What should I do if I have an interstitial lung disease?
If you live with an interstitial lung disease (ILD), such as idiopathic pulmonary fibrosis, other types of pulmonary fibrosis, or pulmonary sarcoidosis, you are at higher risk of severe complications if you get COVID-19.
As someone who is at significantly higher risk from COVID-19, it’s important you follow the shielding advice and continue to manage your condition well. At present, you are strongly advised to shield until the end of June.
Most people with an interstitial lung disease should have got a shielding letter advising them to follow shielding advice. Across England, Scotland, Wales and Northern Ireland the criteria for shielding are slightly different. Please contact your doctor or hospital clinician if you think you may need to shield but haven’t got a letter.
It may be that your level of risk, and the need for you to shield, may change as a result of advice from your specialist team, your GP practice or changes in advice from the 4 governments across the UK.
If you think you have coronavirus symptoms
If you have coronavirus symptoms, such as a fever or a new continuous cough or a loss or changed sense of normal smell or taste or breathlessness, contact the NHS 111 online coronavirus service, or call NHS 111 if you can’t access the internet. Do this as soon as you have these symptoms. In an emergency, call 999 if you feel very unwell, have a high temperature or are struggling with your breathing.
If you are looked after by a hospital specialist team, talk to them about how to manage your symptoms and treatment.
It is better to be cautious and talk to your team if you have any change in your symptoms. The symptoms of ILDs can be similar to the symptoms of COVID. Or you may be taking drugs that mean you won’t have the main symptoms of coronavirus. For example, if you are take corticosteroids, you may not develop a fever.
Make a list
It’s a good idea to keep a list of the medicines you take and of the conditions you live with, as well as a recent letter from your clinic, to give to health care professionals if you need treatment for COVID-19.
Contacting your specialist team or other health care professionals
To minimise the amount of face-to-face contact, it’s likely your specialist team and GP practice has changed the way they work and how they consult you. You might get texts or emails from them, get electronic prescriptions and be offered telephone or video calls. You might be offered new ways to get your prescriptions delivered, such as by post, delivered by a pharmacy or NHS Volunteer Responders.
Find out more about how technology can help you manage your health care in our guide.
Will you need to go to hospital or attend face-to-face appointments or tests?
If you have been advised to shield, your health care team will discuss your continuing care with you, and whether the benefit of you attending a service outweighs the risks to you. Your health care team will only advise you to go a hospital or to have a test away from your home if it’s vital for your care.
The hospital or testing facilities are likely to be set out differently for the safety of the people who work there and people attending. Health care professionals will take special precautions, including checking if you have any COVID symptoms when you arrive and wearing personal protective equipment (PPE) in line with current advice for clinicians.
If you agree to attend, follow social distancing advice from your government and:
- come to the appointment on your own if you can. If you can’t, only one other person, preferably from your household, should come with you
- wear a face covering unless that makes your breathing uncomfortable
- avoid using public transport
- If it’s suspected you may have pulmonary fibrosis or sarcoidosis
- If you already have a diagnosis of pulmonary fibrosis or sarcoidosis
- If your treatment includes immunosuppressant drugs
- If your treatment includes anti-fibrotic drugs
- Oxygen assessments
- Pulmonary rehabilitation
- Lung transplant referrals
- Getting help if you feel anxious or depressed
- What you can do
- Best supportive care
It can be difficult to diagnose pulmonary fibrosis or sarcoidosis, and it’s usually done by a multidisciplinary team (MDT). In current circumstances, you can expect to be first contacted by a member of that team, usually a specialist nurse, by telephone, or have a video consultation. If that’s not possible, you may be offered a face-to-face appointment if the benefits outweigh the risks.
If your team think it’s absolutely necessary to make a firm diagnosis and provide urgent care, they may talk to you about the benefits and risks of having:
- breathing and lung function tests to measure how well your lungs are working if you have not had these tests within the last 6 months.
- blood tests
- a CT scan of your lungs
If you take anti-fibrotic drugs or immunosuppressant drugs, you may be offered blood tests at home, for example by district nurses or a community respiratory team, or by a community blood monitoring services so you don’t have to go to hospital. Your team will consider if these tests can be done less often.
Your health care professional will prescribe sufficient medication to meet your needs without disrupting supplies for others who need these drugs too during these times. If you haven’t done so already, register with your GP practice for online services including prescriptions.
Your specialist will discuss with you the risks and benefits of taking medications called immunosuppressants that help control your body’s immune system. This is because you need careful monitoring, usually with blood tests done in hospital, while you are taking them and they may increase your risk of infection. Your team will look to continue your current treatment unless blood tests show a need to change it.
If you are prescribed immunosuppressants, you should take them as prescribed to avoid your symptoms getting worse.
If it’s not possible to monitor your blood or you have a new diagnosis, your specialist may suggest you take another medication, a steroid called prednisolone, on its own. They will discuss the options with you, and explain possible side effects of this treatment, usually by a phone or video call that is confidential.
If your multidisciplinary team has diagnosed you with IPF, you may be offered medication to slow the rate of lung scarring, called anti-fibrotic drugs, provided your lung function is within the set range and your blood monitoring can be carried out safely. The 2 drugs that can be prescribed are pirfenidone and nintedanib.
You should continue to take your antifibrotic drug as prescribed. There is no evidence that taking them increases your risk of getting COVID-19 or of getting a more serious illness if you have coronavirus.
Your team will discuss with you having an assessment for new oxygen therapy, including ambulatory and long-term oxygen therapy, if your specialist thinks you need oxygen to improve the oxygen levels in your blood. If possible, this assessment will be carried out in your home.
If you already use oxygen, your team will discuss the timing of your next review and assessment, which will be carried out at home if possible.
Continue with your usual exercise, including pulmonary rehabilitation (PR) exercises. Although PR courses are not currently running, lots of instructors are finding ways to continue to support people in their exercise classes. There are also online resources to help you. You can watch our exercise videos or download our exercise handbook to exercise safely at home. Or you could use this pulmonary rehabilitation pack that includes exercise and education.
Your specialist can continue to refer you to a transplant unit for an assessment of whether a lung transplant is an option for you.
Talk to your health care professional on the phone or by video if you’re feeling anxious or depressed. You can also take a look at our advice on dealing with your mental wellbeing if you have a lung condition and the Mental Health Foundation’s advice about coping at this time.
- Manage your breathlessness with your usual breathing techniques and positions.
- Eat a healthy balanced diet and maintain a healthy weight. Have a look at our information about eating well with a lung condition.
- If you smoke, try to stop smoking. Now is the time to quit to help you keep healthy and stay out of hospital. There is lots of support available, ask your specialist team or your GP or have a look at this Quit for COVID website.
- Keep handwashing and cleaning your equipment. It remains essential to wash your hands often with soap and warm water for at least 20 seconds. You should also clean things like face masks, cannulas and nebulisers regularly with washing-up liquid and following the manufacturer’s instructions. Do not share any equipment with anyone else.
Your team can continue to ask local specialist palliative care teams to support you and provide best supportive care for your symptoms.
If you feel you can, you might want to discuss with those closest to you, and your health care professional, any wishes you have for your future care. This is called advance care planning. Things that are important to you are more likely to happen if you can share your wishes in advance.
- Read why Dr Noel Baxter, a GP, suggests you should think about talking to your family in the current situation
What you can read next:
- What is coronavirus?
- What if I have symptoms of coronavirus?
- How can I cope with staying at home?
- What should people with a lung condition do now?
- What should I do if I have COPD?
- What is social shielding?
- What’s the difference between self-isolation, social distancing and social shielding?
Last updated: Friday 29 May 2020
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