What if my lip biopsy is negative?

[matildamillicent]

I'm 22 years old and my symptoms are-

Arthritis (toes, knees, hips, sacroiliac joints, shoulders, wrists and fingers)
Dry eyes- very rapid tear break up time, normal Schirmer, low level of tears
Dry mouth- saliva flow test= 0.2mls (anything under 1.5mls is a dry mouth)
Raynaud's
Fatigue
Nose ulcers
Petechiae
Sun sensitivity
Nail pitting.

My blood tests are all negative, ANA was positive at 1:80, now negative. Anti-SSA and SSB and anti-dsDNA all negative. But as you can see from my symptoms, they strongly suggest Sjogren's and this is what my specialists have said too.

I'm getting the lip biopsy done on the 29th, but if this comes back negative, does that mean it's definitely not Sjogren's? My rheumatologist mentioned Psoriatic Arthritis with secondary Sjogren's Syndrome. Is this possible? And would my lip biopsy be positive in secondary Sjogren's?

I'm just worried because Sjogren's explains pretty much all my symptoms and if it's negative then I'll just be extremely confused!

Thanks.

[arina83]

Welcome!

I have similar symptoms and blood results. Didn't do a lip biopsy, since I didn't know anything about it and the way the rheumy described it. Kind of wish I had, if it would have meant I got an official diagnosis.

I believe secondary Sjogrens is when you have another autoimmune disease and Sjogrens... So yes, you could have psoriatic arthritis and secondary Sjogrens. And I found this, which suggests that it is possible to have Sjogrens with a negative lip biopsy. http://www.ncbi.nlm.nih.gov/m/pubmed/1930321/

[Patze]

Hi matildamillicent,

Let me also welcome you to the SJS World and family!  Please look around the board by way of the search engine located in the upper right hand side of this page - you'll find a ton of information.  If you can't find what you're looking for, don't be shy and post away as there is usually someone about that just might e able to help.

Now with a positive ANA, there is something going on but what it might be I can't say (I'm not in any medical field so I can't diagnose).  The one thing I can say about AIs in general is that there is no rhyme nor reason to any of them, and its common to have more than one AI going on at the same time - a lot of members have more than one (I have Hashimoto's with secondary SJS and the possibility of vasculitis thrown in to make things just a tad more interesting ).

I'm sero negative so I do understand not having a clear "picture" of whats going on in your body.  Now having a lip biopsy may or may not nail down a diagnosis for you, and when I had mine several years ago, the report mentioned some infiltration but was ruled negative (I guess there were not enough lymphocytes for a positive result).

I also realize that I'm very lucky that I have a rheumy that is convinced I have sero negative SJS, and that treats me even though I've never had a positive blood test whatsoever (I'm also sero negative for Hashimoto's but the FN biopsy came up positive so I guess anything is possible).

Anyways, good luck with the biopsy and I'll keep the fingers crossed that you get some answers soon.

Take care of yourself -

Patze

[matildamillicent]

Thank you so much to the both of you.

I feel like I'm going to get a negative result and they'll completely rule it out despite my symptoms "screaming" Sjogren's! My dry mouth specialist said that she thought Behcet's Disease was more common because of my age. And because I don't quite meet the criteria for Lupus, RA or Psoriatic Arthritis (well I do meet the criteria for PsA, but I don't have Psoriasis or a family history so my rheumatologist won't settle on that).

Patze, I wish I had your rheumatologist! Mine is so dismissive because my blood tests show nothing. My ANA isn't considered 'positive enough' to be positive. Mine was 1:80, my rheumatologist said she would only begin to consider autoimmune diseases if my ANA was over 1:640!

But I'm on Plaquenil, although not doing well on it. My rheumatologist has said she would "look at other options" at my next appointment. So we will see what that means. My dry mouth specialist is amazing and she believes something's going on and is wanting to get to the bottom of it.

I also have Celiac Disease which is autoimmune

Thanks so much, I appreciate the support here =]

[Rachel F.]

Hi and welcome,
My only additional comment is that the rheumatologist told me that it could be several years before a definitive diagnosis could be made. He said with "connective tissue disorders" that things wax and wane. So, even if the test is negative now, it may not be in the future. He made it sound that things are difficult to diagnose in this arena-- and like you mentioned-- tests are negative then positive and vice versa. Hope this helps a bit.
Take care,
Rachel F.