Author Topic: Botched Lip Biopsy but Positive Response to Plaquenil  (Read 26697 times)

malew/sjogrens

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #30 on: February 18, 2010, 04:47:45 PM »
Not sure where you guys get your information, but a positive lip biopsy means that you definitely have Sjogren's. My Rheumatologist and ENT both confirmed this. ENT advised that results are usually 95% accurate as I asked if there were any false positives. If biopsy shows scar tissue and lymphocytes it is a positive Sjogren's dx. My biopsy was also positive. WEB MD and the Sjogrens.org web site indicate that positive lip biopsy means Sjogren's.

inga

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #31 on: February 18, 2010, 05:18:30 PM »
A lip biopsy can be + in scleroderma, in amyloidosis, in sarcoidosis and many other conditions.  There is little 'definitive' in autoimmune disease.  Any insult to the labial salivary gland can produce inflammation, including the use of drying meds.  One has to meet a certain number of criteria for diagnosis.

Scottietottie

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #32 on: February 18, 2010, 05:45:03 PM »
Hi  :)

I've never had a lip biopsy and have no intention of ever getting one. My bloodwork has never been positive for Sjogren's but has been mildly positive for lupus and is positive for Hashimoto's thyroidititis. My endocrinologist referred me to a rheumatologist because she ordered blood tests when I asked if Hashimoto's could make my teeth decay and make my eyes itchy.

My rheumatologist said that though my blood suggested lupus -allthe symptoms indicated Sjogren's. He dxd a Lupus/Sjogren's overlap and has dxd me on that basis. It can happen - without every blood test being definitive. In fact - having been on Plaquenil - my blood tests are now normal. i'm still on Plaquenil, still have dry eyes, joint pain and a dry mouth and my rheumy still goes with the same dx.

Take care - Scottie  :)
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inga

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #33 on: February 18, 2010, 06:07:03 PM »
Lip biopsy reports generally report results as 'consistent with Sjogren's Syndrome'.  They do not state that the patient has SjS.  As this article states, there are many reasons that the lip biopsy can have lymphocytic infiltration.  What is important here is that the CORRECT diagnosis is arrived at, not just ANY diagnosis.  One does not want to end up on immunosuppressives because the lip biopsy was done while on anticholinergic meds....which are very commonly prescribed.

 Additionally, there is some evidence that neuropathy can interfere with normal signals to the labial salivary glands making them fail to produce and subject to drying, which causes inflammation or fibrosis.   The same lip biopsy read by one pathologist or rheum could be read by another with differing results.  It is subjectively read....altho it is an 'objective' test.

If one believes that the lip biopsy will yield answers, then by all means, get it.  It isn't brain surgery.

Doctors generally do diagnostics to guide them in diagnosis, not to back up a premise.  It is best to neutrally gather data, and then come to a conclusion.

I am not on PLaquinel....I am on different treatment.  Plaquenil wouldn't do me any good.
What I get for treatment would not have been prescribed on the basis of a + lip biopsy, and that is a good thing, because there is risk.  I  hope every one find the correct answer for their diagnosis.

Below are the criteria.

http://adisonline.com/aging/Fulltext/2008/25010/Sjogren_s_Syndrome__Diagnosis_and_Therapeutic.3.aspx


"Classification criteria can aid the clinician in diagnosing a particular disorder, especially in rheumatology, where patients can present with a wide variety of symptoms. However, classification criteria can also, at times, misclassify some patients, especially when they present early in the course of the illness. Nonetheless, classification criteria are useful in the setting of a clinical trial where standardization of a diagnosis is crucial for comparisons between different trials and institutions.
A number of different sets of diagnostic criteria have been developed for SS since 1975. Most of these criteria include a combination of subjective and objective evaluations. Over the years, the Copenhagen[10] and European[11] criteria have been widely used. It has been argued that the European criteria lacked specificity as lip biopsy findings or positive serological findings (anti-Ro or anti-La antibodies) were not prerequisites in these classification criteria. Currently, the most widely accepted criteria for a diagnosis of SS are the American-European criteria, which were proposed by the American-European Consensus Group in 2002.[12] These criteria consist of six features: ocular symptoms (dry eyes), oral symptoms (dry mouth), ocular signs (at least one positive test result), positive histopathological findings (focal lymphocytic sialoadenitis), objective evidence of salivary gland involvement and presence of serum autoantibodies (anti-Ro and/or anti-La).
A patient is defined as having primary SS if:
* four of the six features are present as long as there are confirmatory histopathological labial gland biopsy findings or positive serology with anti-Ro or anti-La antibodies;
* three of the four objective criteria are present.


The sensitivity and specificity for a diagnosis of primary SS using these criteria are 96% and 94%, respectively.[12]
Secondary SS is defined if a patient has keratoconjunctivitis sicca or decreased saliva production plus any two of the following features: objective evidence of dry eyes or mouth or positive histopathology in the setting of an associated connective tissue disease.
The American-European Consensus Group has also listed a number of exclusion criteria, including previous head and neck radiation treatment, hepatitis C virus infection, pre-existing lymphoma, sarcoidosis, graft-versus-host disease, AIDS and anticholinergic drug use.

Linda196

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #34 on: February 18, 2010, 07:13:20 PM »
I had pre-existing sarcoidosis when I presented with SjS symptoms. All my blood work is positive, but I still had a lip biopsy to clarify the situation because of that line in the criteria that states sarc is exclusion criteria.

My biopsy was specifically to identify the type of white cell that had infiltrated the salivary glands...had it been the same granulocytes that have been present in my other tissues as a result of sarc, we would have stuck with that as DX, but because the leucocytes were different, I was DXd with SjS in addition to sarcoidosis, so not every case fits the "guidelines".
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malew/sjogrens

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #35 on: February 18, 2010, 10:24:52 PM »
That is why you go to credible and qualified physicians instead of self diagnosing. You can worry yourself sick by researching and researching what is wrong with you. Let the doctors figure it out.

http://www.medicinenet.com/sjogrens_syndrome/article.htm#4howis

The diagnosis is strongly supported by the abnormal findings of a biopsy of salivary-gland tissue.

The glands of the lower lip are often used to obtain a biopsy sample the salivary-gland tissue in the diagnosis of Sjogren's syndrome. The lower lip salivary-gland biopsy procedure is easily performed under local anesthesia with the surgeon making a tiny incision on the inner part of the lower lip to expose and remove a sample of the tiny salivary glands within.

This was the final procedure that confirmed my dx. It was the last piece of the puzzle.

Chronic dry eyes
Occasional dry mouth
joint pain
fatigue
burning and tingling in arms and legs
Positive ANA
Slightly above normal SS-A
Positive Rose Bengal test
and then Positive lip biopsy.







eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #36 on: February 18, 2010, 10:34:41 PM »
Male w/Sjogrens---If you're taking meds for SSJ (ie methotrexate, plaquenil, prednisone etc) are your blood levels returning to normal?  If so, and in many cases they do, does that mean you no longer you have SS?  I'm just curious about your observation.  Best, Lucy

malew/sjogrens

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #37 on: February 18, 2010, 10:54:44 PM »
Just diagnosed in 10/2009. Started Plaquenil on 11/6/09 and finally the joint pain and fatigue are better as of New Years day. I have not had any recent blood tests since I went through a battery of them to help with my dx. I see the Rheumy in April. I am not sure how often he will need to do blood tests.

My Rheumy said there is no cure for Sjogren's (like most, if not all AI diseases) and it does not go into remission. He said what some people think of as remission, just means that they are not having flares and are managing their disease. He said that Plaquenil helps with joint pain and fatigue but not the dry eyes or mouth. He said that I will have this the rest of my life.

eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #38 on: February 18, 2010, 11:09:06 PM »
Male- that is pretty much my understanding.  I have to have bloodwork done every 8 weeks or so.  I'm 3 years on this, with them adding Fibromyalgia about 6 months ago.  Six month after my SJS diagnosis, I had a b. cancer diagnosis.  I've just been full of dx for the past 3 years. 

Meds have definitely helped the SJS.  My mail problem remaining is the fatigue and I believe it's caused by the radiation as much as the other stuff.  I've lost 3 years lying on the couch watching the world go by.  Am looking forward to spring as I live in a northern state.  Good luck.

Billydude

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #39 on: February 19, 2010, 11:46:02 AM »
eye...the fatique is not necessarity from the radiation.  I think many of us feel overwhelming fatique.   I'm sorry you had to deal with the breast cancer on top of everything else.

irish

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #40 on: February 19, 2010, 03:02:56 PM »
This has been a very interesting thread. It has brought to focus the fact that we are all different and all the symptoms and blood work we have is different. It is such a complicated thing to need all the medical care to get a diagnosis. The thing with the AI is that is really is not set in stone. A specialist is needed to diagnose and to prescribe the needed medications.

Even doctors go to doctors when they get sick. They know that they need someone who knows what is going on and has a discerning eye. It takes a lot of info and good subjective/objective information to come up with a diagnosis and it is best done by someone looking in. When we are trying to self diagnose it is so easy to just pigeon hole symptoms and come up with what we think it is without the knowledge to rule out what it isn't. That is the important ability of a trained doctor. It may seem so easy to diagnose sjogrens in a person with autoimmune disease but the other possibilities are endless. The use of a lip biopsy is just a very small item in this dilemna.Irish ;D

Butterfly

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #41 on: February 19, 2010, 07:33:35 PM »
Woolygimp, I recently had a lip biopsy to confirm Sjogren's. My previous doctor had been treating me for symptoms of Sjogren's and when I switched doctors he recommended the lip biopsy. I saw dentist at a local salivary clinic. She is head of the department and is a professor there. You may want to do some research in finding a physician that is qualified and has performed numerous lip biopsies successfully. I had to be off the plaquenil and saligen for 3 months before she would do the lip biopsy. She said it could affect the results. It was the longest 3 months of my life. I was so dry, exhausted, and my joints were so painful. I wish my first doctor had requested the lip biopsy back when she first thought I had Sjogren's. It would have saved me some major headaches with treatment and disability pay. My results came back positive and I resumed both meds. Now I have a confirmed diagnosis. If you ever file for disability because of your condition you will need a diagnosis by a doctor. I agree with the others-you need to be careful. You need specialized eye tests every 6 months to detect complications sometimes seen with plaquenil use. I hope you get the answers you need.

eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #42 on: February 19, 2010, 08:58:04 PM »
Quote
If you ever file for disability because of your condition you will need a diagnosis by a doctor. I agree with the others-you need to be careful. 

Butterfly, I'm not arguing with you but want to bring out a couple of things to ponder.  I'm too old and sick to argue, most of the time.  Especially on the computer as it's hard to see.

A person could be filing for disability because they were very sick and still not have a positive lip biopsy.  Suppose they didn't know (and/or their docs) didn't know they had Sjogrens?  The subject of a lip biopsy would not come up in that situation.  The person, however, could file disability if he so chose.  So, I don't think that statment rings true, even if one does have Sjs and that positive bloodwork would work as a positive.  There is sure no guarantee on disability whether you have Sjs or not. 

I filed for disability before I knew I had Sjogrens, and just with my eye problems, although they were very bad because of surgeries and I got disability on first try.  Just a few weeks later I finally had some answers.  I'd had Lasik surgery and my eyes became dry and painful with declining vision.  No time in seeing docs around the country did any of the ophths bring up possible Sjogrens.  It was me who thought of it.  I got disability even though my Lasik surgeon said to me straight-faced "you'll never get it."  Well, I did.  No attorney, no turndown.  Lucy

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #43 on: February 19, 2010, 11:02:30 PM »
WOW!

This has been some kinda thread!

Well I am going to attempt to address this from the point of view of yet another legally blind person. Believe me sight next to you life is one thing you don't want to lose.

What could be worst than going blind and ending up with your body constantly wrecked in pain? Knowing you did something to cause it! I too say be careful with this it could lead to more problems than you may be able to tolerate. and I don't mean the occasional pains and discomforts, there are pains that are none stop, alot of them caused by medicines that someone should not have been using. In other words we really have to be careful with ALL medicines, especially those not prescribed by a doctor that have considered many things before px. My doctor will not even consider giving me this med. because of my eye disease, how do you know you don't have a eye disease of some kind that this med. will trigger in some way if you have not been to an eye doctor lately, many of them develope from one visit to another?

I would suggest you find a doctor that will treat your symptoms rather than leaving you to suffer in the wait. Most of us know and understand hurting so bad you are desperate, we can cosider Micheal Jackson.

Now are you sayig your skin is so dry that vaseline dont work? Try wetting your skin first then applyig a good coat, you may have to reapply later in the day, BUT if your skin is sucking up VASELINE faster than you can apply it then you really do need to go see a derm. That don't sound like SJS! And it sure don't sound like good ole vaseline!!!!!!

In some countries that lip thing, (which I did not have, SJS always shows up in my bloodwork with no doubts) is not even done anymore. It like most things is not always proof positive in all cases to be correct.



eyeamdry

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #44 on: February 19, 2010, 11:14:46 PM »
Bernice, most people have never heard of your eye disease, even more than have never heard of Sjogrens!  I know what it is because of my situation with Lasik surgery and then cataract surgery.  Your disease is very. very serious and also quite rare.  I'm glad things are going smoothly for you at this time.  Even with my butchered, zero schirmer's eyes, bad vision--I've been on Plaq for 3 years ad my eyes are the same--junk.  LOL.  I do get them checked at least every 6 months though.

Yeah, you folks with regular eyes don't take them for granted.  Also stay away from Lasik/PRK surgeons.  Sometimes surgery is needed but in most cases (mine) it was a want.  Bernice's keratoconus is something when the shape of the eye becomes cone shaped.  Some people get this after Lasik.  It requires very special care and as I said is very worrysome.  I've had to do all the research on my eye problems because the butcher eye surgeons denied there was any problems, just like the rheumys. (some)