JUST DIAGNOSED WITH SJOGREN'S SYNDROME AND HAVING MANY PROBLEMS. CAN OTHERS TELL ME HOW YOU ARE COPING AND WHAT MEDS YOU TAKE?
I was dx'ed with "Dry eye" from an eye doctor and when I told my RD about it he said "Yeah, Sjogren's" pretty much blew it off....but then again I haven't had too much problem except my eyes; and another doctor was treating that.
To my knowledge he hasn't actually tested me for it. I think he's just assuming it. I do have eye problems. Inflamation in my eyes that can be quite bothersome, and dry skin and mouth at times. It's not been too bad except the eye stuff.
Over the counter drops is all I take Karen. There are medications out there; but mine hasn't gotten to the point where I want....or need another medication.
My doctor didn't actually say I had Sjogren's, but like Lovie's doctor, mine said "dry eye" and possibly inflamation in my eyes. I had already been told to use artificial tears, but he also gave me Voltaren Ophtha. I haven't used these drops yet, thought I'd wait and ask my RA doc when I see her.(the drops were given to me by my family doc) I also have dry mouth and skin, but it's my eyes that seem to really bother me.
Kelly
I went to the eye doctor when I started having so problems. I would never have even thought it was "Dry Eye" because they didn't feel "Dry". In fact my eyes seemed to water more than normal; and were often painful and red. Sun light has become hard to bare without sunglasses....and often I'd have this random cloudyness; almost a film that came over them; that's was my main concern.
They did this little test where they put a tiny little strip of paper on them and you have to sit in the dark for like five minutes (The longest 5 minutes I can remember) and then they take it off and check to see what the tear production is. In "dry eye" one of your tear ducks over produces and the one that's actually supposed to lubrecate the eyes under produces.
I'm probable not explaining it right; but you'll need an eye doctor to dignosis that. Even the over the counter natural tears really do help.
LOVIE, YEA, THE OPTHAMOLOGIST DID THAT TEST ON ME, CALLED A SCHRIMMER TEST OR SOMETHING LIKE THAT PLUS SOME DYE TO CHECK FOR ULCERATION. MINE WAS BAD. I HAVE CORNEA ULCERATION AND HE PUT ME ON STEROID DROPS, INFLAMASE, FOR A WEEK TO HEAL THE DAMAGE, RESTASIS TWICE A DAY FOR LIFE, SYSTANE EVERY FEW HOURS A DAY AND LACRI LUBE AN OINTMENT KEEP EYES LUBRICATED AT BEDTIME. I ALSO HAVE TO SEE A SURGEON TO GET A LIP BIOPSY, X RAY OF SALVARY GLANDS AND A COUPLE OF OTHER TEST. I FEEL NEARLY BLIND. HAVING TO WEAR SUNGLASSES DUE TO LIGHT SENSITIVITY AND CAN ONLY OPEN MY EYES ABOUT AN 1/8 INCH DUE TO PAIN. ANYONE HAVING DRY EYE AND DRY MOUTH DON'T WAIT AROUND! SEE AN OPTHAMOLOGIST RIGHT AWAY. IF YOU HAVE RA AND SJOGREN'S IT'S CALLED SECONDARY SJOGREN'S AND EFFECTS MANY ORGANS! GONNA HAVE TO TAKE A PILL THINK CALLED EVOLOX FOR MOUTH AND HAVE TO ADD A DMARD AND POSSIBLY TAKE LOW DOSE PREDNISONE. OH BROTHER.......MORE AUTOIMMUNE FUN!Gracious Karen; I'm sorry to hear of your troubles.
Have you not been on a DMARD all this time for you RA?
yes, Sulfasalazine, but now they say i need another to "control" the Sjolgren's damage. Possibly low dose methotrexate again. Waiting for my next appt. What are you on Lovie?Karen I take MTX & Humira and its the best combination of meds I've ever been on.
I took Sulfersalizine years ago and did pretty well....after a while we added plaqinel and after years with that combo I switched to MTX. About three years of that we added Humira.
Sorry to be such an airhead....I see now all of your meds in your signature line. Duh.
My eyes aren't as bad, but I'm having a real issue with vaginal dryness. I'm using Replens for that, and it's helping, but its bad.
What is confusing is that some days I have no problems, other days I can't eat because there is no saliva..is this typical?
Hey Karen,
I was diagnosed about 3 years ago with Sjogren's based on that tear test at the ophthamologist's. It is a test called Schirmer, I believe, and I "flunked" the test erally bad. Like you I had corneal problems...mine were scratched on one eye only so he inserted a punctal plug in that eye's tear duct. It is still there 3 years later...and I am not even aware of it. I use the Evoxac and it is wonderful. The insert says it is for dry mouth, but I have discovered it helps my eyes, too. I use far less "tears" when I am diligent about my Evoxac. I also use Plaquenil for the RA and for the SS and I swear it too helps so much. When I am off meds, I wake up in the AM and my mouth is so very dry. I also notice that I don't sweat with SS, but taking the Evoxac has restored this. I still don't sweat a lot, but more so while taking meds. It cools the body so that is a good thing.
Why a lip biopsy? I asked if I had to have one, and they said "no" because the Schirmer test identified the dry eye and if my mouth felt dry (and it did/does), why put yourself thru that? (You mention that you could not eat without saliva...that is a fact. You really need saliva to be able to swallow....I had forgotten this feature...)
Take care...write anytime.
Molly Bee
Hi Karen,
The Evoxac was prescribed by my previous rheumy but the current one is continuing to prescribe it. The eye doc told me I had "dry eye syndrome" but the rheumy said it was "secondary to my RA and was Sjogren's"...
Good luck tomorrow with the ENT. I think Plaquenil is also extremely helpful with the Sjogren's. Not sure why, but it sure is.
Molly Bee