Newbie and questions about testing, etc

[rhyanen]

Hi everyone. Thank you for adding me to this sige. I am new to the board and have a few questions regarding testing for Sjogrens.

I am a 45 yo female and have been having symptoms of Sjogrens for that past several years. As of recentl, meaning the past year or so,  my symtoms have become worse and the most annoying is the development of very severe light sensitivity. I work at a computer for several hours per day and it is causing a lot of problems. Last week I went to get my vision checked and it was discovered that I hadve severe dry eye. They did the Rose Bengal test and the Schirmer test which showed a 4. I suffer from joint and muscle pain on a daily basis and have had severe fatigue for years, but much of it is related to iron deficient anemia that is being treated with IV iron infusions. My dentist said I have very dry mouth. I often have an inflamed tongue and mouth ulcers. I also have white patches on my gums.

The eye doctor wants me to come back for a dry eye evaluation and I have heard about the new Sjogrens test. Does anyone know how accurate it is? Is lip biopsy still the gold standard?

I had an autoimmune evaluation years prior and none of the Sjogren's antibodies were positive, however at one point I had a slightly elevated ANA speckled pattern. And I carry one of the prominent Gene types related to Sjogren's.

My big question is....what kind of specialist should I start with to try to pursue a diagnosis? Dentist, ophthalmologist, rheumatologist?

Thanks so much!
Amy

[SunshineDaydream]

Welcome to the forum, Amy.  Sorry to hear you've been having health issues.

I would recommend you take to a rheumatologist letters stating your respective problems from your dentist and eye doctor. The rheumatologist can run blood tests to see if you have positive SSA and/or SSB and request lip biopsy if necessary. I think a couple of board members have said their eye doctor did the early Sjogren's test, but I think after that you would have to go to a rheumatologist for treatment, anyway. The first lines of treatment are usually prescription medications (1) plaquenil for fatigue, joint and muscle pain and maybe some improvement with dryness, and (2) evoxac or salagen (or their generics cevimeline or pilocarpine) for saliva production. Your dentist can likely also prescribe the saliva producing meds.

There are light sensitivity and computer glasses that I don't know much about, but hopefully someone will come along and comment about them in more detail.

I hope you find answers and treatment soon. In the meantime, here's a list of items members have found to be helpful for a variety of Sjogren's related ailments: https://sjogrensworld.org/index.php?topic=10139.0

[eye2dry]

hello rhyanen.

Welcome to the forum.

Your symptoms sound very much like sjogrens.

Your eye dr. can refer you to a rheumatologist based on your symptoms and exam results
Have you seen your primary dr. for any of these symptoms....if so, have they mentioned
you should be referred to a rheum. Did your primary order your original ANA ?

There are things your above drs can prescribe to help you feel better....Evoxac for dry mouth
and Restatis or Xiidra to help with the eyes.....so forth.

You have a lot of arrows pointing to the sjogrens diagnosis...even the anemia, aches and pains of joints,
light sensitivity, inflamed tongue........

I am 59 and was diagnosed in 2010 although had symptoms for years that no one put together
that was sjogrens, I also have RA as well along with hypothyroid...as you may know that with one
autoimmune disease you are more likely to develop another one.

What gene specific to sjogrens were you told you had, I am not aware of this....who decided to look
for this gene and why? was this lately?

I think keep your appt with your eye dr.,maybe someone will read this and tell you more about this
"new test for sjogrens". My diagnosis finally came from a positive SSA/SSB, ESR, RF,ANA........blah,blah.

Nice to meet you. If you end up eventually being diagnosed with sjogrens, do not worry much. After 7 years
of this diagnosis..........it is mostly an annoyance that's ramps up at times, then fades...cycles.
ha-ha....you can tell today is a good day for me

shelly

[rhyanen]

Thank you everyone for the warm welcome.

My 17 yo son was diagnosed with celiac disease are 22 months. He had the classic presentation of failure to thrive and positive intestinal biopsy. Around that time the rest of the family was tested. We were all seronegative however we decided to get genetic testing done on my celiac son and what I found interesting was that he inherited 2 copies of the HLA DQ1 gene(one from me and one from hubby) which is found commonly in Celiac patients but also in other autoimmune diseases....Sjogrens included.

My son also has autism and autoimmine encephalitis. He has had multiple flare-ups since age 3. My Father has pernicious anemia, vitiligo and hypothyroidism. Alot of autoimmunity in the family. My sister has symptoms of autoimmunity as well.

The optometrist wants to do the dry eye evaluation however his agenda is to push a new treatment on me. Should I have him do the study or go to my ophthalmologist to have it done? Who would be more qualified? I know an optometrist is not an MD.

Here is a link to the genetics if Sjogrens.  http://www.hladiseaseassociations.com/autoimmune-diseases-and-hla/sjogrens/

Thanks!

[eye2dry]

WOW Rhyanen !

With your symptoms...family history and your genetic (sons) testing.....how
could any dr. not take you seriously and look for sjogrens/treat for sjogrens.

Yes, an ophthalmologist rather than optometrist for sure on any eye testing is
the way I would go. As many on here will tell you.....you do not have
to have positive blood or lip biopsy tests for most rheumatologist to treat
your sjogrens. I was prescribed prednisone orally at my first appt., also
received injection into right hip the same visit...I was in bad shape. Once things
quieted down he then added Plaquenil and slowly weaned me off prednisone.
It took me 4 months of Plaquenil to notice improvement.
I also take Cymbalta for joint pain.....it really works for me.

Let us know what happens, what you decide.

take care,
shelly