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Sjögrens ( Flares & remission)

Posted , 7 users are following.

chris39732
chris39732

Hi again all. Plenty of questions coming up all the time on this.

For me really the dry mouth is the worst thing. Everything else i can live with. What i was curious about and did read a bit about it somewhere on this site was relating to flares and remission. We are all different so hard or dumb to maybe ask this. But as i have fibro, which does not bug me too much i know all too well about flares. So they come and go. Now with dry mouth. Is this something that also comes and goes so is it a bit like a flare symptom? Or is it something that generally once it comes, stays? This all started for me in July this year and the dry mouth just got worse from that point on. Have hard time believing saliva can just become normal again at this point. God do i ever miss it! Thanks all for any comments.

1 like, 10 replies

10 Replies

  • amkoffee
    amkoffee chris39732

    Posted

    My mouth had been dry for years. I take a medication that helps my mouth produce saliva. Without it I have trouble eating.

    As for the SS going into remission, I've never heard that before. I've had it for many years and it hasn't changed since it started.

    • chris39732
      chris39732 amkoffee

      Posted

      Thank you A for this. Are you on this Pilocarpine?I guess they have a few names for it?

      Does it really work? RIght now i really need something for the pain im in. Like i have about 10 days to go before i get results from lip biopsy. However whatever the results it will not help the fact that my mouth, namely tongue is very very sore.

      Are you able to clarify one issue as im confused. Burning Mouth Syndrome. Is that basically for people who have otherwise no issues with Dry mouth and its completely just un-related? Like my mouth burns. I think its more my tongue. Its really hard to specifically say where but seems to be the edges of my tongue. The thing is that my hunch is that this comes from talking. And with a dry mouth, less saliva i think this is why i have this pain.

      Does that make sense?

      Never had any issues in my life before until i got the dry mouth.Thats when i started getting this pain. Thanks A!

    • amkoffee
      amkoffee chris39732

      Posted

      The pilocarpine unset my stomach so I now take cevimeline. My rheumatologist prescribed 3 a day but I only need 2 per day.

      You'll get better info by Googling burning mouth syndrome then what I can tell you. But I've heard from others that the burning can be anywhere in your mouth.

    • chris39732
      chris39732 amkoffee

      Posted

      Thank you Am for your reply once again. Appreciate it!

  • lily65668
    lily65668 chris39732

    Posted

    Hi Chris,

    There don't seem to be any fixed rules for SS, it varies from one person to the next. In my own case, my mouth dryness comes and goes. Over time since first symptoms (24 years) it doesn't seem to be getting any worse, and my teeth haven't been damaged, apart from the usual age-related gum shrinkage. (I'm 75.) Annoyingly, my blood results for salivary-gland antibodies tend always to be high when I have no mouth dryness, and low when it's a problem - but that's SS for you!

  • chris39732
    chris39732

    Posted

    Thx very much once again for taking the time to write me =)

  • donna6284
    donna6284 chris39732

    Posted

    Hi there! I was diagnosed with Lupus and Sjogren's many years ago. All my symptoms were gone or managed such as my dry eyes with Restasis.

    In August of this year I started having dry mouth and symptoms of Raynauld's Syndrome. In October my doctor prescribed Cevimeline 3 times a day, but I'm not sure it's even working. The mouth dryness is the worst. My taste is off and I've lost my sense of smell. I use these tablets that stick to the roof of my mouth throughout the day and makes my mouth feel bearable. Otherwise I feel miserable. It's strange how "sick" I can feel with the dry mouth especially if I'm overly tired. I keep hoping it will go away.

  • amkoffee
    amkoffee chris39732

    Posted

    I take that and it works great for me. Have you started any other med? Some meds can cause dry mouth.

  • diane73605
    diane73605 chris39732

    Posted

    i need something that helps the throat as driving me mad keep clearing it & mucus getting stuck & my throat feels rough as toast annoying me senseless got natural

    saliva drops but that only does the mouth any ideas or advice on the throat plz ?

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