Steroids for a brain tumor: what they do, and when it might be the drug and not the tumor

Why you were put on a steroid. Why you can feel better while the tumor is unchanged. What the drug does to sleep, appetite, mood and muscle strength. Why coming off it is your team's decision and never yours alone, and how to tell them what you are seeing.

The short version

A steroid takes down the swelling that a tumor causes in the brain around it. It is not chemotherapy, and for most brain tumors it does nothing to the tumor itself. That is why you can feel much better within a day or two while the tumor is exactly as it was. Most people improve on it. Not everybody does. The trade is that a steroid has strong effects of its own: hunger, broken sleep, changes in mood, and weakness in the big muscles of the thighs and upper arms. Those can look like the tumor getting worse when they are not, and your team can often do something about them. Do not stop a steroid on your own. It is brought down on a plan, and the plan is worth having in writing.

What is it, and what is it doing?

It is a medicine that brings down swelling inside your head.

The brain around a tumor gets waterlogged. Doctors call that swelling edema. It takes up room in a skull that cannot stretch, and a lot of what you feel comes from that rather than from the tumor itself: headaches, feeling sick to your stomach, and whatever that part of the brain does being done worse.

A steroid dries that swelling out. The commonest one used for this is dexamethasone. Some teams use a different one. They work the same way.

These are not the steroids that athletes get into trouble for. Those are built to add muscle. This kind copies a hormone your own body makes every day, and at the dose used here it works against swelling.

For most brain tumors the steroid works on the swelling, not on the tumor. So the relief is real and the tumor has not changed. People find that confusing, and some take it as bad news. It is not. The swelling is causing symptoms, so treating the swelling treats symptoms.

There is one exception, and it matters before any sample is taken. For lymphoma in the brain, a steroid can shrink the tumor itself, and quickly. That sounds like good luck and it can cost you the diagnosis, because what is left may be too changed to name under a microscope. This is why a team may want the sample first if they can safely wait. If you have already been started on a steroid, say so and do not stop it yourself. It happens: a steroid is sometimes started in an emergency room, days before anyone says the word lymphoma. It is a known situation, and it is your team's to work around. CNS lymphoma covers that. For every other tumor on this site, the steroid is working on the swelling and not on the tumor.

Why am I taking one?

Because something is swelling, or is about to.

• The scan showed swelling around the tumor. This is the usual reason, and the steroid is aimed at that.
• You are having an operation. A steroid is often given before and for a few days after. Brain surgery covers those days.
• You are having radiation. Treatment can cause swelling of its own. Radiation therapy covers that stretch.
• Something happened that your team thinks is swelling. A headache that is building, or an old symptom coming back.

If you are not on one, that is a decision too. Guidelines say a steroid is for people with symptoms, and there is no good evidence for giving one to somebody whose tumor is quiet. Being left off it is not being left out.

What happens, step by step

A course of steroids has a shape, and knowing the shape makes the changes make sense.

1. You start on a dose that is higher than you will stay on. The point is to get the swelling down.
2. You notice a change quickly. Most people start to feel better within hours, and the full effect is usually there in a day to three days. Not everybody improves, and the studies that counted it disagree about how many do, so nobody can promise you will. If it is not helping you, say so rather than waiting it out.
3. The dose comes down to the smallest one that holds the symptoms off. That is the aim of the whole thing: the lowest dose that works, for the shortest time.
4. The dose may go up again for a while. During radiation especially. That is expected, and it is not a setback.
5. When the reason for it has gone, you come off it in steps. That is called a taper. Your team writes the steps down for you.
6. You are watched while it comes down. If old symptoms start to return as the dose drops, that is something to report, not something to push through.

Nobody agrees on the exact doses or the exact taper. There are no standard rules for it, which is why the plans differ between hospitals and why yours has to come from your own team.

How long will I be on it?

It depends entirely on why you are on it, and the honest range is days to months.

After an operation it can be a few days. Around radiation it is usually weeks. Some people with ongoing swelling stay on a low dose for months. Many people come off it once their treatment is over.

Coming off is done in stages, and a few weeks is common for that part. The longer you have been on it, the slower the last part tends to go.

So the useful question is not how long in general. It is: what is my plan, and what would change it?

Why can I not just stop taking it?

Because your body stops making its own while you are taking this one.

You make a steroid hormone of your own, every day, and you need it. When a higher dose arrives from outside, the part of you that makes it goes quiet. Take that outside supply away all at once and there is nothing to step in, and that can make you very ill.

So the dose is walked down in steps instead, which gives your body time to start again. The other reason for going in steps is simpler: the swelling can come back, and coming down slowly lets your team catch that while it is small.

Two things follow from this, and they are the practical heart of the page.

Do not stop, skip or halve a dose on your own, and do not let the bottle run out. If a side effect is bad enough that you want to stop, that is a call to your team, and it is a reasonable call to make.

Stopping is their decision, and it is not always slow. After a short course, a few days for example, a team may simply stop it, and that is fine because your own supply never had time to shut down. The rule is not "always slowly". The rule is "not on your own".

And tell anybody treating you that you are on a steroid, or recently came off one. If you get seriously ill or need an operation, the dose may have to go up for a few days to cover it. That is a known thing with a known answer, and it only works if the person in front of you knows.

What does it feel like?

The first few days are often the best you have felt since this started. The headache eases. You can think again. People say they feel unusually well, and that feeling is part of what the drug does.

Then the rest of it arrives. You are hungry in a way that is hard to explain to anyone. You are awake at three in the morning with your brain running. Your face changes shape, rounder and puffier than it was, and you notice it in photographs before anyone says anything.

None of this means anything has gone wrong. These are the known effects of the medicine, they are stronger on a higher dose and after longer on it, and the hunger, the sleep and the puffiness all settle again after you stop.

Is it the tumor, or is it the steroid?

This is the question this page exists for.

A steroid causes several things that look exactly like a tumor getting worse. The big one is muscle weakness.

The weakness in your legs and arms

It shows up as trouble getting out of a low chair, climbing stairs, or lifting your arms above your head. It affects the big muscles closest to the body, the thighs, hips, shoulders and upper arms, and it usually comes on over weeks rather than all at once. Doctors have a name for it: proximal myopathy. Your team will test your strength, your feeling and your reflexes, and what they find is part of how they tell the two apart.

It is one of the most common problems with a long course, and how often it happens is genuinely unsettled: studies have counted it in different doses over different lengths of time and come back with very different answers, so there is no honest number to give you. What they all agree on is the direction. It gets more likely the higher the dose and the longer you are on it, and it is unusual in the first days.

Now the part that makes it hard. Weakness in somebody with a brain tumor can come from the tumor or the swelling. It can also come from the steroid treating that swelling. The two need opposite things: more steroid, or less. That is why this is not something to work out at home, and it is also why changing your own dose is the one thing not to do.

What to do is simple. Tell your team what you have noticed and when it started. Say which movements are harder, because the pattern is a large part of how they tell the difference. It is a phone call, not a wait for the next appointment.

And it does get better. When the dose comes down, the strength comes back, though slowly: weeks to months rather than days. Ask about seeing a physical therapist, and ask what movement is safe for you now. Keeping active is thought to help protect the muscles, and a therapist can tell you what is worth doing and what is not, which matters if you are already unsteady.

The other things that get blamed on the tumor

• Mood and temper. A steroid can make you restless, irritable, anxious or low, and it can swing you between them. Families read this as the person changing. It usually settles when the dose comes down.
• Not sleeping. Broken sleep is one of the commonest effects of this drug, so it is worth knowing it is not all worry.
• Feeling flat when it is reduced. Coming down can bring aches, tiredness and low mood of its own.
• Being confused, or not yourself. Steroids can do this at higher doses. It is one to report the same day rather than to watch.

Seizure medicines cause their own version of this, and the two are often given together. Anti-seizure medicines goes through the seizure medicine on its own, including how the timing tells a drug effect from a tumor effect.

None of this is a reason to stop a medicine, and all of it is a reason to tell somebody. A dose can come down. A medicine can be traded for a different one. Neither happens while nobody knows.

The rest of the side effects

Which of these you get varies from person to person, and they are stronger on a higher dose or after a while on it. Most fade once the steroid stops. The changes to skin and bone are the ones that may not, which is part of why your team keeps trying to get the dose down.

In the first days and weeks:

• Hunger, and weight going on. Sweet things especially. Your appetite goes back to normal afterwards.
• Trouble sleeping. Taking the dose earlier in the day helps, and your team can tell you how early.
• Indigestion. Take it with food or a milky drink. You may be given a second medicine to protect the stomach.
• Higher blood sugar. Being very thirsty and needing to pee a lot are the signs. It can be checked with a simple test. If you already have diabetes, expect to check your levels more often and to have your other medicines adjusted.
• A puffy face, ankles or feet.
• Mouth infections. A sore mouth, or creamy white patches on the tongue. Treatable, usually in a few days. Brushing and rinsing regularly helps.
• Infections generally, and less of a fever to warn you. A steroid quiets the immune system and can hide a temperature, so any fever at all is worth reporting even if you feel fine otherwise.
• Hiccups that will not stop. An odd one, and it is a known effect of the dose.

With a longer course:

• The muscle weakness above.
• Thin skin, easy bruising, stretch marks and acne.
• Weaker bones. Which is why a fall matters more than it used to, and why new hip pain is worth mentioning.
• A higher chance of chest infections, including an unusual pneumonia that some teams give a preventive antibiotic against.

Your team weighs all of this against what the swelling is doing. That is the whole reason they keep trying to get the dose down.

Why does my team ask about my steroid dose before a scan?

Because the steroid changes what the scan shows.

It tightens up the leaky blood vessels the contrast dyecontrast dye: A liquid put into a vein before some scans. It makes certain tissues stand out, which helps show where a tumor is. It does not always show the whole of it. See the glossary follows, so a scan taken after the dose has changed can look different even when the tumor has not moved. The rules doctors use to judge whether a tumor is growing take your steroid dose into account, which is why they ask, and why a dose change just before a scan is worth mentioning without being asked. Follow-up scans covers how one scan is compared with the last.

When to call, and what about

This list is about the steroid. It does not replace the list your own team gives you for your tumor, and get help now has the numbers to keep on a phone.

If your body has stopped making its own steroid, the whole same-day list below is a right-away list for you. That is the case after pituitary surgery, and when the pituitary is not making enough on its own. It is also true once you have been on this medicine long enough for your own supply to go quiet, which is what the section above describes. Without that hormone an ordinary illness can turn into an adrenal crisis, which the Endocrine Society says can kill if it is not treated. So do not wait for the same day on any of it. Phone at whatever hour it is, and say you take a steroid your body cannot make on its own.

Throwing up again and again, confusion, and feeling faint are what an adrenal crisis looks like. If those are happening, call 911, or your local emergency number, and get to a hospital. Pituitary tumor has the full rule.

Call your team the same day if:

• You cannot keep your pills down. A steroid you cannot take is not a small problem, and there are other ways to give it.
• A headache keeps building, or an old symptom comes back. This matters at any point, and most of all while the dose is coming down.
• You feel faint, dizzy standing up, sick, or wrung out after a dose was missed or lowered. That is the shortage this page describes, and it is treatable.
• You have a fever, even with nothing else wrong. If you are also having chemotherapy, a fever is a call right away, at any hour, and not a wait for the morning. The fever rule explains why.
• You are throwing up again and again.
• You are confused, or somebody says you are not making sense.
• There is new weakness in an arm or a leg, including a chair or the stairs becoming hard when they were not.
• There is new trouble speaking, or with your vision, or you are sleeping much more than you are awake.
• There is blood in your stool, or you have bad stomach pain. A steroid can take the edge off the warning signs, so pain that would normally send you to a doctor still counts even if it feels less than it should.
• You stumble or fall. Your bones are more easily hurt on a steroid, so a fall is not something to shrug off.
• You have been near somebody with chickenpox, shingles or measles. There is treatment for that, and it works best early.

Call an ambulance for chest pain or trouble breathing. Call 911, or your local emergency number. The same goes for suddenly not being able to speak, move one side, or see, or for somebody who cannot be woken. What to do in a seizure draws the line for seizures.

Tell your team about these as well:

• Being very thirsty and needing to pee a lot.
• Gaining more than five pounds in a week.
• A rash, or sores in your mouth.
• A cough that will not go, or stinging when you pee.
• Any wound or cut that is slow to heal.

If you are not sure which of these it is, phone. That call is a much smaller thing than any of the problems on this page.

What you can do

• Get the plan in writing. The dose now, the steps down, and the dates. Ask for a new copy every time it changes.
• Do not run out. Order the next prescription before you are near the end of this one. Stopping because the bottle is empty is still stopping.
• Take it with food, and earlier in the day, unless you were told otherwise.
• Keep a short diary. The date, the dose, how you felt, anything new. One hospital's steroid booklet is laid out as exactly that, for a good reason: dose decisions get made on what you noticed last week.
• Tell anyone else who treats you. Your family doctor, your dentist, the pharmacist, anyone in an emergency room. Carry a note of the dose.
• Keep moving if you safely can, and ask about a physical therapist before the stairs become the problem.
• Say if you feel unlike yourself. That is information, not complaining.

For the person caring for someone on steroids

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

Three things that are specific to this medicine.

The changes you are seeing may be the drug. The short temper, the hunger, the three-in-the-morning energy, the struggle to get out of a chair. It is fair to say all of it out loud at the appointment, in front of them, as something the team may be able to fix.

The dose changes hands. It is started by one doctor, changed by another, and often prescribed by a third. If a change is made over the phone, write down who said it, so the record they are all working from is the same one.

Two on that list you are likelier to spot than they are: not being able to keep the pills down, and old symptoms creeping back as the dose drops. Somebody feeling rough often puts both down to the day they are having. Both are usually sorted out when a team hears about them early.

Why has my dose gone up again?

Usually because there is more swelling to deal with, not because the tumor has won.

The commonest time for it is during radiation, when the treated area can swell. It is common enough that it is planned for. A headache is the usual reason a dose gets put back up.

It can also happen if a taper was tried and the symptoms came back. That is information, not failure: it tells your team the swelling still needs treating, and they will try again later.

What matters is that the increase is a decision somebody made and wrote down, with a plan to come back down again. Ask for that plan the same way you asked the first time.

Who is in charge of my steroid?

Ask, because the answer is often less obvious than it looks.

A surgeon may start it, an oncologist may change it during treatment, and your family doctor may end up writing the prescriptions. Many teams have a nurse who handles the day-to-day of it, and that is usually the best number to have.

This is worth being blunt about. In one audit at a UK center, over three months, most of the people started on a steroid had nothing written down about how they would come off it at that point. The same audit found more problems in the people whose course ran past a couple of weeks, and in the people with no written plan at all.

So the two questions that protect you are: who owns this medicine, and where is my plan written down? Neither is a difficult thing to ask, and both are the kind of thing that falls between people when nobody asks.

What to ask your team

• Why am I on this, and what is it treating?
• How long do you expect me to be on it?
• What is the plan for coming off, and can I have it in writing?
• Who do I call about the steroid, and who changes the dose?
• What should I watch for that would mean the dose needs changing?
• Which of the things I am feeling are the steroid rather than the tumor?
• Should my blood sugar be checked?
• Do I need something for my stomach?
• Is there anything I should be doing to keep my strength up?
• Can I see a physical therapist?
• What do I do if I am sick and cannot keep it down?
• What do I do if I miss a dose?
• Does the steroid interact with my other medicines?
• Is there anything else that would let me take less of it?

Where to go next

• Brain surgery for the operation and the weeks after.
• Radiation therapy for the course and its swelling.
• Follow-up scans for how a scan is compared with the last one.
• Getting ready for surgery for what happens to your medicines around an operation.
• Brain tumor types if you want the page for your own tumor.
• Get help now if you need to talk to a person today.