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Looking for members diagnosed with Sjogrens

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  • Looking for members diagnosed with Sjogrens

    My doctor suspects that I have Sjogren's disorder. Mayo clinic article states that "in 2003 28% of people with IC had Sjogrens".
    Can members with Sjogren's reply and tell me about your symptoms, how it has affected you, and treatments?
    Thank you,
    Marcie
    Diagnosed in June 2008. Symptoms began in 1998.
    Also diagnosed with Sjogrens, APLS, IBS, & GERD.
    Medications:
    Elmiron 400 mg, Protonix 40 mg, Tramadol 25 mg, Plaquenil 200mg, iron, Vitamin D 100 IC , Calcium 2 tablets, Fish Oil 2 tablets, Claritin, Biotin, Pro-biotic, & restastis eye drops.
    It took a year for the Elmiron to work, but it has really made my life with IC bearable.

  • #2
    Hi Marcie,

    I hate responding when I can't help, but I got a call from my rheumatologist last week that I have Sjogren's. After seeing 2 allergists over the past 5 years and getting no help for my dry itchy eyes I decided to get tested. My opthalmologist did the Schirmer's test and I think the other test with the colored dye last December and said I'm borderline allergies/dry eye. I continued using Pataday and Naphcon but these didn't stop me from waking up every morning feeling like I have to peel my lids off my eyes.

    Anyhow, I'm not sure what test was indicative but I presume it's the ANA and my result was 1.1. The other tests were normal, so from what I've read I think that means I don't have SS-A and SS-B. Do you know your test results? What are your symptoms?

    I don't have my follow up appointment for another 6 weeks so this is pretty much making me crazy. I'm only 34 and have 2 young children. I really didn't picture my life going this way - it stinks.

    Hope to hear from you and from others who have advice.

    Comment


    • #3
      Sjogren's Syndrome

      I was diagnosed with Sjogren's Syndrome about 8 years ago. My Rheumy did blood work but all it all came back ok. He actually made his diagnosis just by looking at my eyes and mouth, and at that time my mouth was also burning.

      He put me on Plaquenil for the sjogrens and sent me to an eye doctor who put me on restasis eye drops. Those two things made a bid difference in my eyes but it takes about 6 months for both of them to work.

      I also have joint pain and muscle pain that goes with the arthritis that comes along with Sjogren's.

      Comment


      • #4
        I'm the same as twinsister. I produce no natural lubricating tears in my eyes which always stuns the eye docs. That paper test is hysterical. I also have moments of extreme dry mouth though not consistently, usually if I'm going off a medication. I wake up atleast twice a night not for my bladder but for my very dry eyes. I use TEARS NATURALE very successfully... I don't do the thicker drops well at all. The ductal plugs didn't do anything for me at all. For the dry mouth if it gets bad, I use the Biotene Dry Mouth Moisturizer that we have in the ICN Shop at: http://www.icnsales.com/dry-mouth_products/

        You are definitely not alone. Oh... and my doc said "yes, I'm fairly sure you have SS but I'm not going to do the biopsy on you." I don't have joint pain that I can tell. It's really the eyes and the mouth that are the problem.
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






        Comment


        • #5
          Jill, are you also on Plaquenil? I started taking it last Thursday. I am nervous about the possible effects it can have on vision, although I have read that is not a common occurrence. My doc says it's reversible anyway, but the literature out there says the opposite. I'm not sure what to think.

          Twinster, does the Plaquenil help your eyes or the Restasis? I'll see my opthalmologist Tuesday to get a baseline exam for my eyes for the Plaquenil. I was going to ask about Restasis.

          How have your problems with Sjogren's affected you on a long term basis? I'm 34 with 2 young children so I had a hard week after getting my diagnosis. I'm doing a little better now with the realization that this may be uncomfortable but I don't have to be the worst case scenario patient and I should just cross that bridge when I get to it....but that said, I have (cross my fingers) a lot of years left on this earth and the thought of living them in pain is not very appealing!!! I guess I keep wondering how long it takes to deteriorate. I have been experiencing problems with my eyes for about 5 years and only in the past few weeks did I finally push towards finding an answer because it was driving me nuts. Any info you could share about your experience would be helpful. Thanks!!!

          Comment


          • #6
            Sjogren's Syndrome

            I would say the Plaquenil and the Restasis both have helped me with my dry eyes and dry mouth. It is not a quick fix, they say give them both 6 months to see improvement. I know there are people who see improvement before that I'm just saying don't give up on them.

            When I first was diagnosed I was so worried about my future, how would I take care of my family? The not knowing was scary for me. But I will tell you that my sjogren's is much better than it was before my meds. I take atarax and valium for my Interstitial Cystitis and both of those meds cause some dryness and they would like for me to take Elavil also but on top of the other things it just made me to dry. I try to stay away from really salty things but this weekend had a handful of Fritos so I am a littler dryer.

            Just text me anytime, Its always good to talk to people who are going thru the same types of things.

            Terri

            Comment


            • #7
              Thanks to everyone for your responses!
              I was on Plaquenil for about 4 months and the joint pain and fatigue got a lot better, BUT my hair started thinning very badly and it bothered my stomach. I also found out that my vitamin D was low so now that I have the D levels back up I am going to try the Plaquenil again.
              I tested negative for the bloodwork for Sjogren's, but did not have lip biopsy. I do know someone who had lip biospy and it was a little more than she expected (4 stitches and a lot of swelling).
              Thanks again for replying!
              Diagnosed in June 2008. Symptoms began in 1998.
              Also diagnosed with Sjogrens, APLS, IBS, & GERD.
              Medications:
              Elmiron 400 mg, Protonix 40 mg, Tramadol 25 mg, Plaquenil 200mg, iron, Vitamin D 100 IC , Calcium 2 tablets, Fish Oil 2 tablets, Claritin, Biotin, Pro-biotic, & restastis eye drops.
              It took a year for the Elmiron to work, but it has really made my life with IC bearable.

              Comment


              • #8
                Oh no, hair thinning? I was just thinking more hair is coming out than normal the past few days.....yikes. Did this improve when you quit? Twinsister and Jill, any experience with this symptom? I don't have a thick head of hair to begin with.....I definitely don't need thinner hair. It's always something!!!

                But I have to say even after 2 days the Restasis makes my eyes less irritated.

                As far as the blood test goes, I tested negative in February 2009 for ANA, SSA and SSB. This past month I tested 1.1 for SSB and the cutoff is 1.0 to be considered positive. My rheumy told me I was probably hovering around 1 for awhile and something finally pushed me over the mark. Honestly it's better off because at least now that I know for sure I can attempt to treat it. If my hair doesn't start falling out!!!

                Thanks, ladies. Keep me posted.

                Comment


                • #9
                  Sjogren's

                  I do remember when I first started taking it some hair loss, but it stopped afer a bit.

                  Comment

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