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Biomarker for Diffuse Scleroderma skin has been discovered!


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SCL-70 blood test


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#1 Teatime

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Posted 17 April 2012 - 06:55 PM

I was wondering about how indicative this test is? Several years ago, my first rheumatologist ran this test and it came back positive. He decided to repeat it to see if it was a fluke and it came back positive again. I was concerned but he told me not to worry unless/until I had more definitive manifestations of sclero. Well, now I do, but I moved far away and have been without a good rheumatologist!

BUT, I found out today that we're getting a new rheumatologist in my city! She will be starting July 16 and will be in the same physicians' group as my excellent internist! My internist has been gathering data for a rheumatologist to see and, hopefully, it will aid in my care. Does SCL-70 positivity change over time? Should I talk to my internist about running it again?

#2 Kathy D

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Posted 17 April 2012 - 11:46 PM

Hi TeaTime,

I am sorry you might have scleroderma. From what I understand from being diagnosed myself is that testing positive for SCL-70 does not necessarily mean you have it, but that the autoimmune gene must be "triggered" or turned on to make one sick, and it's the clinical signs that confirm the diagnosis.

Wishing you well,

Kathy
Diffuse Scleroderma Diagnosed March 2009

#3 Joelf

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Posted 18 April 2012 - 12:54 AM

Hi Teatime,

As Kathy has stated, it can be the case that the blood tests show positive antibodies for Scleroderma, but as some of our members can testify, they never go on to develop the full blown disease. Equally, it's also possible to have negative blood tests and yet certainly have Scleroderma so you can see that the diagnosis is by no means straightforward.

I've included a link for you on Autoantibodies to give you some more information. I have the positive antibody Anti-PM/Scl which can be indicative of Polymyositis but thankfully so far I haven't developed it.

Kind regards,

Jo Frowde
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#4 Amanda Thorpe

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Posted 19 April 2012 - 02:07 PM

Hello Teatime

Good question and I understand that bloodwork can change over time. What I do know is that people can have a positive SCL-70 and NOT ever display any scleroderma symptoms equally people can have a negative SCL-70 and have active scleroderma like myself! Have a look at our video diagnosis of scleroderma as it makes the point that blood tests should not be solely relied upon to make a diagnosis or rule one out.

Take care.
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#5 Teatime

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Posted 21 April 2012 - 11:41 AM

Thanks, all! Unfortunately, the rheumatologists around here are all about the labs. If something doesn't fit a specific lab profile, it doesn't exist. Perhaps even worse is that they won't even do extensive labs -- they base everything on the ANA and double-strand DNA. My nails and fingers are in terrible shape but no one has done the nail capillary test; they don't even do a physical examination. It's just ask questions and run basic labs.

The reason I asked about my positive SCL-70 results and whether that changes is that I doubt a rheumatologist here will run it again. At that time, my ANA was positive and now it's negative. Since I've shown a negative ANA, they won't delve any deeper. My internist told me Thursday that she finds it utterly ridiculous that they won't do anything and will even deny disease when I've been on powerful immuno-suppressants for more than 6 years and my history and previous labs show, in her opinion, mixed connective tissue disease at the very least.

On Monday, I'm having a radiology guided injection into my hip. I'm not sure this is going to help much because I've got terrible pain in both hips from, IMO, the sacroiliitis I was diagnosed with several years ago. But an MRI showed a labral tear and subsequent cyst formation in my right hip so that's what they're acting on. In the past two years, I have had 3 orthopedic surgeries and 2 procedures. I've also had one lengthy heart procedure to try to stop my serious and nearly constant arrhythmia and two GI procedures, as well.

:lol: Sorry for sounding cynical and upset. This past week, I've once again had two doctors keen to operate on my back and joints. I also found out this week that my insurance won't pay for me to see a really experienced rheumatologist in Dallas. We're getting a new rheumatologist here in July and I have to wait to see her -- and hope she's thorough and competent!

#6 Amanda Thorpe

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Posted 21 April 2012 - 02:25 PM

Hello Teatime

You may well have to go armed with evidence that blood work isn't the be all and the end all and you can take it from this site. You may have to challenge them which is never easy. I hope the new rheumatologist in July works out, if not can you pay to see the specialist in Dallas even just once?

Take care.
Amanda Thorpe
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