Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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jewl12 09/06/2011

Hi folks. I have a problem that I'm guessing most of you would probly like to have. I was tested possitive for Sjogrens about a year and a half ago. I did not test possitive for RA so my doctor was suprised and didn't make a big deal about it for awhile. But I kept complaining of back , feet, knee , ect pain and really bad stiffness so he talked me into taking Plaquniel. I've been on it about a year. Still having a lot of stiffness but that's not the problem I want to ask you all about. I don't seem to have the really bad problem with dryness that everyone else seems to have although I do sleep with a humidifier because my throat gets dry and I caugh., My problem is watery eyes. I've read that that is still a symtom of Sjogrens but I don't hear as much about it. I've tried every over the counter eyedrop and nothing seems to work very long. I'm begining to wonder if I should suggest that my doctor redo the blood work and see if I test possitive. Also the RA test. I do have swollen joints in my fingers and my back and feet hurt and I am soo stiff. But couldn't this just be ostio. He's never even suggested that I see Rumy. And I see by all the comments that you all have one. I really feel sort of fortunate that I don't have the severity of problems that most of you have but I'm not fooling myself that it won't get worse. I'd love to hear your comments and I keep you all in my prayers

deleted_user 09/07/2011

I would get the test done again. Everybody makes mistakes sometimes, even lab techs. Did he have any x-rays done of your joints? It is possible to have arthritis and not have Rheumatoid arthritis. Either way, I would see a rheumatologist and show her all the blood work and med history.

jewl12 09/07/2011

He has always said I had ostioarthritis. He gave me mobic for it . It helped but I kept telling him how stiff I was. He did a test for RA just to make sure it wasn't RA and I tested negative. He said it was strange that I tested positive forSjogrens and not RA. As far as I know, I don't have any other autoimune problem. So he gave me Plaquniel for the stiffness and pain. Now I'm wondering if I had a false positive for Sjogrens and my pain is just from ostio. The only joints I have that swell are my knuckles and that happenes with ostio I think. And the stiffness gets better after I get up and get moving although sometimes some of the pain doesn't always go away. I don't really want to take Plaquniel if it's not warrented. And I hear so many of the problems that you all have that I don't and it makes me wonder. My main problem is pain and stiffness in my back , hands feet and knees. Especially my back.
Thanks for your reply

deleted_user 09/07/2011

You don't have to have RA to have Sjogren's. Anyone who thinks that should be crossed off your list.

I'd go to another doctor or find a rheumatologist who sees other Sjogren's patients. My first two rheumies were fine for diagnosis, but neither one could help me live with the problems. They both recommended the guy that I see now. He speaks fluent Sjogren's and I feel so much better since I started to see him in 2004.

deleted_user 09/07/2011

Forgot to mention that watery eyes are a sign of dryness. You need to be on a better eye drop program.

My rheumy ordered x-rays to rule out rheumatoid arthritis. Treatment with glucosamine supplements really did help out with my dry-joint arthritis. It's works best for moderate to severe pain, but not so much for mild joint pain.

nursea49 09/07/2011

I also have very dry eyes but they also water at times. Sounds crazy but it is part of dry eyes.
You really need to see a rheumatologist. You have a lot of things going on.
Good luck!

imaskeered 09/08/2011

My eyes are at their worst when they are watering excessively. It is not the quantity of the tears but the composition. I have plenty of liquid but it does not contain the lubricating factor and feels more like sweat running in my eyes. Use the eyedrops of your choice but don't wait until you're in pain to use them.

jewl12 09/11/2011

Do I need to go to a rheumatologist even though I've been told that I tested negative for RA? I always feel like they think I'm being a hypercondriac and asking for trouble.

deleted_user 09/11/2011

Yes, a rheumatologist is the appropriate doctor to treat Sjogren's since it's a rheumatic disease (means: inflammatory.) The inflammation of Sjogren's can cause all kinds of unpleasant problems so it makes sense to have a doctor who can deal with them.

Good luck!

deleted_user 09/12/2011

I produce extream tears sometimes. they just run down the side of my face. my optomoligist said that your lids are suppose to produce a oil which holds the tears in. mine don't so even if I get tears there is nothing to hold them in.
I'm new in this group I have not been diagnosed with this syndrome yet.

Diane

Sillyak 09/15/2011

Before I was diagnosed with Sjogrens I was told I had dry eyes and I thought they were crazy because in the cold and wind my eyes wouldn't stop crying. When I had my first eye exam my corneas were pitted from the dryness. So everyone here is right. You can have very watery eyes and still have the disease. I hope this helps.

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