When is treatment needed?
In 6 out of 10 cases, sarcoidosis gets better without medication. Your doctor may watch your symptoms for a few months before starting you on any medication. You may have regular chest X-rays, breathing tests and blood tests to monitor your condition.
If treatment is not necessary, doctors will avoid it, so that you do not have any unnecessary side-effects from medication.
If your sarcoidosis is causing you pain, such as muscle or joint pain, a painkiller such as paracetamol or ibuprofen can help. Some people cannot take ibuprofen, so talk to a doctor or pharmacist before taking it. You can check on the NHS website.
Treatment will be necessary if:
- symptoms are seriously affecting your quality of life
- doctors think the sarcoidosis could permanently damage your lungs or other organs.
Treatment for sarcoidosis is given to improve your symptoms and prevent scarring and damage to the affected parts of your body. You should be clear with your doctor about your symptoms and how much they are affecting you. Whether you start treatment should be a joint decision between you and your doctor.
If treatment is necessary, you will usually be given a steroid medication. This is usually in the form of tablets.
You will usually have a higher dose at the start of your treatment, which will gradually be reduced to a lower dose. Your doctor will monitor you and you may be able to come off steroids after six months.
Some people have to take steroids for longer. Steroids can cause side effects. These are more likely if you’re taking them for a long time or at a higher dose. They can include:
- feeling hungry more than usual
- weight gain
- mood swings
- difficulty sleeping.
Steroids can also cause weakening of the bones, known as osteoporosis. Your doctor will monitor your bone density and may give you medication to prevent osteoporosis.
Talk to your doctor before taking calcium or vitamin D supplements. Sarcoidosis can increase your level of vitamin D, which absorbs calcium. For this reason, some people with sarcoidosis already have high calcium levels. This can put you at a higher risk of developing kidney stones. If you need to have vitamin D or calcium supplements, your doctor will monitor your calcium levels.
Read the NHS advice about taking steroid tablets.
If your sarcoidosis is getting worse quickly, you may need to take steroids directly into your veins through an IV drip, but this is rare.
For a small number of people, steroids do not work to control the symptoms of sarcoidosis. Some people may have severe side effects from steroids too.
If this is the case, you may need to take medications called immunosuppressants that help control your body’s immune system.
These medications can cause side effects and may increase your risk of infection. If you need to take them, you will have regular blood tests to monitor your liver and kidney function and blood count.
Looking after yourself
It’s important to eat well and maintain a healthy weight if you have sarcoidosis.
Stress can trigger sarcoidosis symptoms. Talk to your friends, family or a health care professional about how you feel. We also have advice on looking after your mental health.
If you smoke, the best thing you can do to look after your health is to quit. We have information and support to help you quit smoking.
Exercising can help you manage sarcoidosis symptoms and improve your quality of life. We have a lot of information about keeping active with a lung condition. Our Stay active, stay well exercise videos can help you start exercising.
Pulmonary rehabilitation can help people with pulmonary sarcoidosis reduce breathlessness and fatigue. You can talk to your GP, practice nurse or respiratory team about what’s available in your area.