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eastcoastmom

High Anti-Centromere Antibodies, but Zero symptoms

13 posts in this topic

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.

 

Ann

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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.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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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.

 

:congratulations:

 

Kind regards,   


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello.

 

Nice to see you all again. I just had another ANA test this past Wednesday, and my centromere antibodies are off the charts.  2 years ago my centromere antibodies were merely greater than 8, whatever that means. That particular result was from the cascading ANA test back in 2014. Well, on Wed I had just a basic ANA screen with pattern, and whereas I was 1:80 speckled 14 years ago, my ANA is now "equaled to or greater than 1:1280", which is the highest titer the lab tests.

 

So, what do I do? What should I take away from this? I know healthy people can have a positive ANA, but per my doctor, generally their ANA titers are low. Mine have increased exponentially. My doctor offered to refer me to a rheumatologist, but like I said on my previous post above, I still have no symptoms. I do think though I am heading in the direction of developing limited Scleroderma. This isn't fear or anxiety talking; it's common sense. My sisters and I have rampant autoimmune conditions, and now each of my sisters' children have autoimmune conditions too.

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Hi Ann,

 

Welcome back to the Forums, although I'm sorry to hear that you have had worrying blood tests.

 

The trouble with autoimmune conditions, as you know, is that they never follow a set pattern and the symptoms and blood tests can vary so much from person to person.

 

You do seem to have a pretty sensible, no panic attitude, but I think that perhaps it would be a good move to go back to your doctor and see if he could refer you to a listed scleroderma expert, rather than a general rheumatologist. With your family history of autoimmune diseases, he might suggest further tests. Also it is possible to have more than one autoimmune condition in overlap, which can sometimes mean you have several symptoms which can occur in overlap with other illnesses, which could warrant further investigation.

 

I do hope your daughter is well and she must be a great joy to you. :happy:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Aw, thank you so much, Joelf. Our daughter is the light of our lives. :happy: Thank you for asking about her, that means a lot to me.

 

I'll definitely look into your suggestion. And my doctor also said she's going to do regular liver enzyme blood tests now, on me. I had no idea Limited Scleroderma had anything to do with the liver (yikes!), but I do now. I thought it was just the CREST symptoms.

 

I didn't really make clear above that my titer of 1:1280 antibodies do indeed have the centromere pattern.

 

I think, with my age, and having had ANA"s for years now, that when (or if) I do develop symptoms that they won't be overwhelmingly severe, since it's taking so long to develop in the first place. I could be wrong, but I choose to look at it that way, until proven otherwise.

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Shelley,

 

I just realized I never responded to your warm welcome and your congratulations about our daughter. Thank you so much! 

 

If you are still on this board, please know I really appreciate your cheerful greeting and the link you provided.

 

Kindest regards,

 

Ann

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Hi Ann,

 

Welcome to the forums.  I just want to say that I have had positive ANA's in the past, along with minor old lady symptoms -  reflux and osteoarthritis. The first was homogeneous, with nuclear dots, found in  PBC (primary biliary cirrhosis).  All followup blood work for liver function was normal.  The second was positive, speckled pattern.  Both times, the doctors were looking for positive RA blood work (my dad had RA) and that was negative.

 

But, my son was diagnosed 10 years ago, at age 18, with + ANA, + anti-RNA polymerase 1/111, esophageal dismotility, and major internal issues.  He has also developed Raynaud's and Sjogrens over the past 10 years.   It seems that I got off easy, like it skipped a generation.

 

Keep posting and asking questions.  There's a great group of people here who have so much experience and knowledge.

 

Take care, everyone.

Margaret

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Hi Ann,

 

I thought I'd just toss in that in the presence of a lot of autoimmune diseases in the family, some members get various autoantibodies but then they might get no, or only a few, symptoms. It's possible that since it's so prevalent in your family, that you might have scored the antibodies without the illness.

 

You do make reference to having other autoimmune issues, so perhaps the antibodies are related to them, or they are related to scleroderma?  You can check with a scleroderma center about it, and see if it's worthwhile to have them see you now, in the apparent absence of symptoms. Bear in mind, of course, that symptoms are generally far more important than blood work for determining the presence and type of disease.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi eastcoastmom!

 

I am a 37 years old mom from Norway and I am in the same boat as you! High anti-centromere, but zero sympthoms. I have had high levels since 2008 (9 years), and still not having an symptoms at all. My doctor says I'll likely never develop CREST, since I've lived with the antibodies for so long without being affected. Some people are ANA-positive for just no reason at all.

 

Please let me know if you're still in here.

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Hi, rainbow.

 

I am a 39 years old woman in South Korea and I also have High anti-centromere without any symptoms, but only Raynaud's. I got a high level of ANA such as 1:1280 in 2015 and 250 anti-centromere.

 

I have been worried about my health since my doctor sent me to a big hospital in Seoul. I had various blood tests there recently and have been waiting for the result.

 

Thanks for sharing your experience. It is very helpful and a hopeful news to me.

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Hi Kelly,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing worries about your health and that some of your blood tests are showing a positive ANA.

 

I would just reiterate that blood tests are only a part of the diagnostic process and it is perfectly possible to have positive results and yet never go on to develop the full blown disease.

 

Unfortunately, we do not hold details of a listed scleroderma expert in South Korea, so I would suggest that you try and find a good rheumatologist to advise and treat you.

 

I do hope that the results of your recent blood tests will be much better than you feared and that you will feel a little more comforted once you receive them.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Joelf,

 

Thanks for warm welcoming and kind explanation.

I wish I will be smiling on Apr. 19.

Have a good day.

 

Cheers,

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