Many patients with sarcoidosis do not need treatment. When treatment is considered, steroids are the first choice, unless there are contraindications to their use.
In sarcoidosis there are two main reasons to treat, which have very different implications:
- To prevent organ damage or dangerous disease and
- To improve quality of life.
Preventing organ damage
The first indication for treatment in sarcoid is to prevent or, if this is not possible, then to limit, irreversible damage. Sarcoid inflammation can damage the lungs or other organs, and may cause permanent damage through scarring. When steroids are used to prevent irreversible damage, a higher dose of steroids is initially used and this is then gradually reduced down to a low ‘maintenance’ dose. This low dose is usually maintained for at least one year before attempts are made to gradually stop treatment. Lung function tests are very useful in assessing response to treatment and in ensuring that lung function does not deteriorate as the steroids are gradually reduced and/or stopped completely.
In the rare cases of life-threatening or dangerous disease (heart, brain, eyes, severe lung scarring), it may be necessary for your physician to consider treatment with very high doses of steroids, usually given by drip treatment. Such high doses given intravenously are better at rapidly switching off the inflammation whilst tending to cause fewer side effects than high doses of steroid tablets.
Improving symptoms affecting quality of life
A completely different scenario unfolds when treatment is considered to control symptoms which significantly affect quality of life, including tiredness, fatigue, joint/muscle pains and skin lesions. Although the symptoms can be very distressing and frustrating, they do not reflect in the slightest the degree of internal organ involvement. In this case, when organ damage is not an issue, the question of whether to start steroid treatment is very much an individual choice, and should be based on your own preferences regarding the potential benefits of treatment balanced against the potential for developing side effects from treatment.
In this scenario, low doses of steroid are usually sufficient to meet the needs of improving quality of life without causing undue long-term side effects. However, you may prefer to wait a while or avoid starting steroids altogether. When treatment decisions are dictated by symptoms affecting quality of life rather than organ damage, the decisions of whether to start, reduce and/or stop treatment if it proves ineffective in controlling symptoms, will be essentially driven by your own preferences and inclinations.
The use of non-steroid drugs (‘steroid-sparing agents’)
In addition to steroids, there are other drugs that can be used in the treatment of sarcoidosis. These drugs mostly belong to the type of drugs called immunosuppressants. The most commonly used are azathioprine and methotrexate. Although usually well tolerated, these drugs can have side effects. Their side effect profile tends to be worse than low dose steroids but definitely better than long-term high dose steroids.
Therefore, our policy is to assess whether an individual’s long-term treatment requirements are met by a low dose of prednisone. If higher doses are needed to keep the disease under control and prevent irreversible scarring in the long term, the addition of a ‘steroid-sparing agent’ is considered. If instead the disease can be adequately controlled by a low dose of steroids, we would tend not to use additional drugs, unless there are contraindications to the use of steroids, such as severe diabetes or obesity.
Royal Brompton Hospital's Interstitial Lung Disease Unit runs a sarcoid clinic each Thursday afternoon.
We have more information available about our cardiac sarcoidosis clinic, including what to expect, how the referral system works and how to contact the team.
Experts in cardiac sarcoidosis
Professor Athol Wells
Head of the ILD unit
Dr Rakesh Sharma
Clinical lead for heart failure
Dr Paul Oldershaw
Consultant in cardiology
Dr Sanjay Prasad
Clinical lead in the CMR unit
Dr Kshama Wechalekar
Consultant in nuclear medicine
Dr Vasileios Kouranos
Senior clinical fellow to Professor Wells
You can also contact the cardiac sarcoidosis clinic administrators:
Tel: 020 7352 8121, ext 8018
Fax: 020 7351 8951