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Rheumatoid Arthritis with ILD

Rheumatoid arthritis (RA) is a systemic autoimmune disease. Besides the joints, it can also affect other parts of the body, including lungs1

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What is rheumatoid arthritis with interstitial lung disease (RA-ILD)?

The inflammation caused by RA can affect many parts of the body, including the lungs, skin, eyes, digestive system, heart and blood vessels. ILD refers to a group of disorders that cause inflammation and scarring of the lung tissue.2 Scarring of the lung tissue occurs when an overactive immune system response is triggered by a variety of factors (environmental and genetic), eventually leading to damage within the lungs.3 This scar tissue in the lungs is known as pulmonary fibrosis and affects the tiny air sacs and blood vessels responsible for providing oxygen to all parts of the body. As healthy lung tissue is replaced by scar tissue, it becomes harder for oxygen to pass through the lungs and into the bloodstream. This results in a progressive reduction in lung function and the appearance of symptoms like dry cough and shortness of breath.4

How can we support you?

On this page you can find information that may help if you:

I have RA ... could I have ILD or develop it in the future?

If you have RA, you may be wondering if you could go on to develop interstitial lung disease (ILD). Approximately 10% of people with RA develop ILD and an additional 30% of people might have subclinical ILD,5 which means the ILD does not show noticeable symptoms.

Research shows that a person is more likely to develop ILD if they have RA and:6

  • Were diagnosed with RA at an older age

  • Smoke or have smoked in the past

  • Are male

  • Have certain antibodies found in their blood

Cigarette smoking is the only risk factor you can change but if you are worried about your own risk, speak to your doctor.

You may also find our page ‘What is pulmonary fibrosis’ useful.

When to talk to your doctor

Most cases of ILD occur within the first five years of the diagnosis of rheumatoid arthritis.7 As ILD with pulmonary fibrosis can be progressive, recognising it early is key to getting the support you need. If you have RA with one or more of the above risk factors, speak with your doctor. Depending on the risk, your doctor might decide to check your lungs using HRCT (high-resolution computed tomography; an imaging method to look at your lung tissue) and/or Pulmonary Function Test (spirometry).

If you have RA, and have a cough or difficulty breathing, it’s important to talk with your doctor. Respiratory symptoms in RA can be due to a variety of conditions that affect your lungs.

To read more about the tests involved in diagnosing ILD, visit ‘Diagnosing pulmonary fibrosis’, which explains the tests.

La mayoría de las personas no advierten los cambios en los pulmones al principio, dado que es posible que ya se hayan estado sintiendo fatigadas y sin aire debido a la artritis reumatoide subyacente. Sin embargo, estos también pueden ser síntomas de la EPI y, por ende, es importante conocer bien su cuerpo para así notar los cambios.

Cuanto antes se detecta la afectación pulmonar, antes podrá someterse a pruebas y obtener apoyo, dado que el médico puede decidir la mejor manera de continuar con el tratamiento de acuerdo a su situación.

Los síntomas de la AR-EPI pueden incluir los siguientes:2

  • Falta de aire.

  • Sensación de mayor falta de aire que lo habitual al subir escaleras.

  • Dificultad para respirar profundamente.

  • Tos seca con empeoramiento.

  • Sensación de mayor cansancio que el habitual durante el transcurso de un día normal.

Hay una variedad de síntomas que puede presentar con la AR-EPI y algunos de estos empeorarán con la evolución de su enfermedad. Tenga en cuenta que hay cambios en el estilo de vida y diferentes tratamientos que pueden ayudarle a controlarlos. Los síntomas también pueden variar de una persona a otra, por lo que sus síntomas podrían no ser los mismos que los de otra persona con fibrosis pulmonar.

key fact quick tip

QUICK TIP

Keep a diary of your symptoms to track how you feel over time. Also, make a note of any questions and be sure to share your symptoms with your doctor

Taking action on your concerns and symptoms

If any of your symptoms are a concern, or you want to better understand them, speak to your doctor. You can assist your doctor by providing information such as:

  • How often and for how long you have been experiencing symptoms

  • Whether they feel mild or severe

Providing this sort of information about your symptoms can be a useful conversation starter with your doctor and could help decide the next steps. Other concerns you might have that would be good to clarify with your doctor could be:

  • Could I be at risk of having ILD?

  • What tests could I have to find out if I have ILD?

  • I’m concerned I might have ILD, should we look into this?

  • What can we do to keep an eye on my lung health?

Al diagnosticar la AR-EPI, su equipo de tratamiento evaluará muchas áreas de su salud. Por ejemplo, le preguntarán sobre sus antecedentes laborales, antecedentes médicos familiares, algún posible uso de fármacos y medicamentos, y si alguna vez ha fumado.

También se le hará un examen físico para que el médico comprenda mejor su salud pulmonar. No obstante, es posible que se necesiten otras pruebas para obtener un diagnóstico claro.2

 

Resources for you

Download a symptom tracker to monitor how you feel over time

Additional resources

For more information about RA, be sure to speak with your doctor

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I have ILD ... could I also develop RA?

Respiratory symptoms can appear before development of the joint symptoms of RA in 10–20% of cases,7 with 14% of people with RA-ILD being diagnosed with ILD one to five years before their RA diagnosis.10 However, RA is usually diagnosed before the detection of ILD.11

Symptoms of RA

The main symptoms of RA are:

  • Pain in the joints

  • Swelling and/or stiffness in the joints, although the small joints in your hands and feet are often the first to be affected.12

Some people can experience more general symptoms too, such as:12

  • Tiredness

  • High temperature

  • Poor appetite

  • Weight loss

If you are concerned that you may have, or be at risk for RA, ask your doctor:

  • What is my risk for developing RA?

  • Could my symptoms be related to RA?

  • What can we do to monitor or test for RA?

Search for your local RA patient organisation or patient support group to learn more about RA.

Keep in mind that ILD can be progressive, it’s important that your doctor checks your lung health regularly so that any changes can be managed quickly.

You may also find our page ‘What is pulmonary fibrosis’ useful.

I have RA-ILD, what does that mean?

RA-ILD can become progressive, which means over time, symptoms and how well your lungs work might get worse, or the HRCT scan shows that pulmonary fibrosis in the lungs has increased. Currently, there is no way of predicting if, or how fast this will happen. Some patients might not have changes in their symptoms, while other patients might experience a faster worsening of their symptoms.19

Respiratory symptoms are mostly non-specific and not all symptoms you experience will be due to ILD.13 It may be difficult to tell whether the symptoms you experience, such as fatigue, are due to ILD or RA.14

New respiratory symptoms or worsening of existing respiratory symptoms (e.g., dry cough, shortness of breath and fatigue) may be a sign that your ILD is progressing.10,15,16,17

If you notice that your physical activity is becoming increasingly difficult owing to your increasing breathlessness, or if you struggle to sleep due to coughing at night,18 talk with your doctor.

These are signs that can mean the ILD has progressed but your doctor, supported by a wider team of specialists, will work closely with you to monitor this.16 Ask your doctor about your treatment options, including pulmonary rehabilitation, which could help you manage your condition.

It’s important to work with your doctor to help prevent or slow down the progression of RA-ILD. The key things you can do to help manage your condition is to monitor your health and symptoms and keep in contact with your doctor and healthcare team so that you get the appropriate support. Changes in your symptoms can appear gradually so using a diary may help you spot any changes.16,20

Make sure you feel comfortable with the level of support:

  • Are your symptoms managed effectively?

  • Is there anything you are confused about, that you would like more information on?

  • Have you agreed on a treatment or management plan? Do you know how to follow it?

  • Are you getting regular check-ins with your healthcare team?

key fact important

IMPORTANT

Talk to your doctor about treatment options for RA-ILD. They will be best able to provide guidance and support tailored to your individual situation and suggest the best way moving forward

Learn more
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Your wellbeing

Carers have a demanding role, but support and resources are available to help you

Some days may be tougher than others. Regardless of how you’re feeling we can point you in the direction of help.

“Join a support group, if somebody puts out a hand to help, somebody will always hold it”

Key takeaways

Bullet Point

RA is an autoimmune disease. ILD can occur in patients with RA, which means that the lungs might become scarred resulting in problems with the way lungs function / decline in lung function

Bullet Point

When looking for the correct diagnosis, your doctor may perform several tests to get a good understanding of your lung health

Bullet Point

RA-ILD might become progressive and so your doctor, supported by a wider team of specialists, will work with you to monitor changes in your lung function and your symptoms

  1. Olson A, Gifford A, Inase N, et al. The epidemiology of idiopathic pulmonary fibrosis and interstitial lung diseases at risk of a progressive-fibrosing phenotype. Eur
    Respir Rev. 2018;27(50):180077.

     

  2. British Lung Foundation. Pulmonary Fibrosis. Available at: https://www.blf.org.uk/support-for-you/pulmonary-fibrosis. [Accessed June 2023].

     

  3. Shaw M, Collins B, Ho L, Raghu G. Rheumatoid arthritis-associated lung disease. Eur Respir Rev. 2015;24(135):1–16.

  4. Zamora-Legoff JA, Krause ML, Crowson CS, et al. Progressive Decline of Lung Function in Rheumatoid Arthritis-Associated Interstitial Lung Disease. Arthritis Rheumatol. 2017;69(3):542–549.

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Co-existing conditions

You may have other ongoing health conditions, but these can be managed alongside your condition with pulmonary fibrosis.

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