Need info from members with Sjogrens

Discussion in 'Fibromyalgia Main Forum' started by tandy, Aug 29, 2006.

  1. tandy

    tandy New Member

    Hi guys~

    I just started having really bad dry mouth about 4 months ago now. Seems to be getting worse week by week.
    I just hate that feeling of no saliva in my mouth!!
    One question: (I'm not DX yet. I just suspect sjogrens)

    From being dry does your mouth and or tongue feel irritated??
    Mine does. Its not painful,its just sore,does'nt feel right. I tried that biotene mouthwash and that helps but not for long.

    I've recently been told I have tons of dental work needed to. I have like 8 teeth that need fixin due to cavities.
    I've recently learned thru research that this is also common in Sjogrens.??
    Is there anything that helps this dryness? OTC
    I see my Rhuemy on Oct. 5th.

    So far my eyes don't seem bad. Once in awhile they feel dry or itchy but I thought it was allergys?
    I'm just puttin 2 and 2 together and thinking I may have
    Oh,.. and how is this name pronounced!!??? LOL
    Is there a bloodtest for this disease?

    Thanks for helping~
  2. mymichelina

    mymichelina New Member

    I pronounce it So grins...but I am not sure if that is correct or not. I have it based on symptoms, I never had the eye paper test that can be done, where I guess a special paper is held in the corner of your eye to see how much it tears. By the way you can have this and still cry with tears. And it is another autoimmune issue. My mouth is soooo dry like you have expressed my eyes prety gritty plus another symptom I have of Sjogrens is Atrophic Vaginitis.....extremly dry u know where....without menopause..hope this helps!!!!
  3. lenasvn

    lenasvn New Member

    There are 2 blood tests that can be done,but they are not very good, only 65% of people with Sjogrens test positive. The only way to diagnose it is with a biopsy (lip for example). This is a fool proof test. The tear test can of course be done, but the only diagnosis you can get is dry eyes, and there are lots of people with dry eyes that don't have Sjogrens.

    Go ahead and get a biopsy done. In most cases it only affect the eyes and mouth, but it can also affect kidneys and blood vessels. Long term that is of course something to watch out for.
    [This Message was Edited on 08/29/2006]
  4. TerryS

    TerryS Member

    I only know this because I'm a medical transcriptionist -

    The correct pronunciation is "show grins".

    Good luck with getting diagnosis and help for whatever is going on!

  5. lurkernomore

    lurkernomore New Member

    Odd that you should mention it, well, not really as I have been reading in a Sjogren's forum after recently being diagnosed myself with it.

    My mention to my rheumy was of dry mouth and increasing dental problems. He came and ran his fingers along the underside of my chin (where the parotid glands are) and asked me how long the swelling had been there. Gosh, I told him I wasn't sure, but at least a year. The area is where you swell when you have mumps and it can be very painful.

    Also the glands under the arms and in the groin area can swell and be very tender too.

    So I had my bloodwork done and the specific test for Sjogren's was negative. That has not changed rheumy's mind though, because my C-Reactive Protein test was positive and I am scheduled for more tests by an opthamologist next month.

    So if you suspect Sjogren's, mention it to your rheumy. If you have other questions, there is a wonderful site I was told about called Sjogren's World and I was referred there by some great people here. Take care and please let us know how you are doing.
  6. dannybex

    dannybex Member

    Medications can dry out your mouth big time, so it could be a result of that.

    It could also be a sign of weak adrenal glands (low aldosterone or cortisol, etc.).

    I would second the recommendation for Biotene -- it at least has lactoferrin in it, which I don't think the other products do. ??? :)

    I don't know if a rheumatologist would be the right doctor to diagnose it -- perhaps an Ear, Nose and Throat person (ENT)?

    just my two cents,


    p.s. Certain foods can dry you out too -- look into Chinese Medicine or Ayurvedic medicine -- they both talk about foods that are drying, or moistening. And from a western perspective, you might look into EFA supplementation -- maybe you're not getting enough essential fatty acids.

    Also, I read on another board where someone had great relief by taking SAM-e...
    [This Message was Edited on 08/30/2006]
  7. Ranigar

    Ranigar Member

    I had a lip biopsy after my blood work came back fine.The biopsy wasn't a big deal.They take a sample of the glands just inside the lip.My eyes are now drying out so bad I've started Restasis and I take Evoac for dry mouth,it's a script.There is Plaqunel for inflamation and fatigue and all of these help alot so get yourself checked out because there is some relief if you have Sjogren's.Good luck!
  8. tandy

    tandy New Member

    Thanks so much for the great help
    and info on Sjogrens!!!

    I really gotta go get that biotene today~
    I can't stand it.

    Has anyone felt a soreness in your mouth too? my tongue and roof of my mouth is sore
    and very irritated.
    Maybe from being so dry.?????

    It looks ok tho.

    Yes, could be my meds too.

    Thanks again all~ your life savers!!
  9. tandy

    tandy New Member

    back up top again,

    Looking for an answer as to wether or not your mouth gets sore & irritated too?? tongue,and roof of mouth~

    Thanks :)
  10. Ranigar

    Ranigar Member

    Sorry I forgot to say that my mouth and tongue does get irritated and really sore quite often.I'm so used to it I don't think to mention it.There doesn't seem to be a reason for it and then the irritation goes away again.
  11. tandy

    tandy New Member

    I apreciate it.

    I bought that biotene toothpast and gel today!
    ahhhhhhhhh! its soothing. (but temporary)
    Thanks again
  12. Alicensk

    Alicensk New Member

    Tandy, my dry mouth problems are what sent me to the dr. I am an HMO member, and saw 3 different drs. who orderedd different tests, trying to find out what my problem was. When I mentioned to the last one that my brother had had an autoimmune problem (not Sjogrens), he sent me to a rheumatologist. Autoimmune problems often run in families. I was lucky because I was diagnosed within a few months; many women go for 6 or more yrs. from dr. to dr. before they get diagnosed correctly.

    Some points:

    -Biotene toothpaste helps, as does a gel called Oral Balance (OTC) I use it because I sometimes still wake up at night with a dry mouth. My dentist told me to use ACT mouthwash because it has Fluoride.

    - not every person with Sjogren's (Show-grins) has all the symptoms, which makes it difficult to diagnose. My blood tests came back normal and still do. The lip biopsy confirmed the diagnosis in my case.

    - it's an autoimmune problem and a rheumatologist is the dr. you need to see to get treatment, usually. Dentists and opthlamologists may recommend you see a rheumatologist if they're aware that dry eyes and dry mouth are often (not always) the big clues you have Sjogrens.

    - medications help. I take Plaquenil; it took almost 5 months to kick in, but I started to have more saliva then. I don't use Restasis eye drops, because the OTC ones (TheraTears and Systane are my favorites) do the job for me. Lack of tears makes your eyes feel itchy and scratchy. They can also become very light sensitive and you feel more comfortable keeping them shut. Try using some artificial tears. If you have to use them more than 4X/day, get the kind in the individual vials. The preservatives in the bottled type can irritate your eyes when you use them a lot.

    - many Sjogren's patients take Exovac or Salagen to increase moisture, but so far I haven't had to. I have some joint and muscle pain, and take Aleve for that when I need to.

    - saliva protects your teeth from bacteria so when you don't have enough of it, your teeth will often decay at the gum line. Unfortunately, not all dentists are aware of Sjogrens and just think your dental hygiene is lousy!

    - I'm a member of the Sjogrens Sydrome Foundation; they send a monthly newsletter and have a website that answers many questions about Sjogrens. They have books had useful tips for daily living, Like how to relieve the pain in my upper jaw when my slow-moving saliva causes a clog in the parotid (salivary) gland (just below the ear). I went to the Foundation's annual conference held in the San Francisco Bay Area early last year and learned a lot, both from the drs. there and from other Sjo. patients.

    I'm going to check out the Sjogrens World site after reading about it in another post here.

    Sorry to go on so long. I hope this helps you a bit.
    Alice N.
  13. tandy

    tandy New Member

    Wow! That helped alot!!

    I do have alot of teeth problems too.
    They are just literally falling apart.
    Thats why I suspect sjogrens,and called my Rhuemy for an appointment.
    My eyes are'nt too bad. I blamed allergys on them itching at times.

    But my mouth is horribly dry! so dry its sore in my mouth!! I feel like theres no saliva in there!
    I'm constantly sipping tiny sips of water.

    Thanks for the website mentioned for Sjogrens.
    I'll check it out for sure~

    somethings going on thats for sure.
    Thanks all!!