Sjogren's Syndrome Anyone? | Arthritis Information

I've not received a formal dx on this, but I am sure I have it in addition to the RA.. I have incredibly dry eyes, mouth and ( TMI for some be careful) vaginal area... so much so that i need meds for all that.. My opthamologist put me on Restaisis and plugged the ducts in my eyes to make better tears and keep them there. My GYN has given me meds to be inserted for the incredible dryness below... I must always always always carry hard candy and/or bottled water for my mouth dryness.

I have a prescribed med for my eyes.. And I use Optima for in between times... I don't have anything for my mouth dryness.. I just constantly drink water.... and when I can't is when I use tictacs or hard candies.. I try to buy sugar free but thanks to your comment I'll be sure it's sugar free now! ...

I just haven't be DX'd with it and from what my Opthamologist says I have very dry eyes and we'll see what the dentist reports in June when I see him... I'm embarrassed to say that it's been about 14 months since my last visit but I was dealing w/ neuro's and RD's and Endo's and PCP's and I was doctored' out

I have the flaky dry skin as well.. especially on my arms/hands and legs/feet.. I slather on the moisturizing creams ALOT!

I've encountered all the same dry symptoms that you have. I've discovered a body wash by Dove (the cream oil kind) that reeallly helps with the dry skin. I also use body lotion within th first 2 minutes after my shower every day, and that helps a whole lot, too.

I use restasis for my dry eyes. Did your GYN prescribe hormone replacement inserts for you? I'm curious as to what the medication is that he/she recommended, and if it works. PM me if you wish. Thanks!

Yes. Bizzalou.. That is exactly what she prescribed.. Estradiol tablets...

I know I'm in menopause but had been for five years.. This is a totally new very unpleasant experience! I'm hoping that eventually the Estradiol works..

Thanks for your reply!

yep.. have the eyedrops, the mouth crap, the vaginal ointment, and a saline gel for my nostrils.. at the moment I'm using otc replens because I REALLY dont want any hormones.. it helps, but not wonderfully.

I use a prescription toothpaste to remineralize my teeth, since sjorgrens causes the mouth to be so dry that it strips the enamel off.

I have sjorgen's. It has really messed with my eyes. I see the eye dr. once a month and have meds for that. I also use biotene for the mouth. Dentist keeps me loaded with free samples.

I, too have Sjogrens, and I think it is one of the most irritating of my health problems. I use Restasis for eyes and Biotene products for dry mouth.

Have any of you had your mouth so dry that you can't even speak properly without constantly sipping water? It gets a bit embarrassing at times. Like when your lips stick to your teeth! Biotene mouthwash helps, but how often can you use it? So I carry bottled water everywhere I go.

I've found that an electric toothbrush has been extremely helpful in keeping my teeth and gums very clean. As you all know, it is so important that we do that, as it takes no time at all for the dry mouth to ruin our teeth! I also use the little green brushes for between the teeth and they work wonders. I just wish there was something to keep from feeling so dry and thirsty all the time.

If anyone has any other hints about dealing with Sjogren's, let us know.

I have had that sensation, Nini where you can't speak...and you're so dry mouthed.. UGH.

I just went to Target today and bought us both the electric toothbrushes.. We had a very very old set and frankly I didn't think they were working well.. I got Sonic (I think) and I also ordered the water pic... I don't have great teeth but I want to keep them!! I'm scared to go to the dentist next month... I'm fearful of what he will find!! I see alot of blood when I brush.. and some redness near my teeth.. I want to cry.

I notice if I forget my Restasis for a few times that my vision is affected...anyone else have that happen?

How does one know for sure if one has Sjogren's Syndrome?

I have a SUPER DRY mouth, and vaginal issues as well. My eyes feel more or less ok.... maybe a bit dry.

I had bloodwork done and SSA and SSB were negative. Are those not tests for Sjogren's?

Thanks.
Hi there,

I also have Sjogren's secondary to RA. I have been taking Evoxac for 4 years now...it works great for me. If I don't take regularly, my mouth is so dry that I cannot talk...or eat...I have one tear duct blocked...and have all the same dryness issues. My eye doc discovered I have SS when my eye was very scratched from the dryness. The Evoxac helps my eyes as well as my mouth. Here's another wierd thing about Sjogren's...I don't sweat. Nope...very little. Have to make sure I drink enough liquids so I stay cool in the heat.

hope this is helpful to you. (I never had a lip biopsy like some have....) I did have the tear test and I "flunked" it . ask about Evoxac...it's wonderful.

[QUOTE=cdndream]How does one know for sure if one has Sjogren's Syndrome?

[/QUOTE]

I don't know if there is a particular test, my eye doctor could tell by the decreased tears/moisture in my eyes plus the symptons I complained about. He prescribed restasis but RA has limited my range of motion in shoulders/elbows, deterity in fingers, so I can't use drops, but when I can get someone to put the drops in my eyes, it certainly helps. Recently, my vision has become more blurry I think in part cuz of the extreme dryness w/the hot weather we've been having. I'm gonna look into getting those lacrimal plugs (I think thats what they're called)

My mouth gets extremely dry, like paper. I'm concerned about my gums and teeth since I take Actonel, and I've read about osteonecrosis of the jaw. So I get a cleaning every 6 months. My dental hygienist suggested chewing trident (sugarless) gum w/xylitol, or any gum with xylitol. Helps generate saliva, plus xylitol helps cut down on bacteria, something like that. I use a flouride toothpaste I get from the dentist and use ACT flouride mouthwash that he suggested using mid-day when I don't brush. I also use a sonic electric toothbrush (easy on the hands too) and try to remember to switch out the brush 2 to 3 times a year.

Most folks haven't heard about sjogren syndrome and are clueless as to how constantly bothersome and irritating it is.

Dr. can do a lip biopsy. Or, a schrimer test. That is where they place strips under you eyelids and see how much moisture is produced.

Sjorgens can become serious if not treated correctly. It can affect your organs. Plus, it does feel miserable.

I have sjorgrens syndrom. Go to the dentist. Dry mouth will make any little problem a big problem quickly. Also i recently learned it also makes your joints dry so they have less lubrication and more pain. Helped explain to me why my joints hurt when i am not swelling. It tends to come and go. Good luck and let us know what works for you. I believe anyone with Sjorgrens Syndrom would know before they got tested. When your eyes get that dry it is hard to miss. I am currently visiting the dentist for decay associated with my dry mouth problems. I have found the following items most helpful:

SalivaSure

lozenges - relief from dry mouth

Xyliwhite

Toothpaste gel

Almond oil

for dry skin

Olive oil

chap stick

These are all items from health food store sans the chemicals. Although I don't have sjorgens, I do have similiar problem associated with chemo from stem cell.

[QUOTE=rocckyd]Dr. can do a lip biopsy. Or, a schrimer test. That is where they place strips under you eyelids and see how much moisture is produced.

Sjorgens can become serious if not treated correctly. It can affect your organs. Plus, it does feel miserable.

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I've had the SSb and the SSA done.. and all were negative but so were all my deciding blood tests except the ANA which was l:640...

I had the other test for Sjogren's or at least for tear production .. the dye test.. I forget what it's called ....two last names.... and that's when the Optho said she was plugging my eyes and starting me on Restaisis... I want my RD to acknowledge this as well and to be sure to address my issues there in addition to RA.. only reason I would want a diagnosis..