Limited cutaneous systemic sclerosis and lung involvement question.

[-missymoo]

Hello to anyone reading. I just wanted to get a general feel for how many people diagnosed with Lcss actually have lung involvement? Trying to gage how rare or not as the case maybe to get lung problems.

Thank you in advance 😊

[Mylreaclairelee]

I don't not yet anyway. Keeping fingers crossed.

[Hidden]

This seemed like a statistic which would be known - a quick google and it appears to be 10% likelihood over a 10-20 year period:

err.ersjournals.com/content...

[LucyJean in reply to Hidden]

hello there, I followed this link and what the article is talking about is Pulmonary Arterial Hypertension, rather than just lung involvement. PAH tends to be associated with the limited form of scleroderma, but is not always caused by changes in the lungs. It can also be caused by changes in the right side of the heart. In fact the article in question talks about lots of 'groups' of patients, each group having a different cause for their PAH.

Lung involvement can take many forms and each person tends to have a unique pattern, so it can be tricky to predict and compare people. Lung fibrosis is more common in the diffuse form of scleroderma.

All my best

Lucy xxx

[Hidden in reply to LucyJean]

35%?

err.ersjournals.com/content...

[LucyJean in reply to Hidden]

Interesting all the different takes, that different articles will have on stats. This article is talking about interstitial lung disease which is one type of lung involvement that you might get. Looks like if you have diffuse scleroderma you have a 53% chance of having it and 35% in limited. Would be interesting to know if the stats have changed since it was written in 2015 (probably from studies done in 2013/14.

Lxxx

[-missymoo in reply to LucyJean]

Thank you Lucyjean, I have so much to learn. 😊

[Hidden in reply to LucyJean]

There is the comment in that link that it is lower incidence where diagnosis is made early (and presumably therefore affected by receiving treatment earlier in the presentation) - I’d have liked to have seen the prevalence % across diagnosis timings

[Hidden in reply to LucyJean]

My understanding is that the changes in the right hand side of the heart are due to it having to work over time trying to pump blood round lungs that are scarred and therefore not able to fully function Mine are scarred by emphysema, pulmonary fibrosis, systemic scleraderma and bronctasies no idea which came first probably the fibrosis.

[SherrySanford65]

I believe that 12 percent of people with systemic scleroderma on an average are diagnosed with pulmonary hypertension.

[Hidden in reply to SherrySanford65]

Waiting for appointments to be tested for Pulmonary Hypertension.

[Hidden in reply to Hidden]

Haven't got it yay, don't like to be greedy, 4 conditions is enough wouldn't you say.

[treesie]

I developed lung involvement 30 years after being diagnosed with crest. I have fibrosis in my lungs and interstitial lung disease. I have to have oxygen at night and I get short of breath very easily. Walking and even dressing myself makes me huff and puff. Still have acid reflux, muscle pain and GI problems too. Had to stop work at 59 years old. I am 60 now.

[Nurmohammed in reply to treesie]

Hi I have same problems since last long years I went so many times in hospital for cheek my lung with oesophagus but no more help from gp or royal London I’m suffering with scleroderma sclerosis with Raynaud's also kidney disease which damage my kidneys I was on dialysis 7 years kidney hospital doctors didn’t put me on list to get donations list because I have scleroderma sclerosis...!!! So my sister gives me donned her kidney it’s long story which I pasted and I’m still going on my way to carrying my self by the way I’m 49 years old I can not live with any gp or hospital which they can’t help on my medical condition...? Sorry to saying this but what I feel I shears with you I hope you don’t mind thanks for your topic which I shears my story.

[treesie in reply to Nurmohammed]

Sorry to hear your that Medical Professionals would deny you a kidney transplant because of systemic sclerosis !! I would go to a new and better Doctor that understands your medical problems,

[Hidden in reply to treesie]

I have just bought myself a wedge pillow and the reflux has eased considerably, diet has also helped, the coughing at night has also nearly stopped since I have been using the pillow, still take a small dose of a cough medicine before sleep plus a very very light sniff of Vicks inhaler !!

[Hidden]

I have Systemic Sclerosis, plus CPFE, plus Bronchectasies (don't know how that is written in English as I live in France) Think all my conditions are caused by being poisoned by Zinc Chloride fumes when at work decades ago.

[Patishna]

Though so many in this forum are challenged, I am SO glad for the camaraderie. I am not the one affected by SSCL (systemic scleroderma); it's my daughter who has had Reynaud's symptoms for over a decade and was diagnosed with SSCL about 2 years ago. Her lung involvement was what pushed her to see a specialist.... that and the fact that my then 69-yr old husband had recently been diagnosed with Lupus (!). My daughter has an approximate 40% loss of lung usage, diagnosed as interstitial lung disease. What I find encouraging in this group is the sharing of information, as SSCL is one of the least funded of the autoimmune diseases (at least here in the U.S.) I pass along to my daughter good recommendations like …. the wedge pillow. She has also been put on a mild post-nasal drip medication which has helped her coughing. …… Though not "scientific" by nature, I also like reglos's comment about the zinc chloride poisoning as a possible cause. Hey, if the scientific community isn't doing research, WE NEED TO! My daughter was heavy into Mui Thai kickboxing just prior to her SSCL diagnosis. Blessings to all of you as heroically live each day with this stuff.

[SherrySanford65]

I was told by my doctor that 12 percent of people with systemic scleroderma will have lung involvement. I have pulmonary hypertension and was diagnosed 5 years ago. I was diagnosed with CREST syndrome in the 80’s.