Do I need a Lip Biopsy?

I hope everyone is doing well! I'll try to brief; I have a few questions that my rheumy has failed to answer.

Months ago, I became very sick and had blood work done for autoimmune. My blood work was as follows:

Sed rate : 30
ANA: 1:40 homogeneous
SSA: negative
SSB: 3.5 +


At the time, dryness was not one of my main symptoms so my rheumy and I thought it was strange. Also, being a 24 year old male, we thought it was strange that I would have Sjogren's that gave me debilitating levels of fatigue and pain over the course of a few months onset. I am currently treating for possible Lyme, but the dryness is gradually becoming more and more of a prominent symptom of what I have. The pain and fatigue have been less.

My rheumy really wants me to have a lip biopsy done, but I cannot right now because I am on doxycycline. I don't really want to stop the doxy since it is helping me to feel better (whether it is the anti inflammatory properties of the drug or that it's curing lyme disease we are not sure).

I have really 3 questions that I would greatly appreciate perspective on:

1) My rheumy makes it sound like my blood work is very ambiguous. From what I've read, SSB is not supposed to be positive in normal people and is supposedly highly specific for Sjogren's. At the same rate, my ANA is hardly elevated and not speckled pattern. In your experience from getting a diagnosis, do you think my blood work is indicative of Sjogren's? Especially if you consider that I am starting to become very dry.

2) What EXACTLY is the advantage of a lip biopsy? From my perspective, if these diseases are individually based anyways, what is the advantage? There's no cure, but wouldn't I get treatment regardless? Do rheumatologists not prescribe plaquenil without a lip biopsy? I asked her this and she kept saying "a diagnosis is better than no diagnosis." But why, if there is no cure?

3) I want to possibly start plaquenil, but realize it takes months to work. Am I justified in taking plaquenil with the blood work that I have? Is it safe to take it while simultaneously weaning off of doxycycline? I have had a ton of eye floaters. Is this common with Sjogren's and is it connected to the vision problems with plaquenil? (i.e. can plaquenil make this worse?)

My lyme doctor says she can prescribe me plaquenil if I want to try it and if it's the drug I should be on, I want to start asap. I just want to know what others with Sjogren's think. Does the pathology sound like Sjogren's? Did your Sjogren's come on very suddenly and gradually level off into more "classical" Sjogren's?

Thank you so much! :)

Thanks for the reply Lynnwood. I actually didn't know the lip biopsy was specifically for dry mouth (although I do have that). And I agree with you about wanting a rheumy to prescribe plaquenil.

I just don't understand my rheumy. She will not prescribe plaquenil unless I get a lip biopsy, which seems rather extreme if you ask me. I guess I need to find one that I like.

Ok, the reason a lip biopsy IS relevant is because Sjogrens often affects the mouth and saliva glands. It's just not dry eyes, like many think. The immune system attacks the saliva glands and when the biopsy the saliva glands on the inside of the lip, it shows if the immune system is or is not attacking the saliva glands.
Now, I don't know if it's always positive and correlates 100% with a diagnosis.

Sjogrens is a rare disease and in my experience, not as many doctors are experts on SJS as like lupus or RA.

I had some ambiguous lab tests as well such as positive sed rate, ANA 1:160 and a borderline RF. But, I had a lip biopsy reluctantly and bingo, it was positive. For me, it really gave me peace of mind and some validation. Before, they weren't sure what I had. Otherwise with dry mucous membranes, they would say you have sicca syndrome. I now take plaquenil and it's helped my joint pain and some of the dryness.

I don't know, sometimes these diseases seem like they are on a spectrum. I don't totally understand and I don't think the doctors do either. I think we need a lot more research about this disease. Good luck to you.

I sure wish there were some definitive answers for us.

Good luck to you. I hope you can find out what's going on and get some relief.

Gosh, I guess it's anybody's guess if a lip biopsy would be positive in that case. Best to find a "trusted" rheumatologist for that one. Many docs will treat you based on symptoms. Many medications can cause dry mouth and other situations can cause dry eyes. My eyes didn't dry until much later. My nose dried out first! But I did have unexpected dental problems even when my mouth didn't feel dry.