Interstitial lung disease
(ILD)
Lung fibrosis (also known as interstitial lung disease) is one of the two key ways in which scleroderma may affect your lungs.1 Learn what it is and what to look out for.
3 min read
ILD happens because fibrosis (scarring) affects the little air sacs in the lungs (the alveoli). This scarring means the lungs become stiff. This can stop the lungs working as well as they should.1 The alveoli are essential for getting the oxygen you inhale into the blood and removing carbon dioxide so that it can be exhaled.
Symptoms of lung fibrosis may include:1,2
- Getting out of breath doing simple tasks like climbing stairs.
- Feeling very tired when going about your normal day.
- Dry cough that you can’t get rid of.
- Difficulty taking deep breaths.
- Feeling dizzy.
For most people with scleroderma lung problems, their condition remains relatively stable, or gradually declines over many years.1
Over time, 1 in 4 people with scleroderma might develop noticeable lung symptoms that affect daily activities. In very severe cases, these symptoms can affect how long they live, but this does not happen to most people.3,4
The earlier ILD is caught, the more likely it is that you will have a better response to treatment.1
Speak to your doctor about early testing
Make sure you tell your doctor if you get any of the symptoms above. During or following initial scleroderma diagnosis, tests such as a HRCT scan may be performed to evaluate your lungs.3
The facts:
of people with limited cutaneous scleroderma will develop lung fibrosis.5
of people with diffuse cutaneous scleroderma develop lung fibrosis.5
people with severe scleroderma might develop serious lung symptoms that affect how they go about their life.3,4
You may also like to read:
Monitoring scleroderma
Treatment
Patient organisations and support groups
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Scleroderma & Raynaud’s UK.Organs Available: https://www.sruk.co.uk/scleroderma/scleroderma-and-your-body/organs/ [Accessed December 2021].
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University of Michigan. Scleroderma Program: Lung Involvement. Available: https://medicine.umich.edu/dept/intmed/divisions/rheumatology/research/scleroderma-program/patients/lung.htm [Accessed December 2021].
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Solomon JJ et al. Scleroderma lung disease. Eur Respir Rev. 2013;22(127): 6–19.
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McNearney TA, Reveille JD, Fischbach M, et al. Pulmonary involvement in systemic sclerosis: associations with genetic, serologic, sociodemographic, and behavioral factors. Arthritis Rheum. 2007;57: 318–326.
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Walker U, Tyndall A, Czirjak L et al. Clinical risk assessment of organ manifestations in systemic sclerosis: a report from the EULAR Scleroderma Trials And Research group database. Ann Rheum Dis. 2007;66: 754–763.
"They discovered I had quite severe fibrosis of my lungs. I was referred to a specialist hospital and things have improved with treatment, which is good."
– Mandy