If you don't have dry mouth, then you may not have lymphocytic infiltrates in the salivary glands...thus not Sjogren's, but one of the other AI diseases. Joint pain, fatigue, etc are common with several of the AI diseases. I don't remember what 'lung issues' you have (it's not detailed in this thread), but lung issues are also common in sarcoidosis. Of course lung issues like asthma, could just be independent and not related to your problem.

Could your dry eyes be a result of meds you take? Even simple allergy meds (benadryl) can cause dry eyes.

I will say that, (although uncommon), there are patients who don't have overly dry mouth (but it's usually at least minimally dry) and still test positive for Sjogren's (whether blood or lip biopsy). So it could still be possible to have a + lip biopsy. But since you sound like it's not dry at all, I would exhaust other AI diseases or other causes in general first before undergoing a lip biopsy.

Just curious... 1) what lung issues are you talking about? 2) do you have dry mouth at all or lots of cavities?

Wish I could be of more help, but your case doesn't sound typical or jump out at any particular disease. The dry eyes certainly go with Sjogren's, but odd without the dry mouth.

Thank you en bloc for your reply.

I have persistent shortness of breath and tightness in my neck (specifically the sternocleidosmastoid muscles). I used to have asthma but my last attack was in 1982. The shortness of breath has been on and off for 2 years now (more on "on"). This last 3 or 4 months, my breathing has become more difficult. I dont normally have wheezing and I dont have cough at all. I rarely experience wheezing. I had PFT in 2008 and 2010 - both normal. I had a CT scan of my chest and was also normal.

My ANA consists of the following tests: (most of which I dont understand, but the important thing is they are all negative)
1. Anti-DNA (DS) Ab Qn
2. RNP Antibodies
3. Smith Antibodies
4. Antiscleroderma-70 Antibodies
5. Sjorgren's Anti-SS-A
6. Sjorgren's Anti-SS-B
7. Antichromatin Antibodies
8. Anti-Jo-1
9. Anti-Centromere B Antibodies

Well, in 2010, I had eye discharge for many months, they found an inflammation in my right lacrimal gland. The optha got a specimen from the gland for biopsy. Thank God, it was normal. After that, right eye has become very dry. The doctor said that both my eyes are dry (but I dont experience discomfort with my left eye). The only prescribed medicines I am on now are Synthroid and Gabapentin and of course Restasis and Fresh Kote. I am taking a whole bunch of supplements which are recommended in this forum.

Do you think sarcoidoisis can be seen in CT scan, if the lungs are affected?

I dont have dry mouth. I am wearing a bridge and I have dental fillings for most of my remaining teeth.

Definitely, I always feel tired. I associate my tiredness to the PN pain. But I am not sure.

I have sjogrens as a 2ndary disease related to my MS. I dont have a dry mouth, but I do have very dry eyes, skin and joint pain. I have punctal plugs in my eyes (tiny little plugs that stop water from escaping) and during flares or bad times I use a prednisolone eye drop which helps a lot.

I chose to not have the lip biopsy as the RA MD said it was not really needed since my ANA was negative, but since I had so many clear signs of the disease, she would mark me as + for 2ndary related to MS.

Even in the face of a negative biopsy there are many interventions you can take. Use eye drops (no preservatives!) I get the single vials so they dont spoil or contaminate. Ask your eye MD about plugs for your tear ducts. They dont hurt a bit, and make a world of difference. Drink plenty of fluids. Avoid hot baths as that can dry out your skin. Rest your eyes as much as you can. Avoid straining for things like computer games, reading for long periods or even staring at a movie screen for a long time.

Best of luck!

Thank you Dejibo for your thoughts!
The optha actually mentioned the plugs in one of my visits. But, I try to stay out of it for as long as I can... Restasis right now do some relief and FreshKote. I also use Refresh PM at bedtime.

Thank you for all your suggestions. I will take note of them.

Idiopathic PN,

Your SOB should be investigated further, by a pulmonologist. Lung damage from Sjogren's (typically, interstitial lung disease) can easily be seen on CT...so can Sarcoidosis. The SOB could also be cardiac in nature. Either way, it should be followed up.

Being diagnosed with Sjogren's with no dry mouth, no positive blood work and no biopsy is uncommon but I'm glad Dejibo is being treated just based upon symptoms regardless of what the underlining problem is...that's all that matters in the end.

Sometimes the cause of our PN and other problems is evasive. I hope you are at least getting suitable treatment for your PN, eyes, and find what is behind the SOB...so that can be treated as well.

Hi en bloc,

I will discuss about Sjorgren's with the rheumatologist tomorrow morning...

I have been reading about experiences of those who had lip biopsy and it seems a painful experience, though, you mentioned that your experience was not bad. Who normally perform the lip biopsy, ENT or the rheumatologist? Who has the better understanding of the disease?

I read today on one article that lip biopsy confirms not only Sjorgren's but may also confirm sarcoidosis and amyloid polyneuropathy. How true is this? This has never been mentioned in our forum (or maybe I have not just read it).

http://emedicine.medscape.com/article/1520068-overview

Thank you so much, en bloc.

There are some that have bad experiences with ANY procedure, so you will come across those who had one with the lip biopsy. Keep in mind that people don't go out of their way to post on a forum about good experiences, so I bet for every 1 bad experience there are hundreds that went fine...maybe even more.

Ask the doctor how much experience he/she has in doing these. I would stick with a large academic hospital as they would do more...also the pathologist reading it might have more experience, and this is just as important as the doctor doing the procedure. ENT's do them, so do some dermatologist (mine was done by a derm at Hopkins), and some oral surgeons. I don't know of many rheumys that do them, but that's not to say that some don't...I just don't think it's common. As for understanding the disease itself better, the rheumatologist.

And don't forget to request a copy of the pathologist report.

I have not heard of Sarcoidosis and/or amyloid polyneuropathy being diagnosed from a lip biopsy. Must be something new. Medscape is a reliable source, I'd be curious to know how or whatthey look at in this case that's different from diagnosing Sjogren's...which is looking (and counting) lymphocytic infiltrates.