Steroid treatment for inflammation caused by immunotherapy

Taking steroid tablets for less than four weeks does not usually cause major side effects. But if you take them for longer or at a high dose, some side effects may occur. Some patients may not experience any side effects at all.  

Possible side effects of steroid tablets include:  

• Indigestion or heartburn  
• Increased appetite, which could lead to weight gain when used long-term  
• Difficulty sleeping  
• Mood and behaviour changes, such as feeling irritable or anxious  
• Increased risk of infections, especially chickenpox, shingles and measles  
• High blood sugars or diabetes  
• Weakening of the bones (osteoporosis) – this is more common with long-term use. If you already have osteoporosis, please tell your doctor as you may need treatment to help strengthen your bones.   
• Joint damage – more common with high-dose steroids  
• High blood pressure  
• Cushing's syndrome, which can cause symptoms such as thin, easily bruised skin, fat build-up on the neck and shoulders, and a red, puffy, round face 
• Eye problems, such as glaucoma or cataracts  
• Mental health problems, such as feeling low, depressed or, rarely, suicidal.  

The side effects will usually get better once you finish the steroid treatment. But you should never stop your steroid medication without speaking to your doctor. They will advise you on how to gradually reduce your dose if necessary.

If possible, take your steroids with food in the morning. This helps to reduce stomach irritation and can prevent sleep problems at night. 

We will also give you a tablet to take alongside high-dose steroids to protect your stomach from irritation.  

If you are on steroids for more than three weeks, your doctor or specialist nurse may prescribe:  

• Bone strengthening medicine to help prevent your bones from becoming weak  
• A low dose of antibiotics to lower the risk of infection. 

If you notice any new symptoms or side effects, please report them to your team. For urgent queries contact the 24-hour oncology urgent advice line on 020 3447 3893.

When you are on steroid treatment, we will give you a steroid emergency card. Always carry this card with you. Show it to anybody that treats you when you take steroids and up to one year after stopping them.

Your healthcare team will advise you on how to lower your steroid dose safely. They will also tell you if you need a blood test to check your cortisol levels before you do so. 

Not everyone needs their cortisol levels checked before weaning steroids. If you feel well, you can reduce and stop steroids as advised by your healthcare team, without needing a blood test. 

However, you will need a morning blood test to check your cortisol levels:  

• If you feel unwell after stopping long-term steroids.  

OR 

• If you feel unwell and are on a low dose (like 3mg of prednisolone or 12.5mg of hydrocortisone).  

Before the test, you will need to stop taking your steroids because they can affect your test results. Your healthcare team will give you detailed advice on how to do this. Depending on the test results, we will advise you if it is safe to stop steroids completely. If your cortisol levels are too low, you may need to continue taking a low dose, usually prednisolone. We will also refer you to a doctor who specialises in hormone-related conditions (an endocrinologist) for more advice.

When your steroid dose is reduced, you may experience some of the side effects you had during immunotherapy. These include diarrhoea, joint aches, or skin rash or itching. Contact your healthcare team for advice if you are worried about any of your symptoms.

An adrenal crisis, also called adrenal insufficiency, happens when there is not enough cortisol in the body. This can happen if:  

• Your steroid dose is lowered but your body has not started to make enough cortisol yet. 
• You stop taking steroids suddenly.
• Your immunotherapy treatment affects your adrenal or pituitary glands. The pituitary gland in your brain controls how much cortisol your adrenal glands make. If immunotherapy stops the pituitary gland from working, your adrenal glands can stop working too. This can cause an adrenal crisis.  

If not treated promptly, an adrenal crisis can be life-threatening.

Symptoms of adrenal crisis include:  

• Feeling very tired  
• Feeling sick or being sick  
• Dizziness  
• Loss of appetite and weight loss.

Your healthcare team will explain the advice below and answer any questions you have. 

If you are on steroid treatment and become unwell, you may need to increase your steroid dose. This is called ‘sick day rules’. The following instructions apply if you take one of these two steroids:  

• 10mg or less of prednisolone 
• 40mg or less of hydrocortisone. 

If you are taking other steroids, your healthcare team will tell you if you need to increase your dose. 

Here is when you may need to adjust your dose: 

• Mild illness without fever: No need to change the dose.  
• Illness with fever: If your temperature is 37.5°C or higher, double your steroid dose while you are ill. Do not increase your dose if you are already on 10mg or more of prednisolone or 40mg or more of hydrocortisone. Call your healthcare team or urgent advice line on 020 3447 3893 without delay.  
• Vomiting or diarrhoea:  
  • If you vomit within 30 minutes of taking your steroid, take another dose after vomiting stops. This dose should be double your regular dose. For example, if your regular dose is 10mg of prednisolone, your double dose will be 20mg of prednisolone.  
  • If you continue to vomit or have ongoing diarrhoea, go to the local Emergency Department (A&E) or call 999. Bring your steroid emergency card and show it to the team looking after you. They will then know that you are at risk of adrenal crisis and may need a steroid injection.  
• Feeling very unwell and experiencing any of the following symptoms: Take an extra 20mg of prednisolone OR 50mg of hydrocortisone if you are able. Call 999 without delay.  
  • Dizziness  
  • Extreme thirst 
  • Shaking  
  • Drowsiness, confusion or feeling very tired   
  • Severe vomiting or diarrhoea  
  • Shortness of breath. 

If you take more than 10mg of prednisolone and become unwell, your team may advise you to split your daily dose into two equal doses, one taken in the morning and one by 3pm. For example, if you take 20mg of prednisolone, you may need to take 10mg in the morning and 10mg by 3pm. 

You will also need a higher dose of steroids if you are on 10mg or less of prednisolone or 40mg or less of hydrocortisone and you are:  

• Having surgery 
• Having a dental extraction  
• Admitted to the hospital being unwell.  

In these cases, your healthcare team will give you an extra dose by mouth, through an injection into a vein, or into a muscle.  

If you have any questions or worries about steroids, please speak to your doctor or clinical nurse specialist (CNS). Or call the 24-hour oncology urgent advice line on 020 3447 3893. 

If you have a paper copy of this page, you can complete your team’s details below: 

My doctor/CNS is: ………….. 

Tel: …………..  

References

• The Clatterbridge Cancer Centre (2021) Adrenal /Pituitary insufficiency following Immunotherapy https://www.clatterbridgecc.nhs.uk/application/files/8515/9732/8437/Adrenalpituitary_insufficiency_following_cancer_immunotherapy_A_quick_guide.pdf
• The Pituitary Foundation Website on Adrenal insufficiency Information, Available at: https://www.pituitary.org.uk/information/adrenal-insufficiency/
• Society for Endocrinology, Steroid Sick day rules. Available at: https://www.endocrinology.org/media/4169/ai-and-exogenous-steroids_patient-information-sheet.pdf
• Society for Endocrinology, Adrenal Crisis Information. Available at: https://www.endocrinology.org/clinical-practice/clinical-guidance/adrenal-crisis/
• NICE (2024) NICE Guideline on Adrenal insufficiency: identification and management. Available at: https://www.nice.org.uk/guidance/ng243/chapter/recommendations#at-diagnosis