Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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  • dmp58

    Does anyone use Plaquenil ?

    1
    I started generic plaquenil mid-may. I feel good but wonder if I will be able to cut the dose from 200 mg. twice a day and how long I have to be on it. Or if i can just take it when neccesary. My doctor is in the process of being absorbed into another medical group and is hard to reach for now.
  • Kk39

    Newly Diagnosed..with a few questions.

    0
    Just wondering what other AutoImmune things others are living with.  I have had Myasthenia Gravis, for 20+years, Hypothyroid for close to 10 and this is my newest addition to my very naughty immune system.  About 2 years ago I was also diagnosed with a lession on my spinal cord T4-T5 area.  No body feels that this is related to anything thus far, but it causes me LOTS of pain and has been...
  • Renee1229

    Newbie with a question

    1
    I've had SS for a few years now and it's progressively getting worse. Does anyone experience extreme pain. The most recent flare went like this. Needles everywhere takes 2 days to go away, then low grade fever, then parotid pain on both sides, then sheer pain all over it's hard to take a deep breath.. cold, clammy, nausea, dizziness, and headache. Does any of this sound familiar to you?
  • Stefunny25

    Beginner

    3
    I recently got diagnosed with Sjogrens a few weeks ago, after a whole year of constant complaints of pain and fatigue. I also developed Piriformis Syndrome that has given me terrible sciatic pain. (still not sure if that's related). Im 25 yo so this all came as a shock to me. I have been reading everyone's posts and i'm feelin goptimistic that once i start taking Plaquenil that things will get...
  • maizeemae

    Sjogrens and Skin Itching

    5
    I was diagnosed with Sjogrens in 2014.  The main itching on my arms are driving me nuts.  They prescribed a steroid for it and it ended up really thinning the skin on my arms.  I have some luck with wiping the area with a unscented baby wipe, then applying like a Benadryl Cream.  When it is extreme Bath and Body has a sugar scrub with Jasmine and Vanilla and that also buys me some time to...
  • mseaton

    vaginal dryness

    I have a sore mouth and tongue due to saliva reduction but now I am suffering with vaginal dryness and the outer areas are very dry and sensitive. I have tried topical solutions but even those for sensitive skin are irritating.
  • gypsyfi

    dont understand ss and slightly frightened.....

    3
    Hi, So I was diagnosed with SS about 9 years ago, it's never really affected my life apart from needing eye drops. Ive been able to feel the lymph nodes in my nech and under my arms for many years and this freaks me out as I get really worried about serious illness. My ESR marker is raised but my doctor says thats nothing to worry about, I dont have a specialist but my GP has always said being...
  • deleted_user

    Extreme salty taste in mouth

    This is my first post - I finally got a diagnosis of Sjogren's - have had symptoms since 2008. Started with dry mouth, dry eyes, then complete loss of taste for over year with accompanying 80 pound weight loss, then chemical/sour taste, now since about November of 2012, all I taste is salt - EVERYTHING I eat tastes like I've poured tablespoons of salt over it. I also have sores inside my bottom...
  • WarriorGal

    Extreme Severe Flare-up

    I was diagnosed with SS in 2009. Symptoms have been managed well with Evoxac for mouth dryness, Restasis and tear duct plus for eye dryness.I currently seem to be in a really really bad flare up. I never knew a mouth and throat could get and stay this dry. There is not enough lozenges or gum or drinking water to prevent my lips from sticking to my mouth and being unable to talk.It's beyond...
  • deleted_user

    Coronary Artery Disease

    4
    Would anyone know if sjs can cause artery disease or at least play a role in it? I know that sjs can cause vasculitis which is an inflammation of the arteries and vessels, but don't know if it can cause CAD.My guess is most doctors would say NO!! However, Diabetes can cause vasculitis and diabetics are at a higher risk for CAD.Just wondering. I seem to have something wrong with an artery...
  • WarriorGal

    Dry Eye & Migraine

    1
    I get migraines and ocular or vicual migraines.  Found this:"An increased frequency of dry eye disease was found to occur in patients with migraine, which might suggest that migraine headaches are related to dry eye disease. Some migraine attacks may be aggravated in the presence of dry eye syndrome."http://www.ncbi.nlm.nih.gov/pubmed/22710496Another:"In one 2012 study in Cornea, of 33...
  • artwithin

    fighting fatigue

    7
    Not sure what is going on,but the last say 5-6 wks major fatigue. I have been doing really well for the past 2 yrs but recently I have been battling major fatigue. I have headaches that are at the top of my head whenever I cough and when i get up in the morning.after that the headaches are pretty much gone unless I cough. I recently retired from my job just in time because of the fatigue I...
  • angiern2010

    I dont want to hear it

    7
    Hello all! I recently went to Mayo Clinic, Jacksonville and found a wonderful rheumatologist. It was very well worth the trip just in case anyone else is considering going. But that really is not what this post...or maybe rant...is about. I have two best friends. I have been friends with each of them for over 20 years. Neither live near me but I usually manage to see them a couple of times a...
  • edeebee

    Sjogren's specialist

    5
    Just returned from an appointment with my general practitioner.  Between my Opthamologist, Rheumatologist and GP they have conferred and recommend that I see a Sjogren's specialist at the University of Pennsylvania.  I have chronic uveities, have already had cataract surgery and lens implants.  I have permanent tear duct implants in both eyes (couldn't believe how much they helped!)  Now I...
  • deleted_user

    Shrinking eye????????

    DugEB View More Posts Can anybody back up the fact that a shrinking eye happens with Sjogren's. I don't know why, but I am having problems with the doctors believing this one. My eye in the morning and late at night will now barely stay open. I also get a lot of tearing up in that eye, along with having that feeling that it will be falling into my eye socket if not taking care of.