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Sjogren's Syndrome Lip Biopsy

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Sjogren's Syndrome
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Posted 2/14/2011 8:30 PM (GMT 0)
HI:

I just had lip biopsy done today ....about 2 hours ago...so far swelling somewhat and lip feels achy kind of like someone punched me there....not as terrible as I made myself anxious about...just hope the pain doesn't get too much worse....ice definitely helps...My produre was done by an ent right in the office.....does anyone happen to know how long you should wait to smoke after this?

Posted 2/22/2011 5:03 PM (GMT 0)
As soon as the numbing med wears off it'll get painful, you might not want to smoke for the rest of the
day to give your lip time to heal and smoking increases healing time. It is kinda painful procedure,
one that I'll never go thru again. my ent told me to rinse with hydrogen peroxide and I was
put on an antibotic, but ice helped the most...eat easy items such as cooled mashed potatoes, or
ice cream, plain ice cream...Hope you do good...
((((((((((((((((((((((((((((((((((((LBR))))))))))))))))))))))))))))))))))))))))))
well wishes...keep us posted...
Posted 3/11/2011 4:48 AM (GMT 0)
 

I had a lip biopsy performed 6 weeks ago.  Since having the biospy, I have constant cold sores in the vicinity of the incision & tingling/numbness.  The ENT that performed the biopsy said there aren't any nerves in the area so the tingling must be healing.  However, I can feel a hardness at the incision & the cold sores aren't my imagination (they are very painful & unresponsive to valtrex) and the numbness to driving me nuts.  Making matters worse, I was told that no inflammation was found, so these side effects are for not! 

Still I have frequent bronchitis, recent CT scan of my lungs reveals pericardial effusion, residual thymus tissue, increased lymph nodes, bilateral apical pleural thickening, and non-specific pulmonary nodules.  Blood test revealed I have a positive ANA (H), 1:320, pos SSA ro, pos Anticardiolipin IgA, pos ASCA IgA, pos ASCA IgG, high CH50, pos gliadin ab IgA, anti-Gliadin IgG and vitamin D deficiency.

My rheumy thinks I might have Sjogrens so she put me on Plaquenil, although I am confused because alot of the research I did on my blood tests & CT scan is pointing to Lupus??

I was thinking about going to a endocrine specialist due to the thymus gland & thyroid swelling, but not sure if this will give me anymore answers.  I just want to make sure that the docs are treating me right...I am so tired of taking steroids to reduce the swelling/pain in my entire right side (head-toe), pressure in my right eye and pain through my entire body (however worse on right side).

Thanks...and gentle hugs! 

Posted 3/11/2011 5:18 AM (GMT 0)
Plaquenil is the initial treatment for Lupus, so even if they started out giving it to you for Sjogren's it will be acting on Lupus if you have it. If the lip biopsy was 6 weeks ago, don't they have the results by now?

If your sores are not responsive to Valtrex I imagine they are not "fever blisters" (herpes simplex type 1) - they could be canker sores which heal more slowly than fever blisters. Or they could be some other type of sore altogether resulting from the biopsy -- remember people with auto-immune diseases (like Sjogren's & Lupus) often heal much more slowly than others.

If you are still experiencing this much discomfort and your rheumy is stuck on only plaquenil for medication, I would definitely advise seeking a second opinion. However, you do talk about steroids so I wonder what meds, what dosage, and how long?

Hope you feel better soon, (PS. My lupus has been predominantly on my right side for all 8 yrs since dx, I've asked before and a few others have it mostly right or left or but mostly people have it all over.)
Posted 3/13/2011 12:35 AM (GMT 0)
Do you have other Auto immune problems? a lip biopsy usually will only take a day or two in a healthy system to start a good healing process. If you are compromised by say Lupus or something else it may be slower. Drink plenty of water. Whether it is sjogrens or not fluid is important in the healing process. if you have another auto immune and are on immuno suppressant drugs if you don't feel like you are healing or starting to heal at all in 4-5 days call the dr. you may need a bit of an antibiotic. I am not a dr. I am just going off other things i have been through. also i am a hygienist and sores in the mouth tend to heal slower and lips because well talking and in the mouth because it is warm and moist and a great place for bacteria.

Any way keep us posted and I hope you are feeling tip top soon!!!
Posted 3/13/2011 12:39 AM (GMT 0)
ps... wait as long as you possibly can to smoke ... it constricts blood flow to the area that is what it needs to heal. keep two ice packs in freezer you will be wanting them and as one gets warm you can throw it in and take the other out that will keep swelling down... sometimes just putting a really cold washcloth but it is hard to keep cold... you can which i love ... but people don't typically own.. remember hot water bottles... fill with cold h20 they are great.
Posted 6/25/2011 7:19 PM (GMT 0)
Hello everyone, I just found this thread. I had a lip biopsy about 2 years ago. I can only relate my experiences so here goes. I had an ENT that was removing a suspicious lump from behind my ear and was determined to do the biopsy due to lymphoma and Sjogrens. I agreed but afterwards wished I hadn't. It was mostly to do with the fact that the procedure I needed did not cause any discomfort but the lip biopsy which was elective was a real pain. My spot healed fine but it took about 9 months for the numbness to go away and I now have a hard white spot on my bottom lip which is hard to cover. The biopsy was negative but my rheumatologist disagrees and states all my symptoms point to SS. Which I agree, I can't remember a time that I produced salivia. I did try Salagen and it worked for a while and man was I suprised when my mouth filled with water. I had a complete set of dentures by age 45. The morning I woke up and ran my tongue over my teeth and broke one was the last straw. As an adult I had only had one exam that no problems were found. Between root canals, crowns and filling I bet I spent $100,000 in dental bills. Dentures are a pain but worth the loss of the pain my real teeth caused me. I am so glad to have found an area with people that understand.
Posted 7/10/2011 3:02 PM (GMT 0)
I am having a lip biopsy after a positive ANA test, and two positive Sjogren's SSB antibody tests, though my rheumatologist doesn't think I have Sjogren's.  I also have neuropathy with burning pain in all 4 limbs (inside of legs and arms) and symptoms of nerve entrapment as well.  My symptoms began shortly after a surgery and subsequent infection with symptoms of what was suspected to be genitofemoral nerve entrapment.  The pain then spread down the affected leg, followed by the other leg and then both arms simultaneously.  Because the pain spread beyond the originally affected area, the surgeon and my neurologist suspected that my problem was autoimmune in nature.  I've had EMG tests which gave mixed results, no apparent motor problems.  I'm taking medication for high blood pressure (which my PCP says is related to pain issues), gabapentin for the pain but it doesn't help much.  I've also tried Lyrica, Savella, Cymbalta with no relief.

I'm not too worried about the pain from the biopsy as I can tolerate pain fairly well.  I'm having this done by an oral surgeon with lots of experience.

Posted 8/28/2011 2:02 PM (GMT 0)
I had the positive blood work so did not have the lip BX....
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