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Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!



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#1 Clementine


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Posted 14 May 2007 - 02:49 PM

I am trying to understand antibodies not just in relationship to Systemic Sclerosis, but in general. I've read the site and I still really do not get it. How many antibodies are there...

I am trying to distinguish the difference in Scl-70, ACA, and nucleolar, which I believe can be positive or negative with Scleroderma. For instance, I have always thought I am neg. Scl-70, positive th/to (what is that classified as anyway?) and high ANA. I promise I will talk to my Dr about this...but until then, please help!

Can anyone offer some insight? I will have so many questions for my Dr. in a few months. When will the questions end? I've had this diagnosis for two years and I am still learning.


#2 susie54


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Posted 14 May 2007 - 03:39 PM

I have a question also Jenifer if someone can answer about antibodies. Can they change over time and evolve into other antibodies. Say you had SM-RNP, could it change over time to anti-centernome? Susie54

#3 americanmike


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Posted 14 May 2007 - 04:21 PM

Hi Jennifer--

I'm not a doctor so take this with a big caveat. Here's what I've read.

Antibodies are proteins in the immune system. They come from Immune cells in the blood and bone marrow. They are targeted towards invaders, germs, and sometimes your own tissue (autoimmunity). The immune system makes many many different kinds of antibodies. Scl-70, ACA, and Anti-Tho are just common ones for Sclero patients.

In scleroderma and other autoimmune diseases there are certain patterns doctors have discovered over years of research and observation. Patients who have X antibody usually have Y symptoms. Since scleroderma is so varied a disease... studies have used antibodies so Dr's know what to expect. It's kind of a way to group you and understand you better. Understand where you might be headed and what to expect, and how to treat you.

It's not 100% certain or automatic, just a way to say this sometimes happens or many times this happens etc. Nothing is certain. Some patients with Scl-70 have little skin involvement... even though it suggests a tendency towards diffuse skin involvement.

Nucleolar refers to a pattern during laboratory testing. It is not an antibody in and of itself. It just describes the way the ANA test is observed. Again certain patterns have been observed. Patients with Nucleolar staining patterns of ANA test tend to have ... xyz. Nothing is certain just tendencies and probabilities.

Symptoms and blood tests can give you a good idea of what pattern of scleroderma you have ( I don't mean limited vs. diffuse... More specific info like lungs and heavy skin or mild disease with myositis, etc).

I hope this helps a little.

Michael in Florida

#4 Clementine


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Posted 14 May 2007 - 04:31 PM

Wow, that was very valuable information. You definitely cleared it up for me. Thanks for taking the time to help.

#5 barefut


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Posted 14 May 2007 - 07:29 PM

Yes Thanks Mike,

It's always good to know where you're going......I think?

This article and your explanation of it opens up a lot of questions for me to ask my rheumatologist at next visit. (She might even think I'm purdy edyoukated. :lol: )

It's very interesting stuff.


#6 jefa


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Posted 14 May 2007 - 09:23 PM

As usual, Mike is here with a thorough explanationn (Thanks, as always). It may be useful to view this graphic representation with everything laid out in columns to see the different test results and what they may mean: Auto-Antibody Patterns

To answer your question, Susie, the antibodies don't change into other types, however test results for the various antibodies may be different at various times. Also, your doctor may have included a broader spectrum of tests trying to pin down the results. It is possible for the pattern to change in testing for a single antibody (i.e. speckled to nucleolar).
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 WestCoast1


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Posted 15 May 2007 - 04:02 AM

Hello Jennifer,
I have also found that some Dr.s have a tendancy to use specific labratories because these are such sensitive tests....numbers can vary from lab to lab depending on how carefully they were run.

For instance I had one lab run my Anti Thyroid Antibodies and it was 365 and at another lab just a week later it was 460, but when run again at the previous lab the test would still be 365. I think it only matters to some doctors to get the exact numbers.


#8 nan


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Posted 15 May 2007 - 04:15 AM

Thanks for that site. That table really helps you get a clear picture!

#9 Sweet


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Posted 15 May 2007 - 05:07 AM

Oh thanks Carrie for finding that chart. I was searching for it! I have always found it helpful in this crazy confusing disease.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#10 Margaret


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Posted 15 May 2007 - 06:53 AM

<<I have also found that some Dr.s have a tendancy to use specific labratories because these are such sensitive tests....numbers can vary from lab to lab depending on how carefully they were run. >>

Hi, Everyone ,

We are running into this problem with autoantibody testing with Gareth. The Ca. labs (twice) said his Anti-RNA Polymerase 1/111 tests were positive but Dr M's lab said they were negative. His ACA was negative before, yet Dr M's lab said it was 'equivocal' and, then, positve when done the second time. Who do you believe?!?!? If a specific autoantibody is negative one time, can it change to positive the next time and visa versa? Dr M's lab is continuing to run 'immunoprecipitation' testing.....or unusual sclero tests. The common antibodies for sclero are neg. at his lab, but positive from Ca. & our local lab.

Auto-antibody Patterns from the Sclero Forum are from 1998....are they all still being used today? Gareth's ANA is positive, speckled pattern and his rheumatologist said that didn't mean anything. Just curious.

Take care, Everyone.

PS......Mike...thanks for taking the time to put 'things into English' . So many of your posts make many medical tests/procedures more understanding.

#11 americanmike


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Posted 15 May 2007 - 06:57 PM

Labs and differing test results are really common. In fact, one ANA test I had was 1/640 and 2 weeks later another test said the ANA was negative. Over the past year and a half I've had 7 ANA tests. 3 positive and 4 negative. All the positive tests were done at leading Universities, or private labs. The 4 negative were all done by Quest or Lab Corp.

The big labs have recently (within the past few years) made the ANA test a computerized test where a machine reads the blood and results. This used to be a very labor intensive and time consuming blood test. I would'nt be surprised if in trying to make it automated and cheaper it has become less accurate.

I mean how can you go from 1/640 to completely negative in 10 days! My completely unsubstantiated theory...I think if you're ill and not a healthy person, go with the higher numbers or "sicker" numbers. It just seems like the tests are more likely to miss the data and register false negatives, than to see things that aren't there and register false positives or inflated positives. But once again, I'm not a doctor. And I've never even read that anywhere. So it's just a wacky theory.

Bottom line the labs are pretty awful.

Does anyone watch "House." So many times House says, "test it again" or keep trying. It seems like medical tests are known to be really iffy.

#12 relicmom1


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Posted 16 May 2007 - 01:54 AM

Ok, here's what happened to me once. As most of you know, I have a positive ANA with a high titre. Some times higher than others and I was told that was because the amount of the inflammation. One time my ANA came back totally negative, now I didn't understand this but my rheumatologist said " You're negative this time, your CREST has gone away"????????? Now this was several years ago and all of the ANA's I've had since have been right up there with the rest of them. I couldn't believe it when he said that and that he didn't question the accuracy of the results. Was I wrong to get upset? Is it possible for scleroderma to "just go away"????
Peace :)
Barbara aka relicmom1