Lip Biopsy

[katie3]

I am very recently diagnosed... I have seen 2 rheumatologists. I thought it would be good to get a second opinion also the second Dr. is with a group at a large University Hospital and teaching institution. I have a positive SSA, Very dry mouth, somewhat dry eyes controlled with drops. He told me that all of my other blood was was normal and no other indicators of Sjogrens ( I did have an ANA of 1.8 ) He said he will treat me for Sicca but the Gold Standard in diagnosis is the salivary lip biopsy which he wants me to have. Right now I am trying to get my sore mouth under control and really don't want to do the lip biopsy. Mentally I would love to get it done and now what it is but really don't want to add more pain to my mouth right now... also........ thoughts on any supplements I should be taking.. Right now just my Salagan and a Multi Vitamin not sure where to start with supplements as there are so many opinions.. I would love your input !

[A Mom on Spin]

Katie,

I'm not a fan of lip biopsies.  I had mine done at a large teaching hospital and, even though I had well documented Sjogren's, the results came back as "chronic sailendentis".  What's more, it's been over 6 months now and I haven't regained feeling in that part of my lip.  I view the whole escapade as my own fault though because I opted for the biopsy so I could perhaps take part in future studies.  Now I cannot.  I never dreamt that the results of a lip biopsy could be wrong, which my rheumatologist agrees they were.

Liz

[Navigator]

Well. What are you on?   The typical treatment of SJS is to start the patient on plaquenil, restasis for the eyes which is an ophthalmologist decision, and evoxac or pilocarpine for dry mouth a rheumy decision.  What do you  hope to gain from a lip biopsy?  My personal belief is you should have your Vit D. tested (blood test). Very low values of Vit D can have symptoms that can be relieved with supplementation.   And thyroid blood levels since so ofter the two go hand in hand. 

I have never had a lip biopsy and I was diagnosed 14 years ago without it.

[katie3]

The rheumatologist I saw says the lip biopsy is the gold standard , even though I am SSA positive he is not 100% convinced that I have it based on all my other tests..... that is the only reason I considered it.. I was only put on Salagan. I saw my ophthalmologist  and my dry eyes were doing  better so I am using Systane gel. Do all SJS go on Plaquinel , should I be on it ? I will request a vitamin D test.. my TSH was normal..... I truly appreciate your input as this is all a new to me...

thank you, thank you..... Katie

[Navigator]

The least invasive medicine is plaquenil.   BUT it is not without potential side effects.   The most important is potential retina issues. You have to have retina scans before you go on it and have annual follow ups with an ophthalmologist. My rheumatologist will not renew my prescription without a clearance from the eye doctor and I respect that.   I get the sense that your symptoms are not that bad.

Test your Vit D. as a very low level can also have symptoms.  And then see how you feel and how it goes.

[katie3]

My mouth, nasopharynx and throat are extremely dry and painful, along with mouth sores and fatigue... Wondering about Plaquinel... does it help with that
thank you, thank you... Katie

[Navigator]

well....the Salagen should work on the dry mouth issues.  I take evoxac and am happy with it. Try to use Biotene products like the gel when you go to bed also.   Much of this takes trial and error.   

For mouth sores...if you are talking about ulcers triamcinolone acetonide dental paste 0.1% is very good at clearing up mouth sores in a couple of days. It is a steroid in a gritty dental paste.  I recommend using it while you are sleeping as it is gritty. It can be a pain to wipe off your mouth in the am.  This is not something you get over the counter. You have to have a doctor?s prescription.

Plaquenil is said to be useful for joint pain and fatigue. It does take a while to kick in. It is a malaria drug that just happens to be useful in SJS. I do not know about its usefulness with dryness.

Start slow and try to find what works for you to mitigate your symptoms. This is not a sprint.   Try to take care of yourself by healthy living and try to minimize stress.  It all helps.