To do Lip biopsy or not?

[Kimberley]

Okay, that's my question.  I have a $1500 deductable to meet, there will be general anesthesia, lots of blood, and other fees that my insurance most likely will not cover!  So I'm thinking... NO lip biospy, what if it comes back inconclusive... highly likely!
I don't have that kind of money laying around?? What would you do??

[Billydude]

It all depends on if you need some confirmation of Sjogrens.  Do you have negative blood work?  Do you need a confirmation on paper?   Although many of us had different experiences my biopsy was a breeze.  I didn't have very much pain or blood and it healed quickly and nicely.   But,  I did need to have some sort of confirmation as I was pursuing a disability claim.   So,  if your diagnosis is based on overall accumulative symtoms and you are happy with that I'd say pass on the biopsy.
Steve

[Kimberley]

Well, okie dokie Steve.. Passing really sounds like a great idea too me.  I wish you luck with SS, I had to do that several
years ago, what a pain in the A...., but couldn't work, needed money.... that's what I paid in to SS for all of those years.  I have a job now that allows me to work, for now anyway... I hope my symptoms don't get much worse.
Kim

[SueAnn]

Hey again Kimberly,

I had a lip biopsey and it came back inconlusive.  I will not have another one of these anytime soon.  I ended up with 4 stiches, could not eat  without pain for a week (until they came out) only to get "it might have been the wrong part of the mouth".   I don't need a firm dx as my dr is willing to treat with just my bloodwork which is just barley positive.  I have all the classice SJS symptom and I am doing well with the treament plan so far. 

Anyway, if you can skip it I would.

Sue Ann

[eyeamdry]

Unless the lip biopsy gives you privvy to some special treatment, I'd pass on it too.  It is often inconclusive, which leaves you in the same place, with the meds telling you there is nothing wrong with you.  I have a permanent numb lower lip, at least two years so far. 

If your dr will treat the symptoms, go with that.  Lucy

[Epson]

No way Stevo and I just had a cystoscope, wouldn't of had that if it weren't for the tumor. I know some people that said there lip never regained feeling and the results were inconclusive any way.

[Patze]

Hi Kimberley,

Is your doctor pushing for this test?  Will he still treat you without having it done?

I can understand your apprehension, $1500 deductable is a lot of money (I'd be nervous as heck too!).

I'm also another one who's lip biopsy came back inconclusive.  I now have a permanent numb area on my lower lip, and like Lucy, I had mine done a couple of years ago too.


Patze

[Billydude]

Oh I wasn't promoting the lip biopsy.  I was just saying that mine went fine but that many don't share in that experience.  I was telling her that she shouldn't have it done if possible.
Steve

[Lesleybird]

      Did your doctor do an ANA and an SSA and SSB test on you (blood tests)?  What were the results?  If either (or both) your SSA and/or your SSB are positive and you are having symptoms of Sjogren's then you can safely assume that you have Sjogren's without cutting on your lip. All of the meds to help treat Sjogren's can be given if Sjogren's is suspected without doing a biopsy. If your neither your SSA or SSB are positive and you have money to burn then have your biopsy. Don't know what you would be gaining from a biopsy if the blood work points to Sjogren's and you are having Sjogren's symptoms.  Lesley

[lady nova]

Hey Kimberley,


      I'm going to pass on the advice that my rheumatologist told me. My blood work does not support the diagnosis of Sjogren's Syndrome, but I do have stuff that indicates issues with autoimmune diseases. However, I do have all of the classic symptoms of Sjogren's. He told me he doesn't do lip biopsies because of the negative side-effects. He said quite a few patients he knew ended up having a numb area on their lips permanently. That being said, he said it really isn't worth doing it, and like others have said, it doesn't always give you a definitive answer. I'm on all the same kinds of medications as others are on this board. I'm on Plaquenil and Restasis. So either way, he is treating my health stuff. So just as long as your doc is giving you treatment for your symptoms, and is monitoring your case, does it matter to have the lip biopsy? I would say, don't do it. I think it is sufficient to say that if you have all these symptoms and your doc is treating you like you definitely have Sjogren's. I think you can say DEFINITELY that you have Sjogren's Syndrome.


All Best,


Lady Nova


P.S. However, if you really want to get it done, I will always support your personal decision, and wish you the best.

[baddabingtim]

Well I just had one last week and it was 'inconcluisive' - which means I just wasted my time - WOuld I do it again - I don't think so

[ktfabian]

Kimberley-

I never had one.  I went for a couple of years without a firm diagnosis, but got the treatment I needed when I found a good rheumatologist.  I can certainly understand not wanting to put out $1500 if it won't definitely give you a diagnosis.

I got SSD for a back injury, but when they did my 5 year review (about 8 years later) they accepted my Sjogren's at face value without a lip biopsy or even really definitive blood work.  I haven't been reviewed again.

Good luck with whatever you decide,
Tracy

[Sjenny]

Just as a heads up - if you can wait, researchers are now working on a way to diagnose Sjogren's from "markers" in the saliva.  Granted I have no idea how long it will take or if they will ultimately be successful.  But wouldn't it be wonderful to have such a test which would be so easy and so much less painful and invasive?

Sue