Hello ALL !!
Another question: Back in March last year I was diagnosed based on symptoms by the Rheummie (diagnosed with Fibro and RA since 2006 - but reevaluated for SS in 2011) and a Shchirmers Test in 2011 by the Ophtalmologist - been suffering from dry eye since 2005 - My labwork came out all normal so I am Seronegative like many others !! - I was put on Methotrexate between March to November 2011 and have been off it for 2 and 1/2 months now - My Rheummie never did a lip biopsy - He said I didnt need one cuz I had all the symptoms and dry eye and mouth - I want to have one done but behing his back - Would you suggest it´s worth doing a lip biopsy specially if I took the Methotrexate ? Sometimes I think results will be altered by the medication? The pathologist at the Lab says we could try though - please suggestions -THANKS! :D
Hi Virgi,
I have a question for you. :D Why would you feel the need to have a lip biopsy if you are already being treated for Sjogren's? Sorry, maybe I missed it in your post. I was not required to have one for my diagnosis.
Your question is a good one, though. My guess is that because you have been off the medication for a a while now, its affects should be minimal. But that's just a guess. ;)
If you have a diagnosis of Sjogrens without a lip biopsy I would NOT have a lip biopsy. The minute you have a biopsy and it is negative you are up a creek.
I am wonderng why you quit the methotrexate. Were you having some side effects? Many people find that they feel better on the methotrexate. Also, ifyou would have the lip biopsy and it would be negative the insurance company most likely would not pay for methotrexate or any other medication the docs would order to slow the autoimmune disease. The way it is now you have a diagnosis. The negative biopsy would probablay take away the diagnosis of sjogrens.
I would just skip the darn lip biopsy because the fact that you took methotrexate could most certainly affect the result. If it ain't broke, don't fix it is my motto. Also, are you taking prednisone, cause that sure can affect the results of the biopsy. You are darned lucky to get a Sjogrens diagnosis the way you did. So many docs don't use their common sense. Good luck. Irish ;D
My advice is don't do the lip biopsy. It's easy to get a false negative test result with any of these tests and if it comes up negative, you could lose the option to have treatment for a long time.
What all those people said, plus the lip biopsy is a nasty little bugger. Many (including me) are left with numb lips years later.
It is a very subjective test also. One dr or lab may say it's negative and another might call the same test positive. Then you really are up a creek. All that for nothing. Lucy
I am passing along the opinion of Fred Vivino, MD. He takes some time to talk to each person who comes to the Sjögren's Syndrome Center's research diagnostic study at Penn Medicine's Penn Presbyterian Medical Center in Philadelphia. There are three such centers, all running similar diagnostic research, that is a way to get -- for free -- all your blood work and biopsy and sialography done in one trip for six to eight hours in one day.
I don't remember how I put it, but I asked Dr. Vivino about the timing of lip biopsy -- late, after other tests for SjS, or early, at the initial workup. He surprised me by saying "Get it early," that the lip biopsy often is positive when the blood work is (*still*) negative.
Irish, though, has some good points about insurance not covering Sjögren's if the lip biopsy is negative. Also, that Methotrexate or Prednisone could swing the results of a lip biopsy to negative, rather than positive.
I hope that the multi-center diagnostic study -- in San Francisco, Philadelphia, and at Johns Hopkins in Baltimore -- will be able to address such issues, due to their comprehensive and comparable records of diagnostic testing.
Oh, and I wouldn't fear the lip biopsy from one of these centers, and of course others. Mine could have been five times worse and I would have been functioning the rest of the week and weekend. I never needed a painkiller; ice for a couple of hours did the job.
I did get a rock on the lip when I was 11 that made it numb for 40 years, and then it was suddenly gone. Didn't stop me from kissing a guy when he wanted to kiss me!
Best,
Soycoffee
And, having had a lip biopsy, I would say it's perfectly possible to have another, if you continue to have signs and symptoms of Sjögren's and want the confirmation of the lip biopsy -- which Dr. Vivino called the "gold standard" of diagnosing SjS.
For what it's worth,
Soycoffee
Thank you everybody for replying ! I do read your posts but take a while to answer back - Im so sorry !
Soy Coffee - WHAT A GREAT PIECE OF ADVICE ! I wish I could have an appointment with Dr. Vivino to clear all my doubts.
Have given it a thought and after reading your posts well it seems that I did take all February looking at myself in the mirror every time I wake up - tongue shriveled, lips like a prune - eyes like a frog - skin with a matte tone like my walls - and I could go on and on hahah - but yeah Im convinced I have Sjogrens
I do get bummed by not having all the checklist for diagnosis complete but yeah I do have it -
I guess that checklist is just one of those checklists doctors have made up so that they can feel better if they forget to ask soomething :S