This is my first post

[micjmckee]

Have had psoriatic arthritis for 20+ years and have been on Enbrel for close to 15 years.  I see no mention of Enbrel here.  Are biologics not useful in SS.

By the way I am 48 and have not been formerly diagonsed with SS yet but believe that is coming very soon.  What is the best test for that?

I have had some many blood tests with different doctors in 3 weeks it is crazy.  I have been pushing them.  CT chest scan - nothing.  Urine test nothing.

Increase Liver which I have had for years - fatty liver and an ige level in the 3300's and in the 3600 another time.  Docs were stumped.  I found out about SS on Wed this week after going thru the ANCA tests - totally negative - good.  This is bad but that is worse Weogners and Churg  Strauss.  Then abpa Aspergillisos in the lungs.  I was actually positive on that on a blood test but with the CT scan negative.  That is off the board.  My head is swimming.

I live in Pittsburgh.  Anyone here a Steelers fan!  If you live in Pittsburgh and you are not a Steeler's fan.  You have 4 days to get out.  The fifth day you are wrapped in terrible towels and thrown from the city.  Just kidding but we are nuts about football.

[Joe S.]

Sjogrens is usually a diagnosis by elimination. Typically it take 7 years. good luck on your journey to find a diagnosis.

[warmwaters]

Regarding Sjogen's and biologics - There are some that seem to give symptom relief. Rituxan and IVIG have been used, depending on symptoms, and I know others are being used and researched.

If you type a search term like Enberel in the search box up at the top, you can see what kinds of experiences others report with it.

[SjoDry]

Welcome micjmckee!

Let's forget about the game last week...I live in the burgh' also. Let me also welcome you to our group here. This is a wonderful group with loads of support and smart people with great advice.

My name is SjoDry and I facilitate a Sjogren's Support Group here on the south side. I have quarterly meetings. (You can find our FB page...the group name is Sjoggies In Pittsburgh ~ SIP). I keep the page updated with our meeting dates. Am working to secure our next date & speaker. Not sure who your doc is, but there is a new UPMC Sjogren's Syndrome Clinic in Pittsburgh.My Rheumy runs the group and was trained under Dr. Vivino (leading Sjogren's doc). Feel free to private message me and I am happy to give you details. Also, I created a closed FB group for our local Pgh. members in the event that they wish to connect outside of our meetings.

I hope you will consider joining our local group.
Take Care.
SjoDry

[irish]

If you are running high IgG levels the doctors should be doing more testing for immune deficiencies. It is possible that you are immune deficience. See a site called primaryimmune.org for more information.

Also, is it possible that your IgG levels are testing differently because you have been on the Enbrel for the 15 years??? Also, be aware that negative blood work for Sjogrens doesn't mean that you don't have the disease. The symptoms can be there but the blood work can be negative. It is not unusual for rheumatoid arthritis and other autoimmune diseases to have Sjogrens disease also. The big thing is it takes time, as in years many times, to get all these diagnoses nailed down. I had symptoms for 40 years before I was diagnosed and it was so frustrating. Good luck to you. Irish

[Jasper]

You don't mention all of your symptoms. What are your symptoms? Do you have symptoms of Sjogren's Disease?

Even if your blood work is negative, you can still have Sjogren's Disease.

The gold standard for diagnosing Sjogren's Disease is the salivary gland biopsy (lip biopsy).

The biopsy must be done by a very experienced and competent specialist (oral surgeon or ENT) who does many salivary gland biopsies a year and it must be interpreted by a very experienced and competent pathologist who interprets many salivary gland biopsies a year. If either is not competent or experienced the biopsy can be done incorrectly or interpreted incorrectly and the result will be useless (or worse ..... false negative).

Hope you can get a diagnosis and appropriate treatment.

[micjmckee]

Symptoms include dry eyes using fluorometholone.  Dr said edema in one eye.  Also said I have finger print map dotting but not sure if related.  Went to dentist for dry mouth and oral thrush.  He said salivary glands producing cheeks and under tongue.   Oral thrush seems to have people confused.  Have gerd and sleep apnea.   Experience shortness of breath but have asthma.  Have lost 20 pounds over a month but have really watching food intake cut out all sodas and most starches. It is 6 percent of body weight.   Irish mentioned igg they are nornal as well as igm and iga.  Ige is one that is very high

[irish]

I would think that an apt with an immunologist or even a hematologist would help get you more information. The autoimmune diseases can produce an autoimmune hepatitis that your doctors should maybe wonder about. The immunologist is one doc who could most likely put together blood work results and know which blood work to do. They know more about blood work in relation to many diseases than the average doctors.

A Hematologist also is more knowledgeable about blood work and could possibly head you in the right direction. I wonder about doing all the expensive testing such as scans, etc until someone can sort of isolate which direction they are going. If it was me I would find an immunologist or a teaching hospital.

Sjogrens can travel along with RA and is very common. The other question is just what the Enebral is doing to your body after all these years. Do not panic but I would urge you to get another opinion to sort this out otherwise it is like throwing money down a hole. I did that for many years before I was referred to my immunologist. Good luck. Irish