A few years ago the American Brain Tumro Assoc. published this information about steroids. I hope you find it helpful.
Steroids
From Messageline a publication of the ABTA
Introduction
Steroids are naturally occurring hormones.
In brain tumor treatment, steroids are used
to reduce the swelling, or edema, sometimes
caused by the tumor or its treatment. The
steroids given to brain tumor patients are
"corticosteroids" – hormones produced by
small glands, called adrenal glands, near the
kidneys. They are not the same as the "anabolic
steroids" used by athletes to build muscle.
Dexamethasone (Decadron) and prednisone
are corticosteroid drugs. These steroids can
temporarily relieve brain tumor symptoms,
improve neurological symptoms, promote
a feeling of well-being, and increase your
appetite. Because steroids are hormones,
their long-term use requires close monitoring.
In this publication we’ll share why steroids are
given, how to manage the effects of steroids,
and a few guidelines for their safe use.
About Edema
Edema is the accumulation of fluids in the
tissue around a tumor – it is a common
occurrence in people who have a brain tumor. Edema happens when the blood brain barrier, an invisible protection around the brain, is disrupted by the tumor. Small blood vessels around the tumor can then leak fluids which collect in the surrounding tissue. Edema can also occur following surgery, radiation, or other treatment for a brain tumor.
Edema can lead to increased pressure within
the brain which, in turn, can cause headaches
and drowsiness. Sometimes the edema
actually causes more symptoms than the
tumor itself. Steroids are medications used
to reduce edema.
When Are Steroids Given?
Steroids may be prescribed before, during, or
after surgery. They may be started at the time
of diagnosis if edema is seen on MRI scan,
or if swelling is causing pressure on the brain.
Steroids may be used to control edema caused
by surgery. In this situation, they may be
started just prior to surgery or during the
procedure. If swelling occurs following
surgery, as it sometimes does, steroids can
be given at that time. If you were on steroids
prior to surgery, your dose might be adjusted
after surgery if increased swelling causes an
increase in your symptoms.
Steroids are also used to treat edema caused
by radiation therapy. Steroids may be started
prior to radiation, or at the time of treatment.
The steroids are continued until the brain
appears to have healed from the acute effects
of the therapy.
For people with a recurrent tumor, or those
with a metastatic brain tumor (which spread
to the brain from a cancer elsewhere in the
body), steroids can help improve quality of
life by reducing symptoms. When used in
this way, steroids may increase a person’s
alertness, ability to be mobile, or perhaps
increase their ability to communicate and
interact with others.
Do Steroids Treat Tumor Cells?
Steroids are not intended to be a "cytotoxic"
or cell-killing therapy. Their purpose is to
reduce swelling, not cure the tumor. However,
some researchers do believe steroids have
some toxic effect on tumor cells. If true, this
effect is probably not great enough to kill
significant numbers of tumor cells or to make
steroids an effective "stand-alone" therapy.
One particular tumor that is very sensitive
to steroids is primary central nervous system
lymphoma (PCNSL). If this type of tumor is
suspected, steroids should not be used until
after the diagnosis is made. There are other
diseases that respond to steroids, and a
pathology reading may be more difficult if
the lymphoma was pre-treated with steroids.
PCNSL can markedly decrease in size on
scans taken immediately following the use of
these drugs. Rather than controlling edema,
steroids destroy lymphoma tumor cells, but
they are not a long-term cure for this tumor.
How Are Steroids Taken?
Although steroids can be started through an
intravenous (IV) line or by injection into a
muscle (IM), most people with a brain tumor
take their steroids by mouth – also called
"orally." The pills come in doses that range
from 0.25 mg to 6 mg tablets, taken between
two and four times a day. Your doctor will
determine the starting dose of steroid based
on your MRI scan and your symptoms. It
will take 24-48 hours before you begin to see
the effects of the medication, but the change
is often remarkable. The dose may need to
be adjusted – either increased or decreased
slightly – depending on how your body
reacts to them.
To protect your stomach, take your steroids
with food or milk. Your doctor may also
prescribe an antacid to be taken daily.
If your doctor prescribes the long-term use
of steroids, don’t be disappointed if your
steroid dose needs to be increased over time.
The goal, of course, will be to find the lowest,
most effective dose of medication that keeps
your neurological symptoms at a minimum.
With time, however, that "most effective
dose" may need to be adjusted. The need
to increase your medication does not
automatically mean your tumor is growing,
and it does not mean you’ve made errors in
taking your medication.
You and your family can be of great help in
this process by keeping your doctor aware of
the way your body reacts to the steroids. If at
any point the side effects become difficult
to manage, please share your concerns with
your nurse or doctor.
When your doctor feels you no longer require
steroids, you will be given instructions for
slowly stopping the drug.
Do not abruptly stop taking your steroids.
The "tapering" process slowly decreases your steroid dose. Your body needs this period of time to again begin producing its own steroids, and to avoid an emergency medical crisis. Lowering steroid levels too quickly can also cause a "rebound" increase in swelling.
Side Effects
Steroids can have several positive side effects.
They can markedly decrease symptoms, give
one an overall sense of well-being, temporarily
increase thought and functioning abilities,
and increase your appetite.
Steroids can also cause a wide range of
effects that must be carefully monitored by
your doctor. The most common side-effects
are: weight gain; thinning of the skin;
gastrointestinal upset; muscle weakness in
your thighs, shoulders, and neck; susceptibility
to infections; "masking" or hiding a fever;
mood swings; insomnia; pneumonia; and
increased blood sugar levels (especially if
you have diabetes.) Steroids can interact with
some seizure medications, either increasing
or lowering their levels in your blood, which
can alter their effectiveness. Other, more
serious side-effects can occur, although
they are less common.
The benefits of steroid use almost always
outweigh their potential side effects. If you
have any questions about balancing risks
and benefits, please talk with your doctor.
Managing Common Side Effects
WEIGHT GAIN and INCREASED BLOOD
SUGAR LEVELS
After a few months of steroid use, you may
begin to notice a significant weight gain. This
is not the "fatty" weight of overeating – it is
your body processing and storing food in a
different way. You may notice your face looks
puffy or moon-like, and you’ve developed a
small hump on your back, just below the
neck, called a "buffalo hump." You may
notice stretch marks across your abdomen as
it increases in size, while your upper arms and
legs seem to become thinner. These changes
are due to your body storing more fat on
the trunk of your body and less in your
extremities. While this is an unavoidable effect
of steroids, there are several things you can
do to help manage this change in your body.
Firstly, steroid weight gain gradually
increases. If you gain more than 5 pounds in
one week, please call your doctor. A sudden,
large weight increase can signal medical
problems that should be reported to your
healthcare team.
Secondly, ask your doctor for a referral to a
licensed registered dietician experienced in
treating people on steroids. This may be a
dietician who regularly works with cancer
patients, or a dietician experienced in
treating people with pituitary disorders.
Either can be of help in outlining a healthy
eating plan that will provide the nutrients
important to your healing, yet limit those
which your body has difficulty with right
now. Since nutritional needs vary from
person to person, a professional is your
best resource for this help.
Thirdly, it’s important that your body
maintain its ability to flush waste out of your
system. Keep your kidneys and bowels in
good shape – don’t stop drinking water. It’s a
natural reaction to try to avoid adding liquids
to your body right now, but that will only
compound the problem.
GASTROINTESTINAL PROBLEMS
Steroids can cause an upset stomach. Be sure
to take your medication with food, milk, or an
antacid that your doctor prescribes for you.
Call your doctor if you have stomach pains,
run a temperature, are constipated, or notice
any blood in your bowel movement. Avoid
the use of non-steroidal anti-inflammatory
drugs (NSAIDs such as Advil, Motrin, Aleve)
and aspirin unless directed by your doctor.
Steroids may affect your blood sugar
level, especially if you are diabetic. If
your sugar levels increase, you may be
referred to both an endocrinologist and a
dietician. In some cases medication may
need to be started or your existing
medication may need to be adjusted.
While you are on steroids, it is especially
important that you have regular bowel
movements. If you become constipated, or
experience diarrhea, call your healthcare team.
INSOMNIA
Sleep disturbances are a possible side effect
of changing hormone levels. If you have
difficulty sleeping, ask your doctor if your
dosage can be adjusted so you take more
medication in the morning and less after
dinner. (Don’t make this change on your
own.) Healthful sleeping habits, such as
avoiding bright light, caffeine and sugar as
bedtime approaches, and a regular nighttime
routine may be of help.
DEPRESSION/MOOD CHANGES
While taking steroids, you might experience
depression, mood swings, irritability, or
agitation. These symptoms are due to the
steroid’s effect on the natural hormone
balance in your body, and can be treated.
Let your doctor know how you are feeling.
Medications may relieve some of these
symptoms and can be particularly helpful if
you remain on steroids for a long period of
time. It is also helpful to discuss these effects
with your family so they know what to expect
and can be supportive.
MUSCLE WEAKNESS
Steroids sometimes cause weakness in the
muscles of the legs, arms, neck and chest.
Leg weakness may be most noticeable when
you get up from a sitting position and try to
use the large muscles in your thighs. If leg
weakness is a problem, ask for assistance
when using the bathroom or getting up
from a chair.Walk with another person who
can get help should you stumble, or try an
assistive device – such as a cane or walker.
If the chest muscles are affected, you may
experience difficulty breathing or pain when
taking deep breaths – especially if you have a
history of asthma, emphysema, or smoking.
Please be sure your doctor is aware of your
past medical history. Ask your doctor about
exercises that may help strengthen your
muscles, or for a referral for physical therapy.
INFECTIONS
Steroids have a tricky way of "masking," or
hiding, the beginning of an infection in your
body. Be alert to anything that just doesn’t
seem right. An increase in temperature may
be the first – or only – sign something is
amiss. Because of that, some people on
steroids take their temperature at the same
time every day, regardless of how they feel.
This is an easy way to keep a baseline check
on your good health. Additionally, look at
your tongue each time you brush your teeth
– people on steroids are especially prone to
yeast infections, or "thrush," in their mouth.
If you notice a thick white coating on your
tongue, make your nurse or doctor aware.
Some people are prone to developing a
certain type of pneumonia after they have
been on steroids for awhile. Your doctor may
start you on an antibiotic to prevent this from
happening. Bactrim is a drug commonly used
for this purpose, but please let your doctor
know if you are allergic to sulfa-based drugs.
Call Your Doctor If....
• You are running a temperature – even if
you feel well otherwise.
• You see any blood in your bowel movements.
• You have stomach pain.
• You gain more than 5 pounds in one week.
• You develop a rash.
• You are drinking and urinating a lot.
• You are falling.
• Chest pains or difficulty breathing may
signal a medical emergency. Call for
emergency help.
While you are on steroids, follow the health
precautions used by people at higher risk
for infection. Wash all fresh fruits and
vegetables carefully. Wear gloves when
using a kitchen knife. Cook meat and
poultry until well done. Use gardening
gloves when working outside. Avoid crowds
and, in general, avoid sick people.
The Next Steps
We hope that the information in this
publication helps you understand how these
drugs work, and provides the knowledge
you need to be more comfortable caring for
yourself or your family member while they
are on steroids. As we stated, the goal of
steroid treatment will be to use the minimal
amount of medication necessary, and to wean
you from the medication as soon as practical.
Regardless of where you are in your treatment,
your task is becoming well again. Make
appointments for your follow-up doctor visits
or scans and mark them on your calendar.
Find a support group if you’d like to meet
others with brain tumors. See friends.
Learn about your tumor.