Test Result questions

[Deseree]

Hello again everyone. Finally after three long months, I have test results. I am being scheduled to see a rheumatologist, and so I'm trying to make sense of the results myself. My primary care doctor could only tell me a little bit about what may be going on, and I feel like the members of this site are the most knowledgeable on the internet when it comes to Sjogren's, so I have a few questions.

My results came back positive for an autoimmune condition: ANA and RF positive. I had the "Early Sjogren's" test, and all of my other markers were negative with the exception of the SP-1 marker, which my doctor said was "borderline".

My understanding is that basically any positive specific antibody indicator (SP-1, PSP, CA-6, SS-A, or SS-B) indicates Sjogren's, no matter how small that positive may be. Does anyone know if this is correct? My primary care doctor didn't know. I was only told that I certainly have some kind of autoimmune condition.

Also, a month ago my RF and ANA were NEGATIVE. Is it strange that they both turned positive in just under a month? I don't have the exact numbers, but my doctor made it sound like they were both VERY high now. Does this mean I'm progressing fast? Or does the ANA and RF level not correlate with severity of the condition?

Finally, if it's not Sjogren's, what other autoimmune diseases could mimic this? I feel like it must be Sjogrens, but since none of the other markers were positive, I wonder if there's a Sjogren's mimic I haven't read about.

Thank you all so much!

[Maria3667]

Hi Deseree,

I understand your confusion and desire to get a proper diagnosis.

My rheumatologist concluded I have Sjogren's on the basis of symptoms; blood work was mainly negative. Technically speaking I have 'sicca syndrome' but since the symptoms are the same the terminology doesn't really matter. Besides that, there is no universal consensus on the Sjogren's syndrome's definition anyway.

I read 100's of diseases can produce dryness symptoms and 350+ different medications, so it's difficult to find out.

Hope someone medically educated can analyse your statistics?

My best to you!
Maria

[Deb 27]

Deseree, so your primary care doc ordered all these tests but you are waiting to see a rheumatologist?? You do not have to have a lot of positive tests to be diagnosed with SJS. Quite a few of us here are what is called seronegative. SSA and SSB negative.

It will take a rheumatologist to look at your blood work , do a physical and also your symptoms to offer a diagnosis. I hope you don't have to wait long. It sounds like you've waited long enough.

[Deseree]

Deb, yes, I'm still waiting to see a rheumatologist. I requested my primary doctor run the test because I thought my symptoms were very strange, and autoimmune conditions run in my family. She was very skeptical and I think she just requested the tests to make me happy, but now that they are actually positive, I'm stuck waiting for a rheumatologist. I just hope that whatever it is, it doesn't ruin my life.

[irish]

The positive ANA generally can mean autoimmune something. The RF is rheumatoid factor and the fact that borderline Sjogrens test is also present would not be surprising. If you have a history of family autoimmune disease and have symptoms and have some positive tests for any autoimmune disease it is very possible that something is brewing.

The thing to remember is to not lay and think about what you have or what you could have. There is no way on God's green earth that anyone can predict absolutely anything about autoimmune. I am into my 50 years of autoimmune, and just spend an hour with my immunologist going over my issues and we don't know a whole lot more of enlightening information than we did 12 years ago. We know what I have for diagnoses but we can't pinpoint exactly which symptom goes with which disease.

There are a lot of different oral meds and IV meds to be used and many work extremely well, some work so-so and some don't work at all so we have to go on and try the next med. Much of the existing with autoimmune is done with your willpower and your brain power. You learn to exist with what can't be gotten rid of and to organize your life and activities, work schedule (if needed) and concentrate on family and the important things in life.

I'm not trying to discourage you, but trying to slow you down a little bit. The things you are thinking of may or may not happen. When one has a chronic disease they learn to take one day at a time. Also just keep track of your symptoms ad if they change with dates etc so you can keep the doctors updated.

I use the purse calendar that has 2 pages for each month and contains 2 years. Each appt day with doc and time and tiny writing with important blood work results like Hemoglobin  (for me) and maybe top or bottom of page other little notes. The other blank pages in the calendar can have other info of importance. I have these calendars going back to the early 90's and can check back
for tests, scan, etc if docs or I need to know. I also finle the doctors letters and info, of course.


THe rheumatologist should be able to sort things out with this blood work. Also, be aware that Sjogrens often accompanies other autoimmune diseases such as thyroid or Hashimotoes disease, Rheumatoiod Arthritis, Celiac disease, etc.

I now have 5 autoimmue diseases and the Sjogrens was one of the first along with the Myasthenia and the thyroid. Be organized and calm and things will fall into place. Not everything will happen to answer your questions as at the present time not all the questions or answers are even known. Still a lot of research to be done. Be your own advocate and if a doctor doesn't suit you find another.

I wish I had kept track of all the doctors I have gone through. Don't worry about hurting the doctors feelings. Ask for a second opinion and if they don't oblige it is usually time to find the new doctor. It is your health and your body. Good luck and please keep us updated. Irish

[happylife]

Deseree,

You can use this site to interpret your test results.

https://www.trinitybiotech.com/reference-lab-services/diagnostic-tool/

Happylife

[markt]

Just wanted to reply, as I had a similar lab report when I did the Bausch and Lomb Sjo Test at onset of symptoms/initial flare.

I too was positive (significantly) for SP-1 and marginally for CA-6 antibodies.  RF was borderline.  Beyond obvious symptoms, this was enough of a cue for my Rheumatologist to order a labial tissue biopsy; this showed focal lymphocytic sialadenitis... another hallmark of an immune reaction in salivary gland epithelia characteristic of Sjogrens.   

From there we started down the immunotherapy road and I was taken seriously as a patient.  Sadly, I can still go to other practices, and they will not recognize my diagnosis because of the absence of SS-A/B antibodies. 

This is changing though... more and more novel antibodies pertinent to the etiology of Sjogrens are being uncovered and eventually accepted as diagnostic criteria (hence PSP, SP-1, CA-6, etc. being used).  My advice is skip the run of the mill practices and go to a teaching institution (Hopkins or Duke) and then come back to your local Rheum for continuity of care once you have been confirmed/diagnosed.

Lastly, your diagnosis can be better informed by further testing and info at hand (family history) like others had mentioned.  My Sjogrens diagnosis, or indication of autoimmunity, was further informed by the fact that I had slightly positive TPO antibodies present.  It's not uncommon for Sjogrens and Hashimotos to co-occur... and makes the Sjogrens diagnosis less of a stretch.

- Mark

[Deseree]

Thanks everyone for your replies. This has been a terrifying experience for me, with so many ups and downs, and this message board has been a great help. I managed to get an appointment with a rheumatologist this coming Tuesday, so I should have more answers then. I'm just shocked at how quickly I developed symptoms. I was literally fine one night, and had extreme dryness the next morning. My eyes have been hurting more and more over the last few days and I'm just really scared about what the future holds. I'm only 30, and I feel like I've just been given a death sentence. There is so much more I wanted to accomplish before a debilitating disease took me out. I really regret not doing more when I had the chance. I continually wonder how the disease progresses in young people vs middle aged people. I'll keep everyone updated as I find out more.

[irish]

I know that you are scared and rightfully so. However, please don't let the fear take over because stress that comes with fear can increase the symptoms in Sjogrens or any autoimmune disease.

Be aware that flares happen in autoimmune diseases is: AID.This is when one can be relatively comfortable with few symptoms and something can happen to trigger the onset of increase in symptoms. This could have happened to you, only a trigger or stress could have kick started symptoms overnight. I had a skull fracture/brain concussion and that kickstarted my weakness which was diagnosed so many years later as myasthenia gravis.

Some triggers can be a cold or flu or some other virus, or s surgery or even an emotional trigger such as a death in the family. So many things can happen to stress us out. Do not panic as if there is anything that autoimmune disease is....it is fickle. We can be so miserable and think that our lives are ruined and then a med or even rest and time can decrease the symptoms and we feel better.

We don't always feel like out old selves, but we have more stamina and ability to get more things done. Sometimes we just have to remake our schedules to lighten our load or the way we do things. Many of us have said that chronic disease has a way of teaching us what really is important in life. Hang in there and just wait quietly and you will learn things. Hope and pray that your rheumy turns out to answer your question. Good luck and keep us updated please. Irish

[markt]

I'm only 30, and I feel like I've just been given a death sentence.

More like an opportunity to adapt and overcome...  not the life's story you were looking for, I know...  On the positive side, you now have choices to make in your treatment (you will find that you have to fight your Drs. and insurer to make them reality).  Regardless, choices are something that folks here have been lacking for decades.  Sjogrens has been a grin and bear it type of lymphoproliferative disease that for a long time has not been taken seriously.

My neighbors 3 years old son that plays with my daughter started having seizures yesterday; upon MRI, they found multiple, as in many tumors, in his brain and possibly other areas of his body that are being still being investigated at present.  Now that's tough... especially when you are three and "don't understand."  His poor Mom is a single Mom who just lost her own Mother to Cancer.  I'd say that constitutes being much harder to reconcile.

[Deb 27]

For sure, just concentrate on today. Don't let your mind or anxiety make you think of the what if's because they may never happen!! I had to get that into my head b/c anxiety would just take me to crazy places.

Glad you could get an appointment so soon. I hope you get a good rheumatologist. If you aren't satisfied, try to get a recommendation from someone for a good rheumy in your area. I've seen a few in my day and some were pretty good, some were excellent and some were horrible!

Sounds like you at least need a prescription for Restasis for your eyes and they will probably put your on plaquenil. Plaquenil is a common, basic med for auto immune diseases. Feel lucky if you got diagnosed quickly. For many of us, it took years! I was so relieved that I was happy to get a diagnosis!