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Dry mouth

Posted , 3 users are following.

jacqueline00180
jacqueline00180

I have had a dry mouth now for over two month dry eyes dry sinuses dry throat thrush despite a good oral routine  I am a new lady with all the symptoms of Sjögren's I see a rhumatologist in two weeks though I must say I am dreading it as I know how difficult Sjögren's is to diagnose I had a neg blood test already with an abnormal liver reading which I see gp next week to discuss  I have inflammatory arthritis in the neck with oestiarthrits in both hands knee and hip hair falling out brain fog tiredness blurry eyes anxiety pins needles the list goes on but it's the mouth that drives me mad glands up under the neck the thrush isn't helping  I know I have been given daktarin oral gell but no mater what I use nothing seems to help I think the thrush gell makes the mouth dry to which I'll mention when I go but any ideas I already use Biotene gell Biotene mouthwash which helps a bit but my gums are dry i chew gum sugar free sweets sip water all day I hate the word Sjögren's and I feel for you all but admire how positive you all are despite this awful syndrome 

1 like, 9 replies

9 Replies

  • lily65668
    lily65668 jacqueline00180

    Posted

    Hi Jacqueline,

    So sorry to hear about all your awful symptoms. Some of us are lucky and get let down more lightly by the condition than others. You've obviously been dealt a very bad hand.

    That being said, my symptoms were much worse in the early days - 22 years ago - than they are today in general. Some of us find we have the disease all the time, but others find it goes in flare-ups and remissions. I had a six-year remission until a year or so ago. By that, I don't mean all my symptoms disappeared completely, but they were quite minor and entirely manageable during that time. Then, just over a year ago, I went into one of the worst flare-ups I'd ever had. This lasted a year, then the symptoms disappeared once again about four months ago.

    The hair loss, brain fog and general tiredness sounds like an under-active thyroid. That happens to a lot of us. Make sure the rheumatologist adds thyroid function on the blood test. This is the one bit of the condition that's easy to treat - you just pop a pill of synthetic thyroid hormone every morning (for the rest of your life, of course) and the hair loss, brain fog and constipation get better. Unfortunately, it's rare to re-grow hair that's already been lost, but at least you don't lose any more.

    If the Daktarin gel isn't working, your doctor should put you on systemic anti-fungals. Ask the rheumatologist about this too. I've had a couple of courses of these in the past. You have to take the tablets for about six weeks. It won't help with the dryness but it will eventually clear up the thrush, for a while at least.

    I know just how horrible it is when your lips keep sticking to your gums. I got deep cracks at either side of my mouth too, that opened up and bled every time I opened my mouth to eat. But I was lucky. The extremely dry mouth, which was the first SS symptom I ever had, cleared up spontaneously (well, more or less) after about 6 months to a year. Only to be replaced by peripheral neuropathy, dry eyes etc. but that's the way it is with me - the symptoms wander around my body over the years so I rarely have more than two symptoms at any one time.

    Try and stay upbeat, as your state of mind is very important in auto-immune conditions.

    • jacqueline00180
      jacqueline00180 lily65668

      Posted

      Hi lily thank you for getting back to me and it is nice to see that 22 years of suffering from this you sound positive I am takin notes for when I see the rhum in two weeks time it is all new and I have no idea what I am dealing with I love this site and finding it very useful I wish you all the best thank you again 
  • sally83545
    sally83545 jacqueline00180

    Posted

    Hi Jacqueline,

    Ask your doctor about SSB and SSA tests. These are the tests for Sjogrens specifically (my understanding). I had the exact same symptoms you talk about including loosing alot of hair. My doctor started me on 400 mgs. of Hydroxychloroquine (Plaquenil) which seems to be the "go to drug." Takes about six months to see the full benefit. Wow! I am a new person and my hair stopped falling out and is getting back to normal. My dryness has improved...but it was not at severe as yours... Don't despair, there is no cure for Sjogrens but the symptoms can be controlled and you can feel good again. Also, about the arthritis, I found out it mine is Lupus Artritis and I started taking Methotrexate which although the side effects can be rough for some, has also greatly improved the quality of my life and decreased the constant pain. Don't forget you can ask anything on this site, I have learned so much! 

    Good luck and feel better,

    Sally

     

    • jacqueline00180
      jacqueline00180 sally83545

      Posted

      hi Sally thank you for the advice it is really appreciated as I have no idea what I am dealing with I am writing notes down for when I see the rhum in two weeks time all these things are new and dealing with isn't easy I have found this site very helpful thank you again all the best
    • jacqueline00180
      jacqueline00180

      Posted

      Sally I Just wanted to add I am glad you have found medication to give you a better quality of life I am so pleased this has helped as I know how difficult it can be to treat all the best jakk
  • heather72469
    heather72469 jacqueline00180

    Posted

    My ent referred me for a ct of sinus it came back no sinus prob and she said my symptoms might be ss but nothing they can do for it I could accept it if I jus knew that was the prob, dry mouth sore cheeks, should I ask for a blood test or do they normally come back neg I really don't know how you all know it is ss
    • lily65668
      lily65668 heather72469

      Posted

      Hi Heather,

      There've been reams of correspondence in these forums on the difficulty of diagnosing SS. Some people get a diagnosis from lip biopsy which, as I understand it, is the only definitive way of diagnosing the condition. I have, however, heard of people getting negatives from that too, but still clearly suffering from SS. There are also various kinds of blood tests involving inflammation markers and specific antibodies. In my case, I finally got diagnosed when anti-salivary gland antibodies were found on a blood test. But they disappeared soon after that and have never been found since!

      I'm afraid that's just how it goes with SS. Make sure that when you see the rheumatologist you describe all your other symptoms, and don't let him fixate just on your joint problems. Normally rheumatologists have the final say on SS, and should be knowledgeable about the non-rheumatic symptoms too. (Though I know they aren't always.)

      Work on managing your dry mouth for the moment, and see if your GP will prescribe systemic antifungals for the thrush. And don't despair. Many of us find SS symptoms come and go - though they rarely clear up altogether. I only really had mouth problems for the first 6-12 months, and have never had severe problems in that department since. But that doesn't mean I never will, of course. Dry mouth was my first SS symptom. After it cleared up the disease branched out into other parts of my body but spared my mouth.

  • sally83545
    sally83545 jacqueline00180

    Posted

    Hi Heather,

    The  test that I asked for specifically, that finally uncovered my autoimmune issues is called ANA it stands for Anti-Nuclear-Antibody test (research online).

    A girl at work told me about it, her father had Lupus. My GP ordered the test, it showed positive. I then was referred to a Rhuematologist who ran several more tests including SSA and SSB he said these were for Sjogrens specifically.

    The ANA is the one that will show the docs something autoimmune is going on.During 8 years of trying to get diagnosed no one had ever ordered an ANA .

    I actually insisted upon it myself! Moral of the story, "Don't be shy!"

    Good luck and feel better,

    Sally

  • heather72469
    heather72469 jacqueline00180

    Posted

    Thank you for your advice I have an appointment with my diabetic doctor and I will ask for this test ANA just to put my mind at rest because I have searched all kind of reasons for the dry mouth, it is not meds cos am only on BP meds and have been on them for some time, I also take meds for GERD but I am sure these don't have an effect.
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