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Sjogrens Syndrome and I.C.

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  • Sjogrens Syndrome and I.C.

    I belong to the Sjogens World Forum and I've leaned that 50% of people with Sjogrens also have I.C. Sjs is an autoimmune diease, and I believe that I.C. is also autoimmune. This is where the body attacks itself!!!

    Sjogrens Syndrome presents with dry eye, dry mouth, nose(and can affect vaginal moisture) and can affect the joints and other systems.

    I'm sero-negative (it doesn't show up in my bloodwork) but I have the dryness symptoms( luckily not vaginal though)

    I can't take Ditropan as it's too drying and causes me neurological symptoms, so my GynUro had given me a script for Vesicare, in case I need it. I haven't tried it yet...

    Cheers,
    Lesley (NZ)

  • #2
    what kind of neurological symptoms were you having with the ditropan? I think I am having symptoms with Lexapro.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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    • #3
      Lexapro

      Hi Teresa, I think that Lexapro is an SSI or SNRI antidepressant and I can't take any of those!! Have you Googled to see what the side effects Lexapro can cause?

      The symptoms I had from the Ditropan were anxiety (and my system was sped up) plus peripheral neuropathy on my arm and leg (like there was a stocking on each)!!


      Good luck with it,
      Lesley

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      • #4
        Hi,
        I have both IC and sjogrens too!
        I think it has affected my nervous system and joints as well.
        I just restarted plaquenil, does anyone take this for autoimmune
        problems? I had stopped it because I thought at first it was contributing
        to my weird tingling, vibrating, twitchy muscle issues. Not the case,
        it was still going on even off the plaquenil and flares just like IC.
        I would love to hear more input from people with both!
        I knew there was a connection, not just this high.
        Holly
        49 year old SAHM with 4 great girls and hubby.

        Symptoms started 1/09.
        Officially diagnosed 4/09.
        Symptoms are totally pain, very little frequency.
        Diagnosed with Sjogrens 9/09
        Diagnosed with mild gastritis, GERD. Chronic Heartburn

        Current Meds.
        Quit Elmiron after 4 yrs
        Previousy had instills 6/09-2/10 and a few after that
        Started PT 12/09 - a great help too!
        IC Diet - an unfortunate must!
        Plaquenil (for Sjogrens)
        Prilosec
        Iron pills as tolerated due to iron deficiency

        Doing much better than my first year of diagnosis, but still have to carefully watch my diet if I want to stay out of pain.

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        • #5
          Hi Holly

          I'd think that plaquinel would be good for the IC as it's an immuno- suppressant drug and could stop the bladder attacking itself. It's the mainstay for autoimmune diseases like Sjogrens and Lupus (which are cousins).

          I'm not on plaquinel yet, I've sero-negaive bloodwork but my rhumy says that you can have neg bloodwork and still have Sjs. I'm seeing him in May to see if I can start Plaquinel. I've heard that it can help IC.

          I have a mixture of mild/mod pain and frequency! I was recently diagnosed with moderately severe IC, but luckily I haven't had much pain. I had a flare 15 years ago but it cleared up with Ditropn. Can't take that now, so the Gyne/Uro has started me on 5mgs(low dose) of Vesicare. I'm doing a 10 day trail and just started today...no side effects so far, although maybe my urine flow is down a bit...

          Good luck with restarting the plaq. Do you know it takes up to 4 months to get the full effect of it, so worth staying on it. Don't forget to get your eyes checked when you're on this drug.

          Cheers,
          Lesley (New Zealand)

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          • #6
            dry eyes help!!

            I hope that somebody (or two) can give me their opinion. My IC is pretty well maintained for the most part. I have the Interstim implant. My problem is extreme dry eyes. My tear ducts were sewn shut about a year ago. I know sounds kind of weird. It is the same thing as when they put the plugs in your tearduct to keep any tears that you do produce on the eye. All of a sudden a few weeks ago, on the left most outer portion of my eye I have severe pain. It is like a stabbing. It is just in that particulr area. My ophthomolgist had me on some oral intibiotic but that didn't help at all. Does anybody else have this severe of a dry eye? They did the blood test for Sjorgens but it was negative. Could I still have Sjorgens?
            Also, can you give me your oprinion on Wellbutrin. I don't see that it causes dryness in the eye. Plus, I have been on that for a long time. It is time for me to refill my prescription for 3 months. Since my insurance is not great, I am going to have to pay $1,031 for it. Evidently, I don't want to get it if I can't keep using it.

            Thanks for any help you can give me.

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