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New to Forum - Positive ANA Centromere 8.0 (1:128)

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#1 jayt10



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Posted 09 October 2014 - 05:12 AM

Hi Everyone:


I am new to this forum...not sure if I posted in right box or not.  Sorry if I did.  I'm still learning how this all works.


I had severe dry mouth the last month (thought it was from an increase in my meds - which cause dry mouth) and I came down with oral thrush.  I couldn't believe I got it simply from my meds, and since autoimmune runs in my family (my grandma, mom and three sisters) and I told my doc to run an ANA test, at my sister's urging.


I came back that my Anti-Centromere was at >8.0 titer 1:1280.  Everything else was normal.


My doctor said it was scleroderma - or CREST syndrome but that I had to see a rheumatologist for further diagnosis.


Here's the thing, I only have dry mouth.  I've been on Nexium for gerd issues for years.  That's the only symptom I have.  Could this be the beginning of scleroderma?  I don't know anything about this and am a bit nervous and scared.  Can't get in to see the specialist for another month.


Just wondering if anyone could help me until I get to doctor to ease my nerves or share their story if similar.


Many kind thanks everyone,



Cleveland, OH


#2 Joelf


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Posted 09 October 2014 - 11:53 AM

Hi Judy,


Welcome to these forums!


I'm sorry to hear that you've had some worrying symptoms; I know how scary it can seem, particularly when you're fumbling in the dark, so to speak, and are not sure of a diagnosis.


I'm afraid that I can't predict from your symptoms whether you have (or are likely to have) Scleroderma; you really will have to see your rheumatologist, where it's likely more tests will be needed to arrive at a diagnosis. We do recommend, if possible, that our members consult a Scleroderma expert, not least because Scleroderma is a very complex disease, with many little idiosyncrasies, of which some rheumatologists are unaware. It really does require treating by someone with the specialist knowledge to understand it.


Please do let us know how you get on with your appointment.


Kind regards,

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#3 Shelley Ensz

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Posted 10 October 2014 - 10:52 AM

Hi Judy,


Welcome to Sclero Forums. I'm sorry you have concerns about possible scleroderma. As it happens, anticentromere antibodies can also occur outside of scleroderma, even with Sjogren's syndrome, and a good percentage of blood tests are lab errors. Plus scleroderma is diagnosed based on symptoms, never on labs alone because they can be misleading. Usually Sjogren's starts so insidiously that it is an average of about 10 years from onset to diagnosis (and 6 years to diagnosis for scleroderma).


I don't know if I said that last bit to scare you or assure you. Which way did you take it?  Sometimes it's hard to tell the difference, as it can be reassuring to think you can be sick so mildly as to not even be diagnosed for many years, but it can also be alarming to think of being sick for a decade without being diagnosed.


I'm not a doctor, in fact I have no medical training at all. Medications are a frequent cause of dry mouth and heartburn is very common in the general population. And, antibodies are very common in healthy relatives of people with autoimmune diseases.


I wish I could just say, don't worry about the blood test. But you do need to be examined by a rheumatologist to see what the test means, if anything, in light of your present health. Do keep in mind that it is very common and not the least bit unusual for relatives of people with autoimmune disease to have some antibodies, and even develop one or two symptoms of any autoimmune diseases, without ever getting any full-blown version themselves.  But it can take years of observation to figure out if you're one of the lucky ones in the family, or not.


Keep in touch and let us know how things go for you.



Warm Hugs,

Shelley Ensz
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#4 Amanda Thorpe

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Posted 10 October 2014 - 01:19 PM

Hello Judy


Welcome and I also come from a family of people with autoimmune disease, unfortunately I am also the one with scleroderma, even though my blood test results are negative for ANA & SCL-70, rheumatoid factor normal. Really? Yes, even after 7 years including myocardial fibrosis and heart failure.


My diagnosis was totally symptom lead, even though I only had one at that time...the mother of all symptoms...skin involvement...as in 60% of my body covered by tight, hard skin. I walked like Frankenstein's bride I was so stiff and unbending, almost every joint was restricted.


Dry mouth and GERD can be symptoms of scleroderma, but can also be found in the general population so I would suggest you wait until you see the expert and take there word on whether you have it or not. Positive blood work doesn't mean you have scleroderma or anything for that matter.


Take care.

Amanda Thorpe
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#5 Sweet


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Posted 13 October 2014 - 09:19 AM

Hi Judy! Welcome! So happy you have joined us. You've come to the right place for support, friendship, and accurate information. 

You've been provided with a couple of good links, I do hope you find them to be helpful. 

Warm and gentle hugs,

ISN Support Specialist
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