Should I have lip biopsy done?

[Vaxgal]

I had positive ANA, no titer, positive anti SSA 2.0, dry eyes, mouth, nose, and throat, should I have lip biopsy done? My rheumatologist said if I have it done it will tell for sure if I have Sjögren's or not. He said if it is negative then I don't have Sjögren's. With those other symptoms, do I already have it? If I do it and the lip biopsy is negative, do I not have Sjögren's? My rheumatologist said that, but he's also said that once my antibodies go to zero, then I don't have the disease anymore; that I don't have my Graves' disease anymore because I'm on Levothyroxine; and that Sjögren's is like skin rash, were Lupus is like cancer, meaning Sjögren's is not serious or important. I'm working on a new rheumatologist, but not sure what will happen. I'm just really confused, so any assistance would be so appreciated!

Thanks! Vaxgal

[JoanElizabeth]

I would start by finding a new rheumatologist. Mine says SS and SLE are a spectrum, but not that not that SS is benign. Clearly the rheum you are seeing isn't taking SS seriously and is also wrong about no longer having the disease when there are no antibodies, 1/3 of patients don't even have the antibodies. I tested negative for the SSa and SSb antibodies but have a positive lib biopsy.

Now on to the actual question. My rule of thumb for any invasive test is "will the results affect the treatment?" If the answer is yes I will have the test, if it is not I would skip it.

Based on the information you provided it doesn't sound like you have any extraglandular symptoms but if you do it may be helpful to get the biopsy and possible subsequent because that may change what treatment your doctor chooses. However is your only symptoms are dry eyes and mouth it probably will not affect your treatment.

For me I choose to do it even though my rheumy said he only thought it had a 10% chance of being positive because most of my issues are extragladular and need to be treated with immunosuppresants. Since it was positive I am glad I went through with it.

Also I will warn you if you go on google and look at people's experiences their are some scary things out there but it is not that bad. I only had a bit of pain on the day of the procedure, after that the stiches bothered me more than anything else. I am just under 3 weeks out from it and you can barely tell it was done.

[SJSman]

Hi Vaxgal,

I seem to be at a loss for words!  I just want to say that I hope you figure out what you want to know and feel better soon.

You will get a good spectrum of opinions on this Forum to any question that you ask that is invariably helpful.

[Vaxgal]

Thanks JoanElizabeth! I do have a lot of extraglandular symptoms, which was the initial reason my Pain Management and Neurologist wanted me tested. I get severe muscle cramps, especially in the back, as well as arthritis in (most) multiple joints, including a total knee replacement at 44, neuropathy, severe back pain which is why I had a spinal cord stimulator in March. My current rheumatologist won't write prescriptions for me. He said that he doesn't feel plaquanil does anything. My first visit he wanted me on Cymbalta and Voltaren gel for my joint pain, but wouldn't write the script but wrote in a note to my primary physician that he wanted her to write it, which she did. I took the Cymbalta and used the Voltaren gel faithfully, even though the Cymbalta didn't help after three months. When I saw him this time, for my second visit, he was upset that the Cymbalta was not written at a therapeutic level. He actually pulled out his smartphone, pulled up a drug app and was showing me what the dose was supposed to be. I told him that I can't write prescriptions, but if he wants another doctor to write a script, maybe he should write how it should be for them.

Thanks SJSman! He gets mad when I reference the forum, because he is the doctor. I told him that there is a lot of experience here, with a lot of knowledge from experience as well as talking to health care professionals also educated in this field. He didn't like that comment!

I am getting another referral for a new rheumatologist when I see my Neurologist.

I think my biggest fear is that it comes back negative, then what do I do. I feel like with all these symptoms, I even have abnormally dry skin that my dermatologist has diagnosed as related to Sjögren's, so if the test is negative what is causing all of these issues? I have the consult with the ENT the end of July, so I'll have questions for him.

Like I said, I'm just afraid the result of the lip biopsy will be negative and then I'll be told that I don't have Sjögren's, and will be at a loss for what's going on.

Thanks!