Sjogren's Syndrome Lip Biopsy

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quahog
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Date Joined Sep 2005
Total Posts : 535
   Posted 12/14/2008 3:03 AM (GMT -6)   
I recently had a lower lip biopsy to rule out Sjogren's Syndrome. I am awaiting the results


It's been about two days and there is swelling as well as pain and the middle part of my lower lip is slightly numb. Supposedly this is normal but I'm curious to know in general terms about how long it will take for a procedure such as this to heal.

I know it's too soon to say but I'm concerned about possible nerve damage.


On another note, It's been awhile since I've posted and I wanted to let those who are familiar with me that I'm still alive and kicking, albeit a bit worse for wear at the moment tongue

I hope that you are experiencing little to no pain and that life is good

Take care

Post Edited (quahog) : 12/14/2008 2:07:54 AM (GMT-7)


skeye
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Date Joined Mar 2008
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   Posted 12/14/2008 12:00 PM (GMT -6)   
Hi quahog,

I don't believe that we've met before. Just to introduce myself, I'm skeye & I have severe eye pain from a traumatic injury two years ago. I'm sorry that we both have to be here because of pain, but it is nice to meet you.

I saw something on Discovery Health a while back about Sjogren's. They mentioned how the lip biopsy was one of the most painful procedures. I'm so sorry that you go through it! I hope that your lip feels better soon, and that the test brings you the answers you were looking for. I wish I could be of more help!

Skeye

quahog
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Date Joined Sep 2005
Total Posts : 535
   Posted 12/14/2008 8:26 PM (GMT -6)   
Thank you for your reply Skeye.

And it's not at all hard to believe that the Discovery Health Channel would say that this procedure is incredibly painful.

Day three and more of the swelling has subsided but if I move my mouth a certain way or twitch my chin I'm overcome with pain.

Now, if that wasn't bad enough I'm also dealing with pain from my Wisdom teeth, I never had them out when I was younger and now I am regretting that decision. I had planned on speaking with an oral surgeon but because of the Biopsy I'm going to have to wait until it heals.

On another note, I guess I must have been gone for too long because I don't recognize that many posters and they certainly haven't responded to my post.

I'm a bit put off by this. shakehead One would think people more people would introduce themselves.

Oh Well

skeye
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Date Joined Mar 2008
Total Posts : 2840
   Posted 12/14/2008 9:01 PM (GMT -6)   
Hi Quahog,

It is a weekend, and I've noticed that people don't post as much on the weekends, so maybe more people will respond tomorrow. It's also a busy time of year with the holidays approaching.

I'm so sorry that your wisdom teeth are acting up too! What poor timing! It sounds like lots of liquids for you. I hope your lip starts feeling better really soon! I can't imagine mouth pain because you use your mouth for so much - talking, eating, expressing emotion, etc. I have a lot of sympathy for you! Keep some ice on it & maybe that will numb it enough that it helps with the pain temporarily, in addition to the swelling. Hang in there!

Skeye

TroubleMaker
Regular Member


Date Joined Mar 2007
Total Posts : 119
   Posted 12/15/2008 5:25 PM (GMT -6)   

Hi, it's been a while since I've been on here, but my mother has Sjogren's.  She was diagonised (sp, sorry not real good at spelling) prolly 10 to 15 years ago.  She has more of the dryness of her eyes and mouth, and the fatigue.  I wish you all the luck and hope they hurry and are able to get you some more information.

 

Wanda Sue


Pain pain go away and never darken my door step again :)
 
 


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 1/19/2009 2:50 PM (GMT -6)   

Just had my biopsy today. This is my second, since they didn't remove enough the last time round. I have to disagree on the pain thing. I find this no worse then going to the dentist. I had some minor pain about 4 hours after the biopsy. It went away with a regular pain killer and I haven't been in any pain after that worn off. I am eating normaly. Just need to be a bit carefull of the stitches. 

Only negative thing I can think of was the last time I did it. I lost a little feeling in my lip. Not totally numb, just feel less. Other then that this is no big deal. At least for me...


IBD?? - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
 


angelrn863
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/26/2009 6:19 PM (GMT -6)   
I have been going through testing for 2 years now, with still no diagnosis. I was told I had MS , then Lupus, then wegners granulamatosis, now sjogrens. My neurologist is sending me to a dermatologist for a lip biopsy. One is this the doctor who did your biopsy and two I am going on vacation 3 days after my appointment. should I reschedule? Thanks for any advice

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 261
   Posted 1/27/2009 3:09 AM (GMT 0)   

Hey Glenn, ouch on the lip.  I had a biopsy done(for cancer) and first I couldn't stop the dang thing from bleeding. They had me stay about an hour to make sure it stopped and then as soon as I started driving, it started to bleed again and then did it off and on for days.  It was very painful. I had a fellow doing the biopsy and she wasn't very good. The novacaine injections hurt like crazy and she didn't get the area all numb. Her hands were shaking and I told her just to take the dang biopsy and don't stop for more injections.  She thought I was crazy but one swift cut vs more shots than the cut anyway.

I certainly don't hope you have sjogren's but I know you have been searching for a diagnosis. Auto-immune's are no fun.

 

Take care

Melissa


lucysgd
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Date Joined Jun 2008
Total Posts : 653
   Posted 6/15/2009 8:54 PM (GMT -6)   

Just wanted to say that I have also had a lip biopsy and did not find it to be unduly painful or difficult during or afterward.  In fact, my stitches came out within a couple hours of the procedure, and it was really no worse than a small canker sore feels.  However, they only took 2 samples, and I read afterward that four is the minimum, so perhaps the doctor was not as aggressive as some.   At any rate, my rheumy's response was that it could be a false negative.  She continues to test and monitor symptoms.  So much for a definitive answer! (Which is what I was hoping for).   Pia Sava, sounds like we had similar experiences.   Hope your results this time help figure things out!

Lucy 

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 6/15/2009 9:12 PM (GMT -6)   
Also remember that a lot of it depends on the doctor. Better to find one that has a lot of lip biopsies under his/her belt. I have heard both sides, not bad to terrible. I have not had one, doc said not required since I have Sjogren's antibodies however I have heard that the lip biopsy is the gold standard criteria for Sjogren's (if no blood markers).
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


quahog
Veteran Member


Date Joined Sep 2005
Total Posts : 535
   Posted 7/1/2009 4:02 PM (GMT -6)   
Hi all,

It's been quite sometime since I updated everyone on my outcome.

First the good news is my lip biopsy healed within a few weeks and a month later I had no more pain from it but let me tell you I would not have this done again.

Now for the bad news my biopsy was inconclusive. The surgeon did not take enough salivary glands. My PCP asked if I wanted to undergo another biopsy I literally laughed at him and told him he was NUTS!

I do have some partial numbness in the center of my lower lip and seeing as six months have gone by it's doubtful if it will ever go away. Fortunately it isn't all that noticeable.

So as for a diagnosis I'm still at square one. My PCP and a new Neurologist I saw are saying it's Fibromyalgia but to be truthful I don't agree with them.

Later

Glenn

schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 9/7/2009 1:13 PM (GMT -6)   
HI, I'm a new member to this site. Looking for more info on teh results of the Lip Biopsy. I had mine a week ago, with minimal discomfort, ttok several days to eat normal food. The results are back foci of 4, so it's very positive. Does anyone know if it's bad if the score is high? Or just it means it was positive in 4 of the 6 samples they took?
I was always told that I had SLE with raynaud's and sjogrens. But, my main complaints have always been: fatigue, dry mucous membranes (eyes, mouth, nose, vagina), frequent infections, low white count, trouble breating, low heart rate. Now they think the sjogren's is affecting my lungs/heart (restricting movement) Has anyone experienced this?
I wear goggle glasses, they help more than restasis. Almost every tooth has a cap or filling, but I have not lost a tooth!! Good dentist.
Why you ask did I do the lip biopsy since all blood work (SSA, SSB, etc.) were positive. Turns out my long term medical disability provider cut off my benefits, claiming that my dry membranes were the result of medications. LOL They seemed to forget about the SSA & SSA, plus I met 5 of the criteria. Surprise, now I meet all 6!
Back to my question, does the foci score mean anything?

TORTLE
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/9/2009 1:42 AM (GMT -6)   
I had a lip biopsy about 12yrs. ago with a positive result. However I do not recall having any problems after...maybe if it does not settle down you should have it checked out. My dry eye problem is now much worse and after having jel plugs inserted in lower tear duct (to try and conserve what little lubrication I may still produce) I am about to have ducts permanently closed as plugs do not stay in for long. I am having a lot of problems with painful lymph nodes which I think are more from the fibromyalgia than Sjogren's. Nobody in the medical profession seems to be sure which is causing the probs. I am a new member and hope to maybe be of some help to others while getting whatever support that comes my way

schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 9/9/2009 8:06 AM (GMT -6)   
Hi Tortle,
Sorry to hear your dry eye conditon is getting worst.  It is miserable.  The plugs helped me a bit.  What helps the most is my goggle glasses or any type of wrap around glasses that keep the AC and heat in the car from blowing dry air across my eyes.  I found that as I eyes got more dry, they became more sensitive to sunlight.  Are your's?
I have gone through spells of enlarged lymph nodes, which seemed to settle down after a course of antibiotics.
Good luck!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5417
   Posted 9/9/2009 1:43 PM (GMT -6)   
Hehe -- goggle glasses --- I read that yesterday as Google glasses and couldn't make heads nor tails of it! Glad my brain has a little more power today!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 7670
   Posted 10/9/2009 2:01 PM (GMT -6)   
I've just had the lip Biopsy done it is very painful, I have 8 stitches in my mouth and the doctor had
to inject the novcaine(sp?) twice. Try Ice as that helps a lot with the pain.........
Glenn,
long time no see, miss ya on the CP Forum...
Geezee if the doctor had to ask me to do this again I would not ever ever. Nothing as bad as
mouth pain...
So far my results show inflammation, don't know what that means.....
((((((((((((((((((((((((((((((((((Glenn))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 10/9/2009 4:02 PM (GMT -6)   
Sorry to hear you had a rough time with the lip biopsy.  As you said, the ice helps.  I found it best to eat soft foods for a few days so food didn't get caught in the stitches.  They just dissolved on their own real quick!  I found touching the outside of my jaw/chin hurt for a few days and then that magically disappeared too.  Have a good weekend.  Hope your results come out the way you're expecting.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 7670
   Posted 10/11/2009 11:22 AM (GMT -6)   
It's been 6 days now and the stitches are still there, I've rinsed, drank water to the point of no return,
I'm so tried of the rinse and spit...I've uesd cold water/ warm water you name it.....URG>>>>>>>>>>>
geezee...and I had a slight fever the other night, but I'm on an antibotic....will probably have husband call the
doctor tomorrow as it hurts to talk too....
TY schneil
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 10/11/2009 2:03 PM (GMT -6)   
Hi Chart?
Sorry to hear that you're experiencing as much discomfort.  You are doing the right thing with rinse and spit, but I know that hurts too (to purse your lips).  Apple sauce, ice cream alternated with chicken soup is what I did so I alternated hot and cold inside and out to reduce the swelling.
Sorry to hear you got a mile infection, but it's also that time of year that things are going around too.  Hopefully it will pass quickly.  Oh, tylenol helped too for for pain.
My husband is/was a saint through all of this too.  By next weekend, the stitches, etc. will resolve a bit.
Sorry you had a bad weekend.  Keep me posted on the results
Lynne (sjogrens, raynaulds, sle, fibro, etc.)
 
 

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 7670
   Posted 11/6/2009 3:30 PM (GMT -6)   
It's been a Month and it's just now starting to heal had 2 rounds of
antibotics, the doc called said it showed inflammation but that the
lab said it was not inflammed enough..both my eye doctor and dentist agree it's
sjogren's and my rheumy yesterday said he's going to treat me for sjogren's...
just got Plaquenil prescribed.........
thanks
hugz
will never go thru another lip biopsy again....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 11/6/2009 6:22 PM (GMT -6)   
Hi Chart....
I am so sorry to hear you have had such a rough month from you lip biopsy.  Reminds me of the 6 month healing I had from lymph nodes biopsies in my neck.
Interesting that the rheumy and lab did not feel the biopsy met criteris for sjogrens.  Remember that there are other criteria's on the scale to be met, one is the shrimmer's (spelling) dry paper in the eyelid test which your eye doctor must have done to say you meet the eye criteria.  Not sure if the dental decay, etc. is another thing the dentist can use to meet criteria.
We decided against the Plaquenil in my case since it does not signifcantly increase tear/mucus/fluid production which is my primary complaints.  The pain I can deal with .  Your pain must be pretty high for you  to consider plaquenil.
 
I wish you the bes tand let me know if the Plaquenil helps.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5417
   Posted 11/6/2009 8:28 PM (GMT -6)   
schneil said...
Your pain must be pretty high for you to consider plaquenil.


Plaquenil is an anti-malaria that has been shown to slow the inflammation response in Lupus, Sjogren's, and RA. It isn't a pain medication AT ALL, although if you have pain it may be from inflammation.

The idea is to subdue the over-active autoimmune response that Lupus & Sjogren's have, not to address pain issues.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


schneil
New Member


Date Joined Sep 2009
Total Posts : 8
   Posted 11/6/2009 10:25 PM (GMT -6)   
Thank you for correcting, commenting:  I should have preferenced my statement: "pain attributed to inlamation"
 
 I understand, that by reducing the inflammation it reduces the pain.  Not to be be misconstrued as a pain medicaiton, it's the process of reducing inflammation, thereby reducing some of the pain (secondary benefit).
 
3 doctors: plumonary, rheumy, dry eye specialist and a dentist do not feel Plaquenil will help with my extreme dryness (in lungs/muscus membranes: eyes,nose,mouth, etc.  My pain I have is related to the dryness not inflammation.
Lynnwood I apologize if I possibly mislead someone.
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5417
   Posted 11/7/2009 7:49 AM (GMT -6)   
No apologies needed, just wanted to make sure it was clear what Plaq. does.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


pre-med UCTD patient
New Member


Date Joined Aug 2009
Total Posts : 10
   Posted 2/12/2011 3:38 PM (GMT -6)   
Hi everyone,
I know this is an old thread, but my neurologist just ordered a lip biopsy to test for Sjogren's. I'm 27 and I was diagnosed with a UCTD in 2008, positive ANA but other subserologies negative. I developed peripheral neuropathy in all four limbs in Feb. 2009 thought to be small fiber neuropathy.
I had 2 positive QSART (sweat tests) consistent with small fiber neuropathy, and 2 EMGs were negative (tests for large fiber neuropathy). I also have dryness, although my rheumatologist hasn't had any Sjogren's specific tests done. But both neurologists I have seen suspect Sjogren's due to the small fiber neuropathy, which if related to an automimmune disease, pretty exclusively points to Sjogren's.
My other symptoms: fatigue, joint pains/arthralgias, muscle pain/cramping, TMJ, GERD, chest pain, VOR vestibulopathy, year-round allergies receiving weekly allergy shots, headaches, history of enlarged lymph nodes on 2 occasions, Vitamin D deficiency, elevated liver function tests, pituitary microadenoma (benign). I don't have flare ups really; I feel the UCTD symptoms the same level all the time for past 2 years.
I am currently on Plaquenil, Neurontin, Tramadol, Lexapro, Allegra-D. I have failed tx. with Cymbalta, Lyrica and Savella.

Anyways, so I found this thread because I wanted to know how other's experiences with the lip biopsy went.
Also, I am always wondering if others on this forum have autoimmune related neuropathy as well...
Take care everyone and best wishes.
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