Sjogren's Syndrome

[Lucy]

One of the symptoms of Sjogren's Syndrome is dry eyes. I'm wondering if anyone here has investigated this possibility if they have severe dry eyes?

I know most of us have lasik-induced dry eyes, but if a person had Sjogren's either before RS, or after, it could open up some possibilitites. I'll put a link or two here.

http://www.niams.nih.gov/hi/topics/sjogrens/ -


http://www.arthritis.ca/types%20of%2...efault.asp?s=1.

[Raj]

If you have both dry eye AND dry mouth, you probably have Sjogren's. Those are considered the cardinal symptoms. I have to wonder what percent of the time dry eye occurs without dry mouth, and how it can be successfully diagnosed in the absence of dry mouth.

9 out of 10 suffers are women. So if you're male and don't have dry mouth, you probably don't have it. Female and without dry mouth, hmmm...who knows.

Raj

[Rebecca Petris]

We have quite a few Sjogrens patients as registered users here.

A good resource for Sjogren's patients is the Sjogrens Syndrome Foundation. They also put out a nice monthly newsletter called "The Moisture Seekers". I joined awhile back just to keep up with things.

SSF write grants to support research, including for dry eye. When we open our store here we are planning to add a feature to allow users to make donations to nonprofits like SSF that benefit dry eye patients.

[Mr_Cabot]

Sjogrens

Lucy,
I investigated Sjogrens just to see and the tests came back negative.

[Lucy]

Mr. Cabot--

If you don't mind........what kind of tests were they?
If you remember or care to mention it. thanks

[Scout]

If you don't mind........what kind of tests were they?
If you remember or care to mention it. thanks

Lucy,
I was referred by my primary care physician years ago to rule out Sjogren's Syndrome. At the time I was diagnosed with autoimmune thyroiditis and it has some similar symptoms and also sometimes occurs at the same time.

It was quickly ruled out by the ophthalmologist I saw because even though my eyes lacked tears, my mouth (although dry) did not lack saliva to the level consistent with Sjogren's Syndrome.

Here are the diagnostic recommendations from the Sjogren's Syndrome Foundation website:
Sjogren's Syndrome Diagnosis

Excerpt:

Once Sjögren's syndrome is suspected, a physician will request a series of blood tests, including:

* ANA (Anti-Nuclear Antibody)
ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren's patients have a positive ANA test result.


* SSA and SSB
The antibodies SSA (or RO) and SSB (or LA) are often found in Sjögren's syndrome; 70% of patients are positive for SSA and 40% are positive for SSB.


* RF (Rheumatoid Factor)
This antibody test is indicative of a rheumatic disease. In Sjögren's patients, 60-70% have a positive RF.


* ESR (Erythrocyte Sedimentation Rate)
This test measures inflammation. An elevated ESR can indicate an inflammatory disorder, including Sjögren's syndrome.


* IGs (Immunoglobulins)
These are normal blood proteins. They are usually elevated in Sjögren's.

The physician is likely to refer the patient to an ophthalmologist for further tests and to an oral pathologist or dentist for additional procedures.

The ophthalmologic tests include:

* Schirmer Test
Measures tear production.


* Rose Bengal and Lissamine Green
Uses dyes to observe abnormal cells on the surface of the eye.


* Slit-Lamp Exam
Indicates the volume of tears by magnifying the eye and viewing it in its resting state.

The dental tests include:

* Parotid Gland Flow
Measures the amount of saliva produced over a certain period of time.


* Salivary Scintigraphy
Measures salivary gland function.


* Sialography
An x-ray of the salivary-duct system.


* Lip Biopsy
Used to confirm lymphocytic infiltration of the minor salivary glands.


Scout

[Mr_Cabot]

Sjogrens Test

No problem Lucy,
I was having blood work done for upcoming nuptials and asked if they could test for Sjogrens. They test the blood for antibodies typically observed in sjogrens syndrome, SS-A & SS-B.

Reference ranges are:

< or = 1.00 is NEGATIVE
> 1.00 is POSITVE

My results were .06 for SS-A, and .07 for SS-B. So I wasnt even close. Which means I can eliminate sjogrens from my list.

[grandmajane]

Sjogrens reply

Lucy
I saw your post looking for people with sjogrens - In June of 2002 I was told that I was 3rd level of sjogrens - and the reason for the 3rd level was because by blood is not affected yet. I have severe dry eyes and no longer produce tears - I never had lasik surgery - all of a sudden I was having problems seeing and extremely light sensitive - well after 7 drs and a lot of tests - they told me that I was 3rd level of sjogrens. They told me that you will have usually 3 or more things going wrong at one time - thats when they look to sjorgrens as a possibilty.They said all the systoms are the same as full blown sjogrens as 3rd level sjogrens. I had my eyes - throat was so dry that I couldn't swollow and I had no memory at the time. They told me that sjorgrens most of the time will focus with the eyes - mouth - throat and most of all the memory. They told me that they will look back in your history as far back as 10 to 15 years and some of the things that you had were related to sjogrens. One of the most common things they told me to watch for was paralyzed vocal cords (which I have already had for over 6 weeks) They told me that it will attack any fluid producing gland in the body with NO WARNING - AND IT DOES - TRUST ME. They told me that when something new comes up - all they can do is treat it and wait for you to go back into remission. At the moment I have been treating for very bad acid reflex (for over 2 yrs now) I have had 2 surgerys to try to control it and I am still having problems - I see another surgeon on June 6th for consultation and then back to my surgeon to make the final decision as what to do next - they are now looking as gastro by pass surgery to get it under control : They are afraid if they don't get it under control that I could get stomach or throat cancer from the acid If you want the list of systoms for sjogrens it is posted under the sjogrens board - there is a list 3 pages long - check it out - its surprising how many things can be affected - I have alot of them that is listed.
Hope this info helps - let me know if I can help anymore - Sjorgrens is no fun
Grandmajane

[Lucy]

Funny thing...........

I'm here snooping around in corners checking things out and look what I find.
I have written this on the bb, probably in the open forum that I have been diagnosed (positively) with Sjogrens syndrome as of July 2006. It is now Oct 16, 2006 and I just came back from a very looooong visit with a rheumatologist today. My lip biopsy in July was positive, but wasn't done or read corredtly and one doc was questioning it. Since then, 5 or 6 docs have agreed it is a positive lip biopsy.

As of today, I have positive bloodwork for Sjogrens. There will be more workup as we're not done yet, but thought I'd add this in to this relevant thread. I've been on some meds for systemic involvement and feeling better. The eyes are NOT feeling better. I hope to be fine tuned a bit soon as they have upped my medication. Again, this is not for my eyes, but at least if I can peel myself off the couch, everything will be better.

I just started Salagen a few weeks ago, but have been very lax about it. This dr visit today told me to take it and double the first dose. Wouldn't it be something if the eyes began to feel better?

[Silverlady]

Hope they do

Lucy,
I sure hope they do. I'm another who is sero-negative for Sjogrens. I do have a positive mouth biopsy. When my Sjogrens started, I had dry eyes and no dry mouth. But I am one of the ones whose mouth simply started burning. Unfortunately so did my feet and legs. Then the pain started. I have nerve damage from the Sjogrens.

So you can't rule out Sjogrens when it doesn't show up in your blood. I've had full blown Sjogrens for three years and all my blood markers are still negative. Including my Rheumatoid Arthritis. It is very evident in x-rays and MRI's.

I've been on immune modulating medication for over two years (methotrexate and Humira) with no improvement in my eyes or the Sjogrens. But I would not give it up. It could be worse and worse is not an option. Some people do improve on these medications. Hopefully you will be one of the ones who do.

Lucy, for me the Salagen is very good. It gives me moisture not only in the mouth but some in my eyes. Without it my eyes are bone dry. With it, they can be tolerated most of the time. (lots and lots of drops still).

Billye

[Lucy]

Billye, I was worse than I am now after 6 or 7 weeks of treatment with methotrexate, prednisone and folic acid. The new doc just increased my dosage for the next two weeks. I felt llike I was dying for the past two or three years. I am already better. My eyes are NOt better. I can at least get up from bed and the couch since starting these meds.

I have brand new tests showing positive Sjogren's markers in my bloodwork.
ANTI-RO/ANTI-SSA=POSITIVE.
NUCLEAR ANTIBODY=POSITIVE
TITRE=1:640
NAB PATTERN=SPECKLED

Along with a positive lip biopsy, it would be hard for anyone to suggest I didn't have Sjogrens. (Meaning doctors.) Trouble was, I saw a local yokel who is not smart and he said my biopsy read "negative." Just since July, 5 other doctors have disagreed with that and said the biopsy was a positive read. Since then, just last week, I've had new bloodwork come back with the Sjogrens markers. Makes me wonder why, just 2 or 3 months ago where the local rheumy's brain was. I have a "follow up" appointment soon with him and will take all of my other paperwork showing him where he just "missed the whole thing." I will not see him after that. No matter, because I have two excellent rheum's each less than 2 hours away. So, I should be all set and headed in a good direction.

I do realize there is nothing that can be done "eye-wise" more than what I'm already doing. I will be anxious to see if the Salagen does help my eyes and I should know within a week or so. Will report back on that item.

[Silverlady]

sorry and happy

Lucy,
I'm sorry and happy that you have a diagnosis of Sjogrens. Sorry because I know the misery it causes and happy because you finally have a diagnosis and doctors won't think it's in your mind. Have you checked out the Sjogrens forum link? www.sjogrens.org

Billye

[Silverlady]

oops, wrong site

Sorry Lucy,
I meant to post www.sjogrensworld.org

But the links are both good links.

Billye

[Lucy]

Good Sjogrens docs

Just for good news, I have had more LUCK (and that's what it is) in finding good rheumatologists in the past two months than I've had finding ophthalmologists who KNEW WHAT WAS GOING ON in the past 7 years.

My first rheum was a local who, despite positive tests, told me there was nothing wrong with me. I quickly got referrals to two others a couple of hours away and they had no trouble finding out what was wrong with me. I am on a complicated course of meds and am feeling better. Sadly, my eyes are not better and I don't expect they will be.

I am truly blessed by two new rheumatologists in different cities, different practices who seem to have their stuff together. My hats off to them. I lucked out.

PS. I have to say that one of the rheumatologists personally has Sjogrens and she had RK surgery. She knows the wrath and could relate to the consequences. I felt an instant bond with her, can you imagine the chances?

[Silverlady]

Wow Lucy!

You sure hit the jackpot with your rheumatologist. Would it be too much of an imposition to share the names of the medicines you are taking? I'm taking Methotrexate, Plaquenil and Humira. I just wondered if there was something better that I'm not getting. By the way, even with all of this, I've seen no improvement in the dryness. It does help other problems.

Billye