Living with Pulmonary Fibrosis

Reading time: 5 min

The anti-fibrosis drugs used in the treatment of interstitial lung diseases may have adverse side effects that are usually of mild to moderate intensity.  

Their appearance is higher during the first six months of treatment and decrease significantly from then on.  

Appropriate health education, as well as the following of protective measures by the patients, is very important, especially during the first treatment period. 

The most common side effects are: 

Person vomiting in a toilet

Nausea, dyspepsia, vomiting, and lack of appetite. In these cases, it is recommended:  

  • To take the drug during meals. It is preferable to eat small amounts of food more often throughout the day instead of a few large meals. 

  • To avoid foods that are fried, rich in fats, or spicy. 

  • To avoid fizzy drinks. 

  • If there is nausea or a change in gastrointestinal rhythm, prokinetic drugs (that improve gastric emptying and increase intestinal transit) can be administered, as well as a gastric protector and antidiarrhoeals to minimise the symptoms.  

  • If the adverse effects are more common at a specific time of the day (morning, afternoon, or night), the doses can be reduced. If this measure is ineffective, the health professionals will assess the withdrawal of the drug for 10-15 days in order to prescribe it again after the symptoms have improved.  

Woman with sunglasses and hat

Rash, photosensitivity. In these cases, it is recommended: 

  • To avoid exposure to the sun in hours of maximum intensity (midday or first hours of the afternoon). 

  • To use hats, sunglasses, long trousers and long-sleeve T-shirts. 

  • To use sun protector with a protection factor greater than 50 against UV-A and UV-B rays.  

In cases where a skin rash persists for more than seven days, the drug can be withdrawn for 15 days and re-introduced after the rash is gradually resolved. If the skin rash has urticaria characteristics or is present in areas of the body not exposed to sunlight, it must be considered it has an allergic origin. In this case, the drug should be withdrawn permanently and an additional treatment with antihistamines and oral prednisone prescribed. 


Liver. Before starting the pharmacological treatment, blood tests with a liver profile are performed and the liver transaminase levels (ALT, AST) are monitored monthly for the first six months. An increase of more than three times the maximum limit of the transaminases indicates the need to adjust the dose of the drug and even its withdrawal if the abnormal levels are maintained.  

Healthy life habits

Factory and tobacco crossed out to avoid polluted environment

Toxic habits. The exposure to tobacco smoke, as well as other lung toxins (from heavy metals, from wood dust, or from occupational activities with livestock and agriculture), are related to the development of pulmonary fibrosis. There are currently several effective methods available for quitting the tobacco habit, as well a support groups, that are achieving high success rates. In the cases of work activity related to exposure to toxins, protection measures are advised (face masks, isolation methods), as well as adapting the work environment or changing the activity for other tasks without exposure. 

Food pyramid

Diet. To follow a healthy and balanced diet helps to maintain a suitable weight. The patients must follow a varied diet that includes carbohydrates, fruit and vegetables, as well as protein of animal origin, and dairy products. The consumption of saturated fats, oils, salt and sugar, should be avoided or limited. It is also advisable to eat meals in small amounts distributed throughout the day instead of eating less and much larger meals. The shortness of breath in these patients may be aggravated with the abdominal distension and the secondary displacement of the diaphragm. If symptoms of gastro-oesophageal reflux appear, which is common in patients with interstitial lung diseases, antacids may be added to the pharmacological treatment, as well as recommending postural measures.  

Man running; regular physical exercise

Exercise. It is advisable for all patients with chronic respiratory disease to perform regular aerobic exercise adapted to the situation of each patient. It will allow them to keep in physical shape, as well as to increase their personal well-being, to reduce the feeling of baseline dyspnoea, and to improve tolerance to effort. The patients may also take part in respiratory physiotherapy groups within specialist centres with lung rehabilitation programs designed for teaching breathing techniques to help control the symptoms of the disease, as well as to promote social interaction between the patients.  

Person sleeping in bed

Rest. Patients with respiratory disease can present desaturation during the night due to the physiological relaxation of respiratory musculature during sleep, as well as elevation of the diaphragm when lying down on the back. If there is desaturation, it may be advisable for oxygen therapy to be prescribed in order to ensure correct oxygen supply to the body during the night.  

Healthy rest contributes to decrease daytime drowsiness, increase the capacity to maintain attention and correct productivity, improve mood, as well as regulate physiological parameters like blood pressure and heart rate, among others. 

Symbol of man and woman

Sexuality. Like all physical activity, the practice of sex relations may be limited due to the symptoms of the respiratory disease itself, like exertional dyspnoea and chronic cough. It is advisable to take contraceptive measures in patients taking anti-fibrosis drugs (pirfenidone, nintedanib), since animal studies have shown possible embryonic toxicity (may cause miscarriage, defects at birth or problems of development).  

Travelling by plane

Travel. When travelling in an airplane, it should be taken into account that the amount of oxygen in the environment decreases at a higher altitude. Patients with chronic respiratory disease may note greater difficulty in breathing during a high altitude flight, particularly in long-distance journeys. This could give rise to symptoms like general discomfort, dizziness, dyspnoea at rest, and a feeling of tightness of the chest. For this reason, it is advisable to consult the medical team beforehand in order to determine the need for supplementary oxygen therapy during the journey.  

Emotional support between two women

Social and emotional support. The disease has a significant impact on social and emotional aspects of the patients and their families. Psychological and emotional support services from hospital centres are recommended. It is also advisable to participate in pulmonary fibrosis family and patient associations, where common experiences may be shared between patients and offer mutual support in difficult situations. Various sessions and informative activities can be organised from these associations that could contribute to create social links and improve the emotional situation of the patients. 

Substantiated information by:

Fernanda Hernandez Gonzalez
Jacobo Sellarés Torres
Joel Francesqui
Sandra Cuerpo Cardeñosa
Xavier Alsina Restoy

Published: 9 June 2020
Updated: 9 June 2020

The donations that can be done through this webpage are exclusively for the benefit of Hospital Clínic of Barcelona through Fundació Clínic per a la Recerca Biomèdica and not for BBVA Foundation, entity that collaborates with the project of PortalClínic.


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