Do the other antibody tests, besides ANA fluctuate?

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lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/13/2008 3:07 PM (GMT -7)   
I'm wondering......Rheumie retests for the other antibodies (Sjogren's, SLE, RA) regularly and repeatedly, despite that the only one that has come back positive in 1 1/2 years is the ANA, and it seems to climb higher with each test, (with 3 different patterns)  I'm assuming she's waiting for something else to show up or she wouldn't keep testing....  I'll see her in 3 weeks, and am getting my questions in order.  Any help would be appreciated.
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Leigh1978
Regular Member


Date Joined Sep 2008
Total Posts : 35
   Posted 10/13/2008 3:52 PM (GMT -7)   
I think these tests do fluctuate. I've had 2 rounds of blood tests in the past 2 months, and the results have changed. Initially, my ana, ds-dna/anti-ssa & ssab were all positive. I had those tests done when my symptoms first started, and I'm assuming I was in some sort of flare. 4 weeks later, I was retested and now my anti-dsdna is normal. Doc said that the change happens.
Not sure if this has helped, but I am under the impression that results do fluctuate over time.

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 4:10 PM (GMT -7)   
When I was on Imuran, my ANA came back negative, despite being highly positive for every other test. My RA factor also decreased while on Imuran.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/14/2008 10:51 AM (GMT -7)   
Thanks guys....that helps.  I've never been in an acute flare when the tests were done - maybe that would make a difference.  -Lucy

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 10/14/2008 1:46 PM (GMT -7)   
Hello

UCTD is not a diagnostic limbo. It is a definite diagnosis. It means there is definitely an autoimmune connective tissue disease present but there are no specific antibodies for any individual disease. This would mean no anti Ro or anti La for Sjogren's, no ds DNA or anti Sm for lupus or specific skin or kidney problems and so on. Your question has to be " Why are you not treating me with disease modifying medicines ?" That would be Plaquenil usually. Ibuprofen is not the first choice of NSAID for lupus because there is a much higher risk of aseptic meningitis in lupus patients taking it.

I am quite sure that many doctors would diagnose lupus in such cases. All that is required for an SLE diagnose is an elevated ANA and enough symptoms even if they are not specific. Sometimes other possible causes for a moderately elevated ANA have to be ruled out. Above 1: 360 is considered high enough by most doctors. 1:160 would be enough for most of there was weighty additional evidence it is caused by an A-I CTD.
Cases of UCTD can remain as they are or sometimes develop over time into a more specific disease when new symptoms appear and new antibodies.
The answer to your question is that yes,antibody levels can vary but most are not regarded as indicators of disease activity ANA is not regarded as an indicator of disease activbity but uncontrolled disease might be expected if it is always rising and often ANA lowers or disappears when the disease goes into remission.
You need a second opinion if at all possible. Otherwise she needs to explain herself!

Diagnosis and treatment are by symptoms not blood work

HTH

BB

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/14/2008 1:49 PM (GMT -7)   
BumbleBee1 said...

Diagnosis and treatment are by symptoms not blood work


LOL! That really varies from doctor to doctor. Some insist on lab work, which is ridiculous, but that's what they do -- those are the doctors to avoid! shocked

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/14/2008 2:47 PM (GMT -7)   

OK - More questions:  Bumblebee - anti LA & anti Ro?  I've had the following tests besides ANA:

DNA screen

Rheu Factor Qual

Anti-CCP IgG

SS-A-AB

SM AB

SM/RNP AB

All were negative.

I looked on labtestsonline.org and the last three came up as something to do w/ EBV!?  I'm guessing the acronyms are just different for some labs....but do you see or recognize what you would expect to see?  And to be fair, I looked back at the copies of my records which I obtained recently, in which she states she "discussed the possibility of an UCTD".   As I recall, she told me that was the dx for now, based on nothing more definitive in the labwork.   The last ANA in May was 1:1280.   She offered me Plaq at my initial vist (I just wasn't ready).  At the May visit she again really emphasized how safe it was - but I wanted to wait and see what the bloodwork showed.   Since the ANA had doubled again I expected the Rx, (and I was ready) but the nurse said she wanted to wait.  So I'm confused. 

This would be easier if she was in town - the traveling complicates matters.  And when I finally get those 15 minutes with her, I have a hard time getting all my symptoms, questions and concerns laid out coherently.   Ok - enough already - you've all been there. 

I'll need to relate to her my flare in July, and September and I'm hoping for time for 3 major questions: 1) What is it you think I have beyond fibro in the AI dept.?  2) Is it time for Plaquenil - why or why not? and 3) ....well, I can't think of the third.  Any ideas?

Thanks  - I appreciate all the responses and just wish I'd been "clued in" about this forum long ago.

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 10/14/2008 2:56 PM (GMT -7)   
:-)

"LOL! That really varies from doctor to doctor. Some insist on lab work, which is ridiculous, but that's what they do -- those are the doctors to avoid! shocked"

Right ! Of course blood work, that is auto antibodies, has an important part to play in diagnosis of the primary disease, as confirmation and additional evidence, as well as in follow ups. A doctor who goes only by blood work is a bad doctor period. The risk is they will deny any objective reports of things that can't be measured, such as pain. Lab work is important when it shows up hidden actual disease such as anemia, low white blood cells and so on.

People can be very seriously ill and not even have an elevated SED rate.
But "UCTD" is a definite diagnosis, and all that's needed for an SLE diagnosis is symptoms and an ANA. Although i am not a health care professional of any sort, my information comes from totally reliable sources such as Dr Wallace.
I hate to see people not being adequately treated, suffering probably more than is necessary because of what appears to be medical ignorance, at best misinformation

HTH
BB
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