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Biomarker for Diffuse Scleroderma skin has been discovered!


High Anti-Centromere Antibodies, but Zero symptoms

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#1 eastcoastmom



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Posted 20 August 2014 - 01:23 AM

Hi. I'm new here. I was just wondering if anyone else was in the same boat I'm in.


There has never been autoimmune disease in our family, until my parents had their 3 daughters. Then one by one each of us girls got one autoimmune condition or another. My one sister and I have Hashimotos and our other sister has Graves. My sister who has Hashimotos, also found out last month she has Sjogrens. She was also diagnosed by the Mayo Clinic 35 years ago as having Lupus, but she has never had a flare in all these years! She was SO scared when she was diagnosed. She was 21 and had just gotten married to my brother in law. I can still remember sitting in church next to her, as she silently cried while my brother in law had his arm around her. They had asked the church to be thinking of her. She ended up never having any flares or anything.


Oddly enough, I was diagnosed with ANA 1:80 Speckled and a low positive Anti DSNA antibodies 12 years ago, but I never developed Lupus symptoms. I found out last week those Anti DSDNA antibodies are now completely negative, I don't have Lupus, but do have a high Anti-Centromere antibody level. but again, I have zero symptoms. The only reason I even know I have these antibodies was because I had a routine physical last week, and I said to my doctor you know the rheumatologist said to me 12 years ago if I was ever going to develop Lupus I would within 5 years, but I never did. Could we just run a simple ANA and find out where I'm at? She said better yet let's run this new ANA Cascading Reflex test that tests for all sorts of antibodies. I said okay, that sounds like fun.  lol


But then 6 days later, the nurse from the doctor's office called and said over the phone that I had (yes she said I specifically had it, not that I had the antibodies for it) CREST syndrome. I said what in the world is that? She said it's when you have Raynaud's. I said said I don't know what that is, so she explained it. She then said but the doctor said since you don't have any symptoms she will not refer you to a Rheumatologist. I said that's fine.


I'm not that worried about Scleroderma for some reason. I guess because I have a high titer and nothing has happened so far. I'm not going to worry about something that may never happen. It's just weird, to me, to find out I have all these ghoulish antibodies floating around inside.


The only reason I had an ANA ran 12 years ago was because I had recurrent miscarriages, over and over and over, 7 of them. Once I had the positive ANA and at the same time found out I had Hashimotos, I went on Synthroid and then to a reproductive immunologist who gave me prednisode and Aspirin and bam, I had a beautiful baby girl. :)


It's nice to meet all of you here. Look forward to hearing from you.



#2 Shelley Ensz

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Posted 21 August 2014 - 09:26 AM

Hi Ann,


Welcome to Sclero Forums.  I'm especially delighted to hear about your success in having a beautiful baby girl. Congratulations! :yes:

We have a thread covering a similar topic here that you might be interested in, Centromere Antibodies?  


Which of course might raise more questions than answers. I'm sure others will provide even better input, but for now, I just want to say, welcome and send my best wishes.



Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf


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Posted 21 August 2014 - 11:14 AM

Hi Ann,


Welcome to these forums!


It does sometimes happen that the blood tests appear positive for Scleroderma, or other autoimmune diseases, but the disease never manifests itself and vice versa as many of our members can testify.  Antibodies are really only a small part of the diagnosis, which should also be made on clinical symptoms as well.


I do think that your attitude of not worrying unless you do develop any more symptoms is very sensible; as you say, it may never happen! Instead, you can enjoy having time with your lovely baby girl. :emoticon-congratulations:


Kind regards,   

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