Skip to main content

Hi everyone,  Long story short... I was on Remicade for 2.5 years and after 2 reactions (1 very serious), my doc took me off of it.  Because I had done so well and my labs were perfect for that period of time, we decided to try to keep me off of the biologics.  I had a scope on 3/3 that was perfect.  At one point, I was experiencing foot and lower back pain,so my GP sent me to a rheumatologist.  6 months ago, he did an extensive list of blood tests, all normal.  I went back for my six month check and one of my antibody counts was 1250 ( norm is <99) and the SCL70 was 125 (is was negative 6 months ago).  He discussed scleroderma with me and frankly scared the be-Jesus out of me for very good reasons.  But, he looked me over and said that I didn't have any physical manifestations for him to be concerned and said that he would see me in a year.  He also told me about a conference that he attended where the topic of an large number of false-positve SCL70 tests was a concern to local docs.  

Does anyone out there know anything about this?  Eventhough he told me to "go home and live my life", after 20 years of one thing after another, I am petrified.  

 

Thanks,

Lisa

Original Post

Replies sorted oldest to newest

I agree with Scott. Scleroderma is a rare disease that is very difficult to diagnose. Even if you have a positive test for the antibodies, you are not manifesting physical signs or symptoms. So, it is possible that sometime in the future you may develop scleroderma, but you also may never manifest the disease. You cannot diagnose it by one blood test.

http://www.sclero.org/medical/...-to-z.html#diagnosis

 

I also had chronic low back (sacroiliac) pain and foot pain (Achilles tendinitis) that ultimately sent me to a rheumatologist. All my antibody tests were negative, but I was still diagnosed with enteropathic arthritis with enthesitis (spondylitis in the same class as ankylosing spondylitis). The diagnosis was made based upon my presentation and medical history. Long story short, I was placed on biologics and my life has been better for it! That was 10 years ago and I think the treatment has helped prevent much progression of the disease.

 

So, I would embrace what your rheumatologist tells you, while still being alert to new symptoms. My point is that with your history, other things may be going on and don't let a red herring lead you in the wrong direction.

 

Jan

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×