Posted 26 August 2011 - 11:32 AM
Posted 26 August 2011 - 02:42 PM
Welcome, I hope your daughter is doing ok. I'm not sure how it is measured with a 4.8 (2 digits?) but it might just be the way they measure it where you live. Is it definitely the anticentromere pattern they listed that way? If so, someone else will chime in and will be able to help you decipher that I'm sure. Ours in Canada are listed as 1:40 being 'normal' although some labs elsewhere I believe might say 1:60 is also normal. That would mean anything above that might or could be a positive reading for scleroderma. I do know that bloodwork alone, however, is not enough to diagnose this disease. My understanding is that they need at least 2 physical symptoms as well as positive bloodwork. That being said, some people never have a positive blookwork reading but have physical symptoms which lead to the diagnosis.
Posted 26 August 2011 - 09:12 PM
Snowbird, I think you may be referring to the ANA test. I know with myself, even though the ANA test came back with a pattern (which wasn't the centromere pattern), they still did other bloodwork which somehow included the anti-centromere antibody. So I'm not quite sure how that works, because I had wondered why the ANA wouldn't just have a "centromere pattern" if that was the case.
So I think somehow it's a different test. But I have no idea about what the levels would be (I was negative for the anti-centromere). Kara, I think if you were to search online for the "anti-centromere" antibody test, you may find information about what levels are considered "normal", or what it means if they are not.
I'm sure someone else on this forum will be able to fully answer your question.
Posted 27 August 2011 - 02:52 AM
I can't quite remember exactly all the bloodwork results which showed up when I was first diagnosed. I had clear symptoms of CREST/Limited and the ANA came back as Centromere pattern with a titre of 1:1280. I had more ANA and
ENA's done about 2 years ago - I can't remember the ENA (extractable nuclear antibodies) but the ANA was 1:640. The diagnosis is made on clinical signs in conjunction with the ANA result. The lower ratio more recently would indicate to me that my disease is less active - which is the case clinically.
It could be that different measurement systems are used which give different numbers in the result but I have only ever read of the ratio measurement.
Posted 27 August 2011 - 07:19 AM
Thanks for keeping me straight. I think you're right. It seems like they are just linked somehow and I thought it was one and the same thing.
It sounds like the anticentromere determines if there is an autoimmune problem and then they narrow it down with the ANA and the pattern to figure out which disease and the amount of the autoantibody that is actually attacking the body (ie, 1:640 = the amount/dillution + we'll just pick the centromere pattern for CREST to keep it simple)...and they would use a different ANA for Lupus, other illnesses, etc. Does that sound about right?
Thanks again, Snowbird
Posted 27 August 2011 - 10:57 AM
A warm welcome to these forums for you and your daughter!
I'm sorry to hear that your daughter is being diagnosed with Limited Scleroderma. I have this myself, so can understand the worry that you're experiencing. There's a link here to Autoantibodies and also to Anticentromere Antibodies (ACA) which I hope you'll find interesting and helpful.
Scleroderma is a very complex and difficult to diagnose disease and the diagnosis shouldn't be totally reliant on the antibodies shown in your daughter's blood tests. Some of our members have had negative blood results and yet have developed Scleroderma and others have had positive antibodies but never gone on to fully develop the disease. The diagnosis should really be made by a Scleroderma expert who fully understands all the idiosyncrasies of it.
I'm very pleased that you've found our forums and am sure that you will find a wealth of support and help from our community. I'm looking forward to getting to know you and your daughter and reading your future posts.
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Posted 28 August 2011 - 08:05 PM
I think based on what I've read, is that the ANA test is considered fairly generic; a high level can indicate autoimmune issues, and the pattern can sometimes help to narrow down some possibilities, but specific antibody tests are needed to confirm, I.e. Scl-70 for diffuse scleroderma, anti-centromere for CREST (although I'm not sure how that works because although it seems to be a pattern, it also seems to be a separate test from the ANA, but I could be wrong), and things like SS-A or SS-B for lupus or Sjogren's.
In my case, I don't have any positive bloodwork except the ANA with a nucleolar pattern (which is often related to scleroderma, but not always). A lip biopsy is what positively identified Sjogren's. But I think if someone were to have the anti-centromere antibodies, it would be quite indicative of CREST if they were showing some signs or symptoms. I believe it would be enough for a diagnosis.
Posted 28 August 2011 - 08:39 PM
The American College of Rheumatology (ACR) criteria for the classification of systemic sclerosis require one major criterion or two minor criteria, and although they state that the major criterion is 'proximal scleroderma' and minor criteria are:
- Sclerodactyly (typical scleroderma skin changes, limited to only the fingers).
- Digital pitting scars or a loss of substance from the finger pad
- Bibasilar pulmonary fibrosis visible on standard chest x-ray and not attributable to other lung diseases.
I think a lot of times the diagnosis is made on the basis of clinical history from the patient and the doctor's experience and they do take into account lab results as long as they are accompanied by what the particular doctor sees as a typical scleroderma constellation of symptoms.
This makes it really frustrating for patients. What would I wish for other than a cure and complete remission of symptoms? One indisputable, totally reliable, easily obtained test that would say yes or no. Until we get that, it is best not to get too hung up on things like antibodies. A positive antibody result doesn't magically clear up the crystal ball and can't tell us what's going to happen.
Here's hoping for a long, happy, and healthy life for all of us.
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