YYC Mommy, I'm glad you're checking further into an optometrist who has an interest in SjS patients. Meanwhile, if your eyes are dry, go to the drugstore and find some artificial tears if you don't already use them. Buy a small bottle, because everybody is different as to which brands work for them. I rotate among Optive, Refresh and Systane. I also use Refresh Liquidgel at night; it's thicker and so lasts longer. Since I usually only use drops 4x/day, I use the bottled ones which have preservatives. If you use them more often than that, the preservatives can be a problem, so there are single-use vials available in each brand, also.
On the rare occasions my eyes are really bothering me, I use the ones called Celluvisc -- really thick, so your vision is blurry for about 10 minutes. But they make your eyes feel better. I stand the vial up in a clean old prescription bottle, since there's enough in the vials for more than one use. I used to have to do the warm compress thing with my eyes quite often until a few years ago. Heat a damp washcloth in the microwave for 10 seconds (not
too hot!) and hold that across your eyes. Keep warming up the washcloth, because you'll need to do this for 5-7 minutes. Then, with your finger, stroke along the upper lid, starting near your nose. That's where the oil glands are located and the warmth helps stimulate more of it. Our tears have three layers: one watery, one mucous-like, and one oily. My old opthalmologist said just think of salad dressing!
My eyes, mouth, and joints/muscles bother me very little now, but it took a number of years of treatment to get to this point. As I said before, I've been on Plaquenil (the generic) since Nov. 2001 and it took over 4 months to see any improvement; some patients say it takes 6-7 months -- it's a slow process. I also misspoke when I said Plaquenil is an immunosuppressant. It's a DMARD (disease-modifying anti-rheumatic drug) that is used for malaria, but they discovered it works well for Rheumatoid Arthritis, SjS, and other autoimmune problems.
My husband and I have lived in the San Francisco Bay Area for 36 years now; I lucked out in getting an excellent rheumy at Kaiser, our HMO. I was tentatively diagnosed within 7 weeks of first seeing a dr. because of my first weird symptoms: felt like something was biting me all up and down my legs. With an HMO, you have a primary dr., but can see anyone if your primary is booked up. That's what happened to me: 4 times I saw a different GP and most of them ran different tests that all came back normal. I would call back after getting the results and say there was still something wrong and I needed to see someone. The 4th dr. looked at all the test results and listened to me describe my symptoms. I also remembered to tell him my brother had had an autoimmune problem -- not SjS, but autoimmune problems often seem to run in families. He decided I needed to see a rheumy and 3 weeks later, I did.
It was during that 3-week period that my tongue started sticking to the roof of my mouth. When I saw the rheumy, one of the things he asked was whether I could eat a cracker without drinking. I said no, not lately. He reviewed my symptoms, tentatively diagnosed SjS and said to come back in 3 months and if my mouth was still dry, he'd order a lip biopsy. Three months is the typical period I've read they wait to check if dry mouth symptoms remain, since so many things can cause dry mouth. He said I could start on Plaquenil, but I preferred waiting until we got the results of the lip biopsy. He scheduled it after my second visit and the biopsy was positive for Sjs when the results came back. So I started on Plaquenil. I get my eyes checked annually by an opthalmologist; one of the side effects of Plaquenil, though rare, is that it can affect your color vision. When I first asked my rheumy about possible side effects, he said, "You'd stop being able to see red." Then he added that discontinuing the Plaquenil usually reverses side effects.
Unfortunately, SjS is v. difficult to Dx because not everybody gets all the same symptoms, My SSA, SSB, and ANA blood work all came back normal, as it does for many of us. Not every rheumy is willing to treat you for SjS in such instances. Some SjS patients undergo lip biopsies that don't show infiltration of the salivary glands and, again, their rheumy won't treat them for SjS.
I've done a lot of reading about SjS and a good friend is a medical librarian; from time to time she brings me articles on SjS from recent medical journals. There are also some useful books; the older edition of the New Sjogren's Syndrome Foundation handbook is better than the newer edition, in my opinion, because is has tips to help make daily living comfortable. It's available on the Sjogren's Syndrome Foundation website as is a small one with a green cover (can't remember the name) that I think is helpful; it was written by a SjS patient, as I recall.
SjS is a collection of symptoms, some of which can be v. serious. I'm fortunate that mine aren't severe. That's why my rheumy has had me taking several OTC supplements; my symptoms, so far, are controllable without too many drugs. It still bugs me at times -- a chronic condition like this means you have to deal with it day in and day out, month after month. But I've gotten used to the routine now.
Oh, I use Biotene toothpaste and ACT mouthwash with fluoride per my dentist's instructions. Look for mouthwash without alcohol if you can't find the ACT brand, because alcohol dries out your mouth. I also buy OralBalance, which is a gel made by Biotene. It comes in a small toothpaste-style tube and I use it one or twice when I wake up at night with a dry mouth -- I'm a mouth breather. But my tongue quit sticking to the roof of my mouth ages ago after taking Plaquenil. I drink decaf and avoid liquor most of the time because caffeine and alcohol both make your mouth dry.
There's more I could tell you, but I'm getting writer's cramp!
Take care,
Prairie gal
