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2nd Positive SCL-70 - no symptoms


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#1 SuzanneL

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Posted 16 August 2010 - 01:19 PM

Hi all,

I just started here recently - hello!! My background again - 45 year old female - went to prestigious rheumatologist at NYU here in NYC just for a baseline because my mom has thyroid disease - wanted to see if I was headed that direction as well. Much to our shock, I had a positive SCL-70. he asked me back into office to look at me again as he said there was nothing in my first visit to indicate sclero. He said I have no clinical symptoms. He performed had a nailffold test - was normal - and he wanted to re-test the blood at a different lab - but felt I had nothing to worry about.

The 2nd test just came back positive again, but in a much smaller reduced number . He said up to 1.0 is normal, and my 2nd test came back a 3.0...normally patients with true scleroderma are in the 50s-75 range when they are positive for SCL-70. He said he feels there is nothing to worry about at all. He wants me to do an echo cardiogram to check my heart. He feels that will come back totally normal and then he will follow me every 3 months. After a year he feels we will be in this same spot and be able to say "no scleroderma" just a weirdly positive antibody. He said he has patients just like me that he follows and he truly feels that this will not become anything.

He begged me not to worry...

What do you guys think? sound right? OK?

I also have a call into Johns Hopkins awaiting an appt time from them - I will keep that for a 2nd opinion for sure.

#2 Jeannie McClelland

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Posted 16 August 2010 - 09:46 PM

Hi Suzanne,

As was mentioned before, a positive Scl-70 doesn't get you a diagnosis of scleroderma, you need to be symptomatic. Sometimes there isn't a zebra in the herd of horses~ Just do a happy dance that the rheumatologist isn't worried and don't stress yourself out over something that might never happen. All you do is increase your risk of stress-related problems.
Jeannie McClelland
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#3 janey

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Posted 17 August 2010 - 02:38 PM

Ditto on what Jeannie said. You might check out our section on scl-70 antibody. The first abstract asks the question "Is it Possible to Not Have Scleroderma While Testing Positive for Scl-70?". The answer is yes. It is also a fact that not everyone with scleroderma will test positive for Scl-70. I have systemic scleroderma and have a negative scl-70. So it's just an indicator that you need to keep an eye on things, but is not a positive diagnosis. Your doctor certainly seems like he is covering the bases to ensure that you don't have systemic involvement, and the 3 months follow-ups are a great idea. Sounds like you have a good doctor.
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#4 Jeannie McClelland

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Posted 18 August 2010 - 02:05 AM

Ditto on what Janey said (what a team we make!). I also do not test positive for Scl-70. I meant to mention that before. An every 3 month check-up is being super-cautious and having the echo certainly gives you a very early baseline measurement should you ever need it. Really, your doctor is telling you the truth and not just trying to calm you down. From everything I've read (and since I help research the scleroderma news articles, that is an awful lot), what he is telling you is 'pukka gen'.

So deep breaths and press the reset button. ;)
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
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International Scleroderma Network

#5 Elizabeth28

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Posted 29 August 2010 - 06:21 PM

Dear Suzanne,

I'm in very much the same boat as you. I tested positive for ANA and scl-70 in fall 2008 and, until today, have not shown any definitive symptoms of the disease, or any other autoimmune disease. I was checked over thoroughly by one of Canada's top rheumatologists - my nailfolds, skin thickness, lung X-rays, etc - and she declared me to be scleroderma-free on two separate visits in 2009. I've since moved to Pakistan, where I'm working, and she cautioned me not to worry about seeing a rheumatologist until and unless something major happens. So it's good news, but still frightening. I went through a lot of emotional ups and downs the first year, in great part because the available literature paints such a dire picture.

I've posted before on Sclero forums, as have other people who've tested positive but have no symptoms, and can send you some literature I've found showing different populations can have unexpectedly high Scl-70 levels (e.g. farming communities in rural and urban Poland - where the levels run up to 6% of tested individuals), but no disease.

Please keep heart and relax as much as possible (though I realize that's often easier said than done!)...

Best wishes,

Elizabeth

#6 SuzanneL

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Posted 30 August 2010 - 08:07 AM

Hello Elizabeth - thank you!! I had seen your postings before and truly wondered how you were doing! Glad all remains well.

Yes - this is hard. I am 2 months into this now... some days are Ok and others I get worked up with "what ifs". And who knows how long I have been SCL-70 positive - it could have been years - this was my first rheumatology blood panel ever. My rheumatologist seems unconcerned, says he cannot say 100% for sure but feels this will all come to nothing. That is my hope as well of course. Oddly my ANA was neg - my SCL was pos ?!

I had a lung CT scan in June - 2 weeks before the positive SCL-70 test, for something totally different - that was clear thankfully. And I just had an echo done of the heart and I await the results, My rheumatologist is on vacation - ugh. I also go to Johns Hopkins Oct for a 2nd opinion with those experts.

I see that this will be a process - which I am not very patient for ! but I have to go through it... thanks for your reply - so appreciated!

suzanne