Living with lung problems
It's important to look after your lungs because many people with scleroderma develop lung problems.1 Your doctor can help you find ways to lessen the impact on your life, but there are also things you can do. Learn more here.
2 min read
Many people with scleroderma will have lung problems, but in most cases, their condition remains relatively stable, or declines only gradually over many years.2
How to reduce the impact of lung problems so that you can still do the things that are important to you
Ensure your lungs are frequently monitored—don’t miss check-ups and report any new symptoms. If you have ILD, monitoring with lung function tests and eventually chest HRCT is important. These tests can help doctors evaluate if progression or worsening of lung problems has occurred.3
Smoking is not good for your lungs—ask your doctor for help to stop smoking. They can do a lot to support you.
Manage any symptoms of gastro-oesophageal reflux disease (GORD)—your doctor/nurse will be able to help you do this.
Try to stay active—simple light exercise will help. Always check with your doctor first, and consider making a list of any questions you might have.
Stay positive—most lung symptoms can be managed. Consider alternative ways to keep doing the things you love. Talk to your doctor about how your lung symptoms affect you and they can give you advice.
Talk to friends and family (and even colleagues) right from the start—they could be able to find ways to help you do what you need or want to do.
Uncomfortable breathing cold air
With scleroderma, Annelise doesn't want to irritate her lungs in cold weather. Watch how she protects herself when she leaves the house.
QUICK TIP
Help prevent infections that could make your lung problems worse by washing your hands regularly and speaking to your doctor about vaccinations.4
As yet, no drugs can cure the lung problems scleroderma can cause,5 but scientists are investigating different options. For now, your doctors might suggest some medication to help.
You may also like to read:
Managing symptoms
Treatment
Patient organisations and support groups
-
Solomon JJ et al. Scleroderma lung disease. Eur Respir Rev. 2013; 22(127): 6–19.
-
Scleroderma & Raynaud’s UK. Organs. Available: https://www.sruk.co.uk/scleroderma/scleroderma-and-your-body/organs/ [Accessed December 2021].
-
Hoffmann-Vold AM, et al. The identification and management of interstitial lung disease in systemic sclerosis: evidence-based European consensus statements. Lancet Rheumatol. 2020;2(2);71–83.
-
Scleroderma News. 5 Tips to Help Prevent Lung Infections. https://sclerodermanews.com/social-clips/5-tips-help-prevent-lung-infections/ [Accessed June 2023].
-
Iudici M et al. Where are we going in the management of interstitial lung disease in patients with systemic sclerosis? Autoimmunity Reviews 2015;14:575–578.
"It was only when I needed oxygen that I realised how scleroderma was affecting me. I gave up work, but I have a dear friend who retired shortly after me. Having the time to do things we want to do has been fantastic."
– Susan