Steroids for brain tumours
Following a brain tumour diagnosis, it’s likely that you’ll be given steroids at some point during your treatment. These don’t treat the brain tumour itself, but could help to manage its side-effects.
The steroids used for brain tumour treatment are called corticosteroids. These are NOT anabolic steroids, which are used by some athletes to build muscle.
What are steroids?
Steroids are hormones that are produced naturally in our bodies in small amounts. They help to control swelling when our body is injured.
Sometimes our bodies don’t produce enough to reduce the swelling. Fortunately, steroids created in a laboratory for medical purposes can be given in these cases.
How do steroids help brain tumours?
Brain cells in and around a tumour, or the area treated by surgery or radiotherapy, can swell and put pressure on surrounding tissues. This can cause symptoms, such as headaches and seizures.
Steroids help with symptom management rather than treating the tumour itself. So, you may be given them after diagnosis, or before or after these treatments to reduce the swelling and relieve those symptoms.
You may also be given a low dosage of steroids if you’re having chemotherapy or radiotherapy and feeling sick.
Before being given steroids for a brain tumour
Your healthcare team will talk through what will happen and discuss any potential side-effects with you before any steroids are given.
This is your chance to ask any questions. Remember, no question is a silly question.
It can also help to find out who you should contact and how to reach them if you have any questions or concerns at a later time.
While taking steroids for a brain tumour
The steroid most commonly used with brain tumours is dexamethasone. They are fast-acting drugs, so the effects caused by the tumour can reduce quite quickly. They may need to be taken at set times of day.
They can be taken as:
Tablets are the most common way to take steroids. If you have difficulty swallowing tablets, try practising with tic tacs®.
The colour and dosage of the tablet/medicine will depend on which one you’ve been prescribed.
Steroids are only likely to be given by injection when you’re in hospital or if you’re unable to take tablets by mouth.
How long can you take steroids for a brain tumour?
Steroids’ side-effects usually appear over the long term. So, because of this, steroids are mostly given for a limited time and stopped before the side-effects can appear. Steroids are usually prescribed for a short period ranging from a few days to a few weeks.
That being said, if the person affected by a brain tumour has a short to medium term prognosis, steroids can be prescribed for longer. This is because the side-effects likely wouldn’t arise during their life expectancy. But, your medical team will discuss this with you based on your prognosis.
You should never suddenly stop taking steroids or reduce your dosage without guidance from your medical team. This can make you very unwell.
Jennifer talks about using steroids during her brain tumour treatment.
Arvin Kaushal, diagnosed with 6 germinomas in 2015
“One minute I was an ambitious young man enjoying life, the next I was diagnosed with six brain tumours and having aggressive radiotherapy. The fluid in my brain also became blocked, so I was given steroids.
“I put on seven stone, became depressed and didn’t want to go out. Then I was diagnosed with diabetes insipidus and a fatty liver and told to lose weight.
“This was a turning point. I didn’t want any more health problems so, after being given a smartwatch, I was on a mission.
“I walked around the kitchen while I made breakfast, or did half an hour on a treadmill in front of the TV. I then walked into town with mum, resting at bus stops, and walked with dad to reach 10,000 steps each day. Eventually my physiotherapist said I could lift weights to burn fat.
“It took two years, but I’m down to my old weight!
“I still have fatigue and dizziness, but my next goals are to go back to work and do a 5km run.
“I’m proud I’ve lost weight and so grateful for my family’s support.”
Join one of our Online Support Communities for more stories and tips about coping with a brain tumour diagnosis from people who know what you’re going through.
Monitor your side-effects
Steroids, like any medication, can cause a variety of side-effects. But if you experience any, you should talk to your doctor. Use BRIAN’s quality-of-life tracker to record and monitor them, then share this with your healthcare team so they can support you.
After taking steroids
As with many medications, steroids affect different people in different ways. Their effect will also depend on the exact type and dosage prescribed for you. Talk to your healthcare team about any side-effects you experience.
At the end of your treatment, your specialist is likely to reduce your dosage gradually.
This is because, after taking steroids for a few days, your body will be producing less of its own natural steroids. Reducing the dosage of your medical steroids allows your body to start producing its own again.
Please remember that you should never stop taking your steroids suddenly or reduce your dosage unless your specialist advises you to. It can make you very unwell.
Always make sure you have enough tablets on repeat prescription, by talking to your GP.
If steroids don’t work
Although treatment plans are carefully developed by healthcare professionals to be as effective as possible while having the fewest risks or side-effects, sometimes steroids might not work.
This can be worrying, but just because one treatment hasn’t worked, it doesn’t mean others won’t.
Tips from our community
“Steroids gave me a massive appetite and constipation – not a nice combination! I’d suggest taking laxatives and stool softeners as soon as you begin the steroids, as this really helped me.”
“Coming off steroids has to be managed really carefully, as the side effects can be horrendous for some people. My son reduced his dosage gradually with the help of his medical team and this has helped make it a lot easier.”
“Reducing steroid dosage is an art form in itself! I think the rule of thumb is if you start reducing and get any symptoms, then you should put it up again for a while and then try reducing the dose much more slowly. But your medical team should be able to advise on that.”
“When I was on steroids I had a huge appetite and couldn’t stop eating. Even when I was full! But as soon as I started coming off them I lost all the weight I’d put on. They are a necessary evil and whilst I hated the weight, overall they made me feel much better and prevented further damage to my brain.”
By joining one of our Online Support Communities, you can get more tips about living with or beyond a brain tumour diagnosis from people who truly understand what you’re going through.
Frequently asked questions
Steroids are usually given in short courses of a few days or a few weeks. Keep taking your steroids for as long as your specialist tells you to.
If you have to take them for longer than a week, you’re likely to be given a steroid card.
It has important information about the type and dosage you take, which may be needed in an emergency.
Carry it with you at all times.
Your doctor may advise carrying it for up to a year after your steroid treatment has ended.
You should make every effort to remember to take your steroids when you’re required to. Leave yourself a note or set an alarm to remind you.
If you do miss a dose, do NOT try to compensate by taking a double dose next time. Similarly, if you are sick shortly after taking a tablet, don’t take another dose.
In these cases, speak to your healthcare team to see what they advise.
Find out more in the full fact sheet.
Find out more in the full fact sheet – Clear print version, designed to RNIB guidelines.
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