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Jeannie McClelland

Pulmonary survival study in 91 patients with systemic sclerosis (SSc)

6 posts in this topic

Pulmonary survival study in 91 patients with systemic sclerosis (SSc). In SSc major determinant of morbidity and mortality is pulmonary complication including pulmonary interstitial lung disease and pulmonary arterial hypertension. Patients were classified as limited or diffuse subtype. In the present study, clinical manifestations of two subtypes of disease were divergent at first; however they became convergent in late stages, and this was the same as results in previous studies. Hadi Poormoghim. Rheumatology International. 23 May 2010. (Also see: Pulmonary Involvement Prognosis)

 

This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Did anybody who has read this summary understand this:

"ILD had developed after a median of 107 (SE = 24.4) months after the first symptom of SSc...... Alveolitis and fibrosis had developed after a median of 129.0 (22.9) and 259.0 (74.2) months, respectively."

Taking in consideration that median value is the midpoint, found by arranging the values in order and then selecting the one in the middle I was wondering whether it is possible that the midpoint of developing ILD can be 107 months (almost 9 years) after the first symptoms.

Thinking about the methodology of the research I presume that they have put together limited and diffuse systemic sclerosis and then determined the median. It is a pity that we cannot see the whole article!

 

This is very confusing for me. I thought that these pulmonary involvements occur early in the course of the illness. I was expecting them every day. It would be very disappointing to wait 8 or more years from the first symptoms and then get it. Maybe in the diffuse type it comes earlier. :unsure:

Best regards

Erika

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Erika,

You interpreted the article right in the sense that half of the SSc patients in this study developed lung involvement (ILD specifically) during the first 9 years and the other half after 9 years. Apparently this isn't the first study that has indicated this. One of the studies in the ISN pulmonary fibrosis section states

 

"Lung involvement had developed on an average of 113 +/- 106 months after the first manifestation of the disease and was apparent within the first year in 10 patients (16.7%), between 1 and 2 years in 3 patients (5%), between 2 and 3 years in 2 patients (3.3%), between 3 and 4 years in 5 patients (8.3%), between 4 and 10 years in 21 patients (35%), and after 10 years in 19 patients (31.7%). When the symptoms of lung involvement appeared, 37 patients (61.7%) were not receiving treatment while 23 (38.3%) were using an immunosuppressive agent." The natural course of progressive systemic sclerosis patients with interstitial lung involvement. (Pubmed)

 

I love the tolerance of 106 months! That indicates a tremendous variability in the development of lung involvement. Just another case that demonstrates how unpredictable this disease is and how it affects everyone differently. It's no wonder why doctors have such a hard time diagnosing and treating it. There's no standard.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hallo Janey

 

Your article says also:"The first sign of the disease, the probability of interstitial pulmonary involvement, is highest during the first 15 years after. Although this probability decreases after 15 years, in up to 10% of the patients, interstitial pulmonary involvement can still occur even up to 40 years."

I would not panic if I get Pulmonary involvement after 40 years of disease. I will be than 90 years old and then I can further live with IPD. :happy1-by-lisa-volz:

All best

Erika

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Hi Erika,

 

I did the same sort of math that you did in your last post. I was 59 when diagnosed and when I added on possible life expectancies with scleroderma, I figured my most likely cause of death was going to be old age! Love it! That works for me.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I have diffuse sclero. One of the first things I noticed when I started feeling ill was when I ran my lungs would hurt, not my legs, which I thought was odd. I have had ILD for 6 years and PH since Jan. 2010. I plan on living much longer than the two to three years prognosis. Fortunately, my lungs have been stable for the past few years, the PH is new. Since my transplant I am breathing better, don't know why it would affect my lungs but I'm not complaining!

 

miocean


ISN Artist

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