10 Year Survival Numbers... The Real Numbers 1432 Patients

[americanmike]

Prognostic markers for systemic sclerosis. The risk of death is directly related to the autoantibody pattern. Other serum markers for organ involvement are under study, although their predictive performance remains to be evaluated. PubMed. Joint Bone Spine. 2006 Jun 2.

 

This article is from the sclero.org website: Antibodies in Scleroderma.

[barefut]

10 year survival rate 64%.

 

Not good enough.

[Clementine]

I would like to understand this article better. What antibodies would I specifically need to talk to my Dr. about if I have interstital lung disease? I also have sine systemic sclerosis. It's a bit confusing.

Jen

[americanmike]

Hi Barefoot--

 

Not good enough, True. But these numbers were from the past 10 years. So going forward will yield improvments for sure.

 

plus... it would not be unreasonable to see a cure in the next 10 years. Anyhow, I agree with your point. But at least this is better than many websites and doctors have said. And it gives reason to hope that someday within our reach they might cure it. I think that thought was a fantasy 10 years ago.

 

Hope you're doing well,

 

Michael in Florida

[jefa]

Hi, Jen

 

According to this article, it is the anti-topoisomerase I antibodies (Scl 70) that are associated with interstitial lung disease.

[Clementine]

Thanks Carrie...sometimes I am not clear headed and need help..LOL

I just tried to send an educated email to my rheumatologist asking him what my markers are. It does not matter anyway at this point, I am at a good place and think I can handle whatever is thrown my way.

 

I hope everyone's having a great day!!

Jennifer

[barefut]

Hi Mike,

 

So, when they say 10 year survival rate are they talking about 10 years from diagnosis or 10 years from onset of symptoms?

 

Barefut

[Clementine]

This is in a nutshell, what my Dr. has told me about my patterns...

 

Your scl-70 is negative. Interestingly, you are anti-Th/To antibody positive. I have done some research projects with this antibody test in patients with scleroderma and interstitial lung disease. When I have access to my laptop, I will forward you an article I wrote that is relevant to this antibody.

 

I feel so silly...this whole time I thought my slc-70 was positive. Can anyone elaborate on anti-TH/To antibody being positive?

 

I will do my own research but it's always good to hear from you all.

 

Thanks,

Jennifer

[Margaret]

Hi Jennifer ,

 

From a Pubmed article I have copied it says "Anti-TH/TO and PM-Scl, in contrast, are associated with limited skin involvement, but anti-TH/TO might be a marker for the development of pul. hypertension." "A positive anti-Scl-70 antibodies increases the risk for diffuse skin involvement and scleroderma lung disease."

 

Take care,

Margaret

[peanut]

Margaret,

 

Thanks for interpreting. My brain sometimes has a hard time getting the gist of medical articles. That would be me: positive anti-Scl-70 with skin involvement and interstitial lung disease (ILD).

 

peanut