Deb

I figured you must have seen an ophthalmologist, and he would have done various tests, not just the schirmer's. But none of the other tests can definitively Dx Sjogren's as they cannot see the lymphocytic activity. They can, however,very clearly determine if you have severe dry eye (which you do) and also whether abrasions (or other secondary problems) due to dry eye have occurred. It is great that he obviously did a full evlkautaion of your eyes and can see enough signs of damage and dryness to logically conclude that Sjogren's is a likely factor as the root cause (once he reviewed you medication list and determined that no meds you take cause these symptoms),

He sounds like he's on top of his game and ready/wiling to help you. The next step, however, should be to see a rheumatologist (and send the ophthalmologist notes) to see if a lip biopsy is necessary, since you're sero-negative for Sjorgren's antibodies. With all your other conditions, it may NOT be necessary...but best for a rheumy to make that call as they are the ones to treat your Sjogren's.

I have tried many things for Sjogren's. Of course I take PLaquneil, which if first line treatement for the Sjogrens' itself. This medication is a DMARD (disease modifying anti-rheumatic drug) that is an anti-malaria drug found to help some symptoms of Sjogren's (profound fatigue, joint pain and some say it helps the dry mouth/eyes) and also to slow progression of the disease.

Since I have neuropathy (both peripheral and severe autonomic) directly related to the damage Sjogrne's caused to the dorsal root ganglia, I have tried numerous medications to reduce PN pain & sensory issues and profound autonomic dyfunction. I tried Neurontin first and used it for years until I maxed out on the dose and still had pain/symptoms (but it did help greatly for several years before progression). I also tried numerous other meds that I couldn't tolerate (side-effects) or they just didn't work...like Cymbalta, Nameda, Lyrica, Lamictal, amitriptyline, and I'm sure other that I've forgotten.

I have also tried to treat the Sjogren's itself to improve the neuropathy with medications like steroids. Both long term, moderate/high dose (40-80 mg/day), and very high dose IV pulse steroids (1 gram a day for 3-5 days). The daily dose did very little (except help with joint pain). The high dose helped with some symptoms, but not enough to make it worth while...and the hefty price to pay in terms of osteoporosis, etc. But during severe flares of Sjogren's, it did help me greatly.

I also tried immunsuppression drugs like Cellcept. It also was helpful for certain symptoms. However, I am immune deficient as well and I got a serious life-threatening infection while on Cellcept and had to stop.

Like you, I have several other conditions and therefore take many medications. It takes a good team of doctors (that are willing to work together) to find an appropriate balance of medications to cover the most problematic conditions, and even the minor conditions, without creating too many side-effects. It really is a balancing act.

Right now my Sjogren's is treated with Plaquenil, Restasis, lubricating drops. My neuropathy pain (after 12 years since onset) is now treated with lower dose narcotics (Oxicontin and Percocet for break-though pain). Damage to the dorsal root is permanent, so basically it a pain mgmt treatment. I do take various cardiac meds for my BP and heart rate due to the autonomic neuropathy (also permanent damage) (Cardizem CD, Midodrine, Florinef, Imdur, and Toprol XR...and nitro as needed for chest pain due to cardiac spasms (autonomic neuropathy). Then there is GI meds for autonomic dysfunction too. I also receive monthly IVIG for both my immune deficiency AND my now new higher doses for my neuropathy. There is not great expectations of repairing damaged nerves, but more hope to slow progression before I can no longer walk.

I'm sure this is much more info that you probably wanted to know(sorry), but keep in mind that Sjogren's is NOT just dry eyes & mouth. It can start out that way, and a few people may stay with minor symptoms, but MANY suffer from the systemic effects of Sjogren's, because moisture is needed everywhere in the body. Lungs suffer when they get dry, same for GI track (constipation can occur without moisture in the track), and the nerve damage can effect so many organs. This is why a rheumatologist is appropriate for a complete evaluation so you know exactly where you stand and what needs help now.

I hope this is somewhat helpful. If you have specific questions that I didn't answer, ask again, and I'll address them. I thought I got the basis of what you were looking for, but don't hesitate to ask anything.

Best,
Anita