New and confused

[teoti]

Hi!

Title says it all-- I was dxed with Sjogren's by a rheumatologist ten years ago. No RA, no lupus,  yes Hashi's, and always a positive ANA. (checked every few years for some reason on another)

ALL the symptoms of Sjogren's getting worse over time but I've managed the symptoms well enough with OTC stuff and lifestyle modifications.

I just saw a new rheumy who said, although ANA is still positive, all tests, including Sjogren's, are now negative.

WHA?!?!?!

Lupus and RA I expected to be negative, I guess, but never expected Sjogren's to be negative.

What am I to make of this? The lab is very reputable (Mayo) and even though I know any lab can make mistakes............

And even more confusing this doc put me on low dose prednisone and wants to move me to plaquenil in a few months. WHY should I take this if I don't have anything according to his blood tests?

Do Lupus blood tests change like that? Do I or don't I have it? I think I need a new doc.....

Thanks for any insight-- I'm so much more than confused----and I sure don't feel cured, lol!!!

Teoti

[Joe S.]

Welcome to the forum. I do not have answers for you. I know that many of us here have negative blood tests.

[Pisces24]

I am a bit "at sea" myself with all the SJS stuff. I KNOW though you can test negative and still have Sjogrens and the symptoms.   And the symptoms vary so durn much with everyone. I think you need a better explaination from the dr - something in layman's terms so you'd understand.   Unfortunately, we've all learned you got to be proactive with your drs  and get yourself in the "treatment mix". Don't be afraid to ask questions. As far as changes, yes it can happen. I don't know about down but I've had some bloodwork numbers slowly creeping up for yrs. They will ebb and flow but slowly advance.

I was diagnosed March 2009 after "the specialist runaround" for 6 yrs. I figure I've had this at least 10+ years as my teeth started going to H about then.  Five cavities my whole life up until 10 yrs ago and now 3-5 a year. Sigh!

I don't get this positive and negative stuff. My immunologist told me normal ANA is under 40 and I am 2000+.  that tells you you have some sort of autoimmune disease.  Normal SS-A and SS-B  (SJS) is <19 and I'm 200+ .  My ologists are at a teaching hospital and I am very happy with them.  I get to listen into discussions too with the main dr and 1-2 interns on my visit, no god complexes there and they like puzzles.

With autoimmune, they want to monitor you in case something comes up and then they can catch it right away.  I've in the last year developed some small spots on my lungs that come and go so they are watching them.    I wish I could be more of a help but that is all my 2 cents worth. Good Luck!

[lynnmarie219]

Hi teoti and welcome to Sjogrens World!

As Pisces said.....your ANA is still positive so that shows that something autoimmune is going on....as far as the other tests....I'm not all sure what labs were run so I cant answer that for you. Your best bet would be to talk to the doctor and ask for more information and possibly a copy of a test results to better understand what he/she is talking about as they explain it to you.

BUT i do have to say that you are very lucky that your doctor is obviously taking you seriously in that you are being treated. You are being offered a low dose of prednisone and plaquenil. Many times docs wont offer meds at all until they show positive results on many tests for sjogrens....and plaquenil is the first drug offered for sjogrens (among other autoimmune diseases) and its also not uncommon for prednisone to be given in the beginning as plaquenil takes some time (3- 6 months) to take effect.   

Keep us posted....talk to your doc....and hang in there! We are here for you!

[Patze]

Hi Teoti,

Let me also welcome you to the SJS World and family! 

It seems that you've gotten good information already, and there's not much I can add.

Hang in there and I hope that you feel better soon.

Take care of yourself -

Patze

[Scottietottie]

Hi Teoti 

Just wanted to add a welcome. My blood has never tested positive for SjS but was mildly positive for lupus. I got dxd with lupus/SjS overlap because symptoms were all SjS. After being on Plaquenil my blood now tests normal. Rheumy says to keep going with the Plaquenil because it is obviously working.

Take care - Scottie 

[teoti]

Hi Joe, Pisces24, LynnMarie294, Patze and Scottietottie and thanks for reaching out.

I do have a copy of my most recent labs which is good, but like I said, confusing.  I did ask the Dr. how is it possible that can I test positive for sjogren's on one test (albeit 10 plus years ago) and now test negative he was honestly a bit dodgy in his reply. Thought perhaps it was a mix up or a bad lab-- and the fact that these tests were run through the Mayo labs made them definitive. He basically said he didn't know why.

Long story short, I don't think I'll stick with them rheumatologist. He's quite a bit older and I noticed a new, younger one was just brought into the practice, so I'm guessing he's getting ready to retire. As long as my symptoms are manageable with lifestyle changes and otc items I can wait to start plaquenil.  

Prednisone did not sit well with me (so many side effects and limited return despite the initial boost) , so I'm phasing that out.

Anyone else have trouble with Prednisone? I'll do a search as well, but just curious.

eta: Oh, silly me! 22 Pages come up on a prednisone search! 

Teoti

[colleen]

I know this post has been up awhile I just had to jump in and comment...... I am right there with ya....and it's getting soooo frustrating. I just visited my third Rheumy within two years. I went for a third opinion. my first set of labs Positive ANA done got me  a referral to  Mayo who then did their own labs. Mayo labs positive Ana, ENA (SSB) And Moderately high Anti-Rnp my Rheumatoid factor was negative.

Then I went to a different Rheumy who ran all the Labs again who said My RF was now positive  and told me frankly the Rf numbers will never change to Neg. but my SSB is neg. however  he stated he couldn't rule out Lupus due to a positive Histone antibody.

six months later (last week) went to another rheumy from Mayo he ran all the tests again and  he states  I have  a low positive ANA Neg SSB, and SSA Neg RF factor now and neg Lupus . even though I have most all the symptoms of Sjogrens and have had positive/negative test results this doctor said  "I cannot give you any definitive diagnosis of any kind none whatsoever but I want you to take plaquenil." and then said beside most SJS patients always have water with them and I said i left it in the car..... I am also frustrated with the diagnosis process. does anyone know of any doctors familiar with this in the Phoenix area.

Any way hang in there we are all in this together.
Hugggggs Colleen

[teoti]

Colleen, Thank you SO much for sharing this. My doc made it sound as though lab results from Mayo were iron clad indisputable so seeing yours make me feel less crazy. And thanks for the hugggs. SO sick of Doctors I can't tell you.

Sorry, too,  Kamie for all you're going through.