biopsy.  Because I already had a firm diagnosis   I could have opted not to do it.  I only agreed to do it because I wanted to take part in future clinical trials and had no doubt of the outcome - or so I thought!

I'll let you know when I find out more.

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

A Mom on Spin

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Re: Question regarding lip biopsy results
« Reply #6 on: April 16, 2017, 12:32:16 PM »
Just wanted to complete the circle here:

When I spoke with the dr at Hopkins about the results of my lip biopsy, it seems that it gave him no cause to even think for a moment that my Sjogren's diagnosis was not correct.  In fact, based on the extensive bloodwork he ran, he added RA and lupus as well.

So much for the lip biopsy being the end all and be all for diagnosis.  Obviously my SSA and schmirer's score trump the biopsy.  I'm sure that no two individuals are the same.

Just thought it was interesting to note. 

Liz

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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

MAT51

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Re: Question regarding lip biopsy results
« Reply #7 on: April 16, 2017, 12:52:01 PM »
Thanks Irish and Tharrell,

Yes I am on placquenil and was on low dose prednisone until about three weeks before the biopsy. 

But don't you just get fed up that things so often get screwed up for us?  It's bad enough to feel bad, but then you run into total mess ups and oversights like what happened to you, Irish?  Three months ago I almost died from a very rare reaction to Imuran.  I thought it was my time for things to go right for a change.

I missed a call from the dr's office yesterday afternoon so will call them today and hopefully speak with someone who can explain if this result can be viewed as consistent with Sjogren's.   I'm in a battle with my disability company right now and don't want anything to change my diagnosis or leave me in a squishy area.

Liz

Sorry but I can't even believe they took a lip biopsy from you if your blood work was positive and you have been on Plaquenil and steroids - which are known it skew the results of this test. I wouldn't pay too much heed it to be honest - it probably would have been 100% positive like mine if you hadn't been taking these meds.
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irish

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Re: Question regarding lip biopsy results
« Reply #8 on: April 16, 2017, 06:47:22 PM »
I was thinking the same thing about the lip biopsy---you had the positive blood work so seems sort of like a waste of time and money to do the lip biopsy.

I had the lip biopsy done sort of almost as an afterthought and it surprised the heck out of all my docs. Never had any positive blood work over the years. I didn't have any bloodwork until 2 years later when I got into a Sjogrens survery group at the U of MN. They did the blood work but I did not have to have the lip biopsy. Ended up with positive ANA and ssa-ssb plus the dental testing showed extreme dryness and eye testing was also dryness but looking good with Restasis treatment.

With all that being said, I would think that either the lip biopsy or the positive blood work should do the trick for us except for those that have the seronegative. Actually, autoimmune diagnosis really is a crapshoot. We expend all time, money and tears trying to find out what is pulling the life out of us and just a mere negative test one way or another can put us over the edge. And not always in the right way.

We all just need to hang in there and keep plugging along cause eventually there is an answer. Took me 39 years to get my answer. Good luck to all.irish

A Mom on Spin

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Re: Question regarding lip biopsy results
« Reply #9 on: April 17, 2017, 06:14:36 AM »
It was my decision to have the lip biopsy done.  The dr would certainly have done without, but I want (or wanted) to participate in studies and clinical trials which almost always require a lip biopsy.  I then figured that it was best to do it at Hopkins to make sure it was done correctly. 

I know it backfired on me, but I guess we all live and learn.
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MAT51

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Re: Question regarding lip biopsy results
« Reply #10 on: April 17, 2017, 11:01:33 AM »
I didn't realise clinical trials rely on a lip biopsy? So what about the many who have been taking steroids or DMARDS or even Rituximab for their seroposotive Sjögren's then? I'm very lip biopsy positive but only ANA positive so essentially seronegative. Would I be eligible even though my Sjögren's could still be either primary or secondary? Or is it essential to be both? I can't see that they would get many candidates at all if they require both?
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A Mom on Spin

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Re: Question regarding lip biopsy results
« Reply #11 on: April 17, 2017, 04:07:22 PM »
I am certainly no expert on this topic.  I only know that I enrolled myself in a study at the NIH a few years ago.  Despite my positive SSA they were going to require a lip biopsy.  I chickened out at the last minute and have always regretted it. 

I know that some studies and clinical trials require that you be off DMARDS for six months prior to the start of the trial. (Placquenil, I believe, is an exception)   Since I had been off all DMARDS since my bout with septic shock from Imuran since January, I thought this was a good time to explore enrolling in one again.  That's why I opted for the lip biopsy.

Now, with the discovery of RA and lupus, I may no longer be a candidate and am going to start Rituxan sometime soon.

Please don't take my word as gospel truth.  Like I said, I'm only speaking of my experience.

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

bluegardenia

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Re: Question regarding lip biopsy results
« Reply #12 on: April 18, 2017, 02:16:22 PM »
i had exactly the same result for my lips biopsy, no score so some of my many doctors do not believe i have a real(!) sjogrem but just connettivitis
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