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New to SS - long term outlook and meds?

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  • New to SS - long term outlook and meds?

    Hi everyone,

    I apparently tested negative for ANA and SS-A but am positive for SS-B. I am going to see my rheumatologist tomorrow because I can't wait another 6 weeks for my follow up visit. I am really scared. I have urethral syndrome so far so I was not completely surprised to find out I have SS. Honestly, I believe that the leukocytes attacking my salivary glands and tear ducts are probably similar to something attacking the lining in my urethra. Why wouldn't that be the case?

    Anyway, would those of you who've had SS for awhile please tell me what the outlook is like long term? I've read it's progressive and I'm only 34 so that has me realy depressed. My doctor wants to put me on Plaquenil but I'm concerned - if this is an immunosuppresant then can't this leave me more susceptible to getting sick? Not to mention what sounds like some wicked side effects?

    Also, did your symptoms deteriorate over time and did you notice more symptoms? I started having problems with itchy/dry eyes about 5 years ago. It's gotten to the point where I hate waking up in the morning because my lids stick to my eyes. My mouth has been drying out, too, over the past 6-8 months getting much worse over the past 2. Does anyone else have itchy eyes too?