TheLupusSite.com banner

1 - 7 of 7 Posts

·
Registered
Joined
·
96 Posts
Discussion Starter #1
evening all

havent been here for a while but i often dip in and out. I would really appreciate some advice as i am pretty worried at the mo.

I have recently had my panel done again ie ana, ssa etc and all have come back negative apart from the ones i expected except an eqivical blood result on my SCL-70 test (which was negative before) needless to say i am terrified this is the onset of scleroderma. I have just got over coming to terms with my initial diagnosis and now feel a 2nd one is coming. I dont have any real symptoms apart from bad reynaulds which i have been told is part of lupus/sjogrens overlap but i would really like some advice. When my rheumie gave me my results I initially didnt see this result on paper and he said everything is fine and he will see me again in 6 months. It wasnt until i went to my gp and saw it on the screen that i became concerned (she didnt know anything about the panal and said if i was worried talk to the rhuemie)

any advice please!!!!!!!!!!!!!!!!!!


annie x:sad:
 

·
Administrator
Joined
·
10,167 Posts
Hi Annie,

It is my understanding that a positive SCL-70 test doesn't necessarily mean you have scleroderma. However it along with symptoms can confirm a diagnosis. I agree with your GP, if you are concerned you should check with your rheumy.

Take care,
Lazylegs
 

·
Registered
Joined
·
4,444 Posts
I have to agree with Lazylegs... a low positive on that antibody test does NOT mean you are getting scleroderma. I'm sure your rheumy is aware of the result, but considers it unimportant for now since you don't have any symptoms of scleroderma. Sometimes I can understand why doctors don't always disclose every result as without a doubt it can cause more worry than it may merit... but moreover I wish the doctors would disclose everything and *discuss* it with their patients instead of let them find out like this.

Furthermore, I read a study a few years ago which stated it is more common than previously thought for lupus patients to test positive for that antibody. Something like 25% of those who test positive for that antibody will have lupus (or possibly even higher). I will try to go hunt down the link...

Do your best not to worry and I hope you get in touch with your rheumy soon!
 

·
Registered
Joined
·
4,369 Posts
Hi Annie,

Sorry to hear that the test result has caused you concern!

Perhaps you can call your specialists secretary and ask for her to get the Rheumi to explain the result further as your GP has you a little worried!

I'm sure that they will respond to your conerns!

Take care and I hope you had a lovely weekend!
 

·
Registered
Joined
·
96 Posts
Discussion Starter #5
hi ladies

thank you for your kind replies, i have rung my rheumatologist secretary and will let you now what he says. I the meantime ill try not to worry and keep you updated.

annie x
 

·
Registered
Joined
·
4,968 Posts
Hi Annie,

My SCL70 antibodies are always very high yet I really do not have out ward signs of scleroderma. My Rheumy says that it is very possible that I may never get scleroderma but we will wait and see.

I think Maia is right as my Rheumy also told me a lot of folks with Lupus will test positive for these antibodies although Scleroderma will never show up.

Take a deep breath and try and relax. I am hopeful that your be ok as I will and we will never get this horrible disease.:wink2::wink2::wink2:
 

·
Registered
Joined
·
1,835 Posts
Hi:

I am so sorry you have had this stress. I hope the rhumy rings back and explains everything adequately. As the others have already told you, don't worry untill you have something to worry about!

Warm (((HUGS))) and wishes for good new only!

Stephanie
 
1 - 7 of 7 Posts
Top