New with pending Lip Biospy

[Ms L]

Thanks much for the welcome SJSman.  I'm guessing I'll find out after results of the lip biopsy whether or not the Rheumatologist will change his diagnosis.

[Sjogi32]

Best of luck today Ms L. Any questions post biopsy feel free to ask.

[Ms L]

Okay, thanks!

[irish]

It doesn't pay to get too hung up on diagnosis as the docs are so changeable about the blood work and diagnosis. The main thing is to find a doc who listens to you and helps treat your symptoms. Also need a doc who will refer you to specialists when things come up that he doesn't understand. Good luck. irish

[Ms L]

I had my lip biospy last Wednesday - it really wasn't bad.  My ENT numbed me - I sat for 10 minutes.  At first I felt him slicing, so he numbed a little extra and returned. I was just so tense (thinking it was the unknown).  After the procedure (which I barely felt), he gave me gauze which I never needed. While performing the procedure, he told me it didn't look like Sjrogen's. I stopped on the way home and had a luke warm drink which felt just fine.  I ate something soft like yogurt for dinner.  The next morning the swelling or numbness was barely there. I could feel the stitches with my tongue so I ate soft for a couple more days.  I've been eating regularly all weekend.  So that was relief.

I met with my Rheumatologist last week and let him know how much I disliked the prednisone (didn't tell him I've weaned myself off of it). I had already began gaining weight and face was way too puffy. 
I think I was really expecting to have a negative lip biopsy. As far as the HydroxyCHLOROQUINE 200 mg tablet (plaquenil) - I've reduced myself down to one per day.  The Rheum says after the results of the lip biopsy, we could possibly discuss other meds besides the prednisone. 

I received results this morning. The ENT says the results found Sjogrens and that he would send them over to my Rheumatologist.  I have so many upcoming appointments I'm thankful for electronic devices to help me to keep up with it all. 

Take care all and thank you so much for your help through this process.

[warmwaters]

Welcome.

The first few months will be overwhelming, because you'll have all these new bits of info to learn, all this jargon to learn, and you may not even know which thing to worry about!

It does settle out over time.   The focus will be on managing symptoms like dryness, pain and fatigue, and it may take some experimentation to find the right blend of treatments and medicines that work for you. One of the things that is amazing is how differently we all respond to different treatments.   So when we suggest ideas, understand that it doesn't come with a guarantee  !

Good luck on your journey, and let us know how it's going.

[Vaxgal]

Hi all! I have a question related to the lip biopsy. My blood work showed that I was Anti SSA + at 2.0 and ANA +, but the titer was not done. This was done six months ago, so this is new to me. My Rheumatologist, who is Chief of Rheumatology, considers Sjögren's to be like a skin rash, were Lupus is like cancer. He has also said to me that when the antibody levels are gone, the disease is gone. He told me that as of right now I'm diagnosed with Sjögren's, but if the antibody number go away, then my symptoms are caused by something other than Sjögren's, to which I asked him why would I have the antibodies for Sjögren's and not the disease. He stated that there are many other reasons for a + anti SSA test (my ENA showed only anti SSA was positive, that I didn't have Lupus, Schleroderma, anything else from that panel). He said the lip biopsy would say if I had Sjögren's or not.

My question is, could you have positive blood work results with a negative lip biopsy, and still have Sjögren's? I can't find any information about this, so I was wondering if anyone here has any information. Thank you for any information and guidance!

Vaxgal