Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Possible to have a high scl-70 antibody and not have diffuse sclero?


  • Please log in to reply
6 replies to this topic

#1 Ashleybritton

Ashleybritton

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 31 August 2012 - 01:03 PM

I just had a positive ANA test. I'm having a hard time understanding this because I feel perfectly fine. Is it possible to have a high scl-70 antibody and not have diffuse scleroderma?

Here are my results:
ANA 1:80 speckled homogenous pattern
SSA - 131
Smith antibodies -131
SCL-70 - 217
JO-1 antibody - 168
Histone antibodies, U- 122
C3 serum - 75 (low)
DS-DNA - 234

All results are high with the exception of the C3

I'm freaking out. We just had a brand-new baby and I want to watch grow up to be an old man.

Thank you

#2 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 31 August 2012 - 05:40 PM

Unfortunately, this is a very difficult disease to diagnose, so do not jump to conclusions. I am not a medical professional, but there is often a wait and see attititude. Even with diffuse sclero, the outcomes are very different.

Craig

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 31 August 2012 - 11:44 PM

Hi Ashleybritton,

Welcome to these forums!

I'm sorry to hear that you're feeling so worried by the results of your blood tests. As Craig has stated Scleroderma is a very difficult disease to diagnose and just having a positive ANA is by no means conclusive. We have members who have no positive blood tests at all and yet very definately have Scleroderma and others who show positive autoantibodies and yet never go on to develop the full blown disease. Scleroderma should really be diagnosed on clinical symptoms as well as blood tests by a Scleroderma specialist.

I'm presuming that you did have some symptoms which was why you were blood tested for Scleroderma? I'm in the UK and the complicated blood tests for the disease are only done if the first basic blood tests come back negative after symptoms of Scleroderma are apparent; which is what happened in my case. It was only when I was specifically tested for Scleroderma (along with other autoimmune problems such as lupus) that positive autoantibodies were shown in my blood tests; to further illustrate my point I actually tested positive for the Anti-PM/Scl antibody, but have not yet gone on to develop Polymyositis (yet! ;))

I can understand that you're feeling very worried, especially with a young family. However, I would suggest that you go back to your doctor / rheumatologist and ask him to explain the results of your blood tests more fully to you and he may be able to give you some reassurance or at least you will know with what you could be dealing with.

Do keep posting and let us know how you are faring.

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)


#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 01 September 2012 - 03:41 PM

Hello Ashleybritton

Jo's right, you can have bloodwork positive for scleroderma but never develop any symptoms, over the years we have had a number of people in your situation and they have not come back to say they had developed any symptoms. Have a look at our video about diagnosis of scleroderma which stresses that diagnosis should not be made on the result of blood tests only. I have diffuse systemic scleroderma BUT my blood work it negative for ANA, SCL-70 and my rheumatoid factor is normal although scleroderma is a rheumatic disease.

It must be frightening to get such news but as Craig said, you can only wait and see what happens, at the end of the day, that's what you would be doing if you had symptoms because even with the disease active no one knows how anyone will fare, what symptoms they will have and so forth.

Keep in contact with your doctor(s) and just live your life in the meantime as you may never develop any symptoms or you might, either way no one can tell you.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 04 September 2012 - 11:24 AM

Hi Ashley,

Welcome to Sclero Forums!

I'm a bit confused by your post. It is very unusual for doctors to run extensive antibody tests if someone is perfectly healthy, with no symptoms at all. So I'm more concerned about exactly why your doctors ordered the tests. Generally speaking, as I understand it, the antibodies mean nothing at all, unless they are accompanied by specific symptoms. Many healthy people exhibit antibodies of various sorts.

So it really does beg the question, either for you or your doctor: why were the tests run in the first place?

:emoticons-group-hug:
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.

#6 Ashleybritton

Ashleybritton

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 09 September 2012 - 09:03 PM

I just wanted to give an update. Because of the Smith and DS DNA antibodies I was diagnosed with SLE and have started taking plaquenil. My rheumatologist said I might develop scleroderma, I might not.

Shelley, my hematologist ran an ANA because I had pregnancy induced Idiopathic Thrombocytopenic Purpura (ITP) that would not resolve. I was also leaking proteins during pregnancy and still am, but only trace amounts at this time. It is all so shocking to me because I feel fine...no fatigue, joint pain, etc. However, my rheumatologist says we can not ignore that there is organ involvement with the ITP and protein.

#7 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 10 September 2012 - 02:10 PM

Hi Ashley,

Thank you for the further information. It makes MUCH better sense now that we have the back story on it.

I'm sorry you have lupus, and I sure hope you don't develop scleroderma, as well. I'm glad you don't feel sick...and I sure hope it stays that way for you, too. That must be a lot to deal with, on top of a new baby.

:emoticons-group-hug:
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.