Need info on Sjogren's Disease

Discussion in 'The Watercooler' started by Estherfromjerusalem, Jan 1, 2011.

  1. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    My sister-in-law is being investigated for Sjogren's Disease, and I wondered if anyone here knows anything about it. She is really worried. Thanks. Love, Esther
  2. Hound dog

    Hound dog Nana's are Beautiful

  3. HaoZi

    HaoZi Guest

  4. svengandhi

    svengandhi Well-Known Member

    Try the arthritis foundation. I think (no 100% sure) that the comedian Bob Saget's sister had this illness. Good luck to you and your family.
  5. timer lady

    timer lady Queen of Hearts

    My mom had Sjrogen's Syndrome ~ it's an autoimmune disorder with the common symptoms of dry eyes, dry mouth, heck just about dry everything. My mom had to keep a glass of water by her side to help her swallow each & every bite of food.

    Often times there are other autoimmune disorders that coincide with Sjrogen's. Mom had rheumatoid arthritis & lupus. The only known or accepted test for this is a lip biopsy.

    Good luck to sister in law & keep us updated.
  6. Fran

    Fran Former desparate mom

    My dear friend was suspected of this. They did the lip biopsy. She is already positive for Lupus and rheumatoid arthritis.
    Good luck to s i l.
  7. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Thank you all for your information. I looked at those sites on the internet. Quite honestly it is quite scary, and I don't think I will tell her what I have seen. She herself knows how to use the internet so she has probably seen it in any case. I think I'll adopt the tactic of just phoning her and letting her talk. She was pretty depressed about it last week when it was suggested that she be tested for it. We are good friends as well as being sisters-in-law, so I think I'll just be there to support her and listen to her. Thanks all for your input. Love, Esther
  8. DDD

    DDD Well-Known Member

    Esther your sister in law is lucky to have you as a friend. I can't imagine anyone else who could offer more caring support. DDD
  9. TerryJ2

    TerryJ2 Well-Known Member

    Ditto TimerLady ... my mom had it and had to keep water at her side at all times. It affected her tear ducts, too. Strangely, she tested negative for Lupus and rheumatoid arthritis.
    Best of luck to your sister, Esther.
  10. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Thanks DDD. That is so nice of you to say that. Terry, I hope my sister in law also tests negative for those things, thanks for writing that, it makes it sound less frightening.

    Love, Esther
  11. flutterby

    flutterby Fly away!

    I have Sjogren's. It's the second most common autoimmune disorder after rheumatoid arthritis. It effects the secretory glands which causes dryness of the eyes, nose, mouth, etc. Some (I think most) people never have more than that. Others have more involved illness that can effect the skin, joints, and organs.

    The blood tests checked are SS-A and SS-B and they aren't very accurate. They also do a Schirmer's (sp) test which is easily done by an eye doctor to check tear production. Completely painless. They also do a lip biopsy. Mine was negative, but I have been diagnosed clinically as I can trace symptoms back to early childhood - 4 or 5 years old. I also have no visible or palpable salivary glands in my lips.
  12. TerryJ2

    TerryJ2 Well-Known Member

    Heather, do you know if Sjogren's is genetic? You have a boatload of problems. Many hugs.
  13. flutterby

    flutterby Fly away!

    Terry, they don't know what causes autoimmune disorders. They're not necessarily genetic, however, having a member of your family with an autoimmune disorder does make it somewhat more likely that you will have an autoimmune disorder, but not necessarily the same one. And it's not something they look at and say...your mom has lupus, so we're going to watch you. It seems to be more of an after the fact thing - when looking at me they want to know if anyone else in my family has an autoimmune disorder. It then makes it easier for them to think that I have one, too. Make sense?
  14. susiestar

    susiestar Roll With It

    I have four female relatives with Sjogrens - some on each side, not all on one parents' side. It is very common and can be mild or severe or anywhere in-between. They think I probably have it but are not really interested in testing because there isn't much they would do that I don't already do for it. IF that makes any sense.

    I would hope she would not get too down over teh things online about it. It does NOT have to be as bad as it can sound online. She should explore things like the mouthwashes, toothpastes, etc... for dry mouth. I believe it is Oasis brand that has an awesome mouth spray that is a HUGE help. Water actually makes my mouth dry out faster - esp the tap water we have because we have well water that is VERY VERY hard. Oasis has a whole range of products and using them all makes them work even better than just using one of them.

    I am sorry she has to battle this!
  15. susiestar

    susiestar Roll With It

    There is a medication for Sjogren's that seems new - I hadn't heard of it before today. It is called Evoxac and it is designed to help with the symptoms of Sjogren's. As it is new I would be fairly wary of it. Not all medications do enough to justify the cost and/or the side effects. I know that the medications for overactive bladder sounded great until the research was really looked at - in most people it only lowered the # of times they went to the bathroom each day by one time. So if you are going every half hour and spend a fortune taking a medication that will lower this from 24 to 23 times in 12 hours, plus it gives you a lot of side effects (made several people I know feel like they had the flu - for six months which was how long they all took it!), well, is it really worth it?

    Just a few thoughts. I actually saw the ad for the medication when I clicked on the link posted above for the mayo clinic website's info.
  16. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Thank you all for your input. Susie, I wonder if we will be able to get Oasis products in Israel. In all likelihood, yes. I'll write down the name of that medicine too, and wait until she tells me what she's getting from the doctor. It will take a week or two until she gets results. She has to go to a rheumatologist, and her appointment with him isn't for another 10 days or so, then we will be a bit wiser.

    Thanks anyway, everyone, for your help.

    Love, Esther
  17. GoingNorth

    GoingNorth Crazy Cat Lady

    Another good product line to use for dry mouth is Biotene. They make toothpastes and mouthwashes and a chewing gum to moisturize the mouth. I'm sure one of these products or similar are available in Israel. Especially as Israel has a booming generic drug manufacturing program.
  18. flutterby

    flutterby Fly away!

    I haven't heard of Oasis products. I use Biotene products for my mouth. I also use Natural Tears in my eyes and will use Restasis from time to time as needed (Restasis is prescription only). And there is Ayr gel that I use in my nose.
  19. flutterby

    flutterby Fly away!

    Also, they use the same immunosuppressants for Sjogren's as most other autoimmune disorders. I think they typically start with Plaquenil, which is used primarily for Lupus. Steroids would also be on the table. For those with more severe symptoms, they would look at methotrexate, Imuran, cyclosporine, etc.
  20. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Thank you all so much. I have written down the names, and will keep them until she gets her diagnosis and then we will see.

    Love, Esther