Muscle weakness due to steroid use

9 Posts | Page(s): 1 

Muscle weakness due to steroid use

by Lizzy65 on Sun Feb 07, 2010 11:38 PM

Quote | Reply

My mom is 80 and was diag. in 11/09 with a glioblastoma grade 4.  She had a crainiotomy in 12/09 where they removed 90% of the tumor. She is undergoing chemo, (temodar), radiation, and an iv infusion of avastin every other week.  She is on 6 mgs of dexamethezon (sp) daily.  I know she's weak from the radiation, but she's having a lot of weakness in her thigh muscles.  The doc says it's from the dex.  We have to push her around in a wheelchair and she is walking with tiny baby steps.  She even fell last week using the bathroom, thankfully, she didn't hurt herself.  Has anyone else experienced this weakness??  Any input would be appreciated.  Thanks!!!


RE: Muscle weakness due to steroid use

by cadalybre on Mon Feb 08, 2010 12:44 AM

Quote | Reply

Yes, my husband has weakness in his thigh muscles from the dex.  He's currently on 2mg a day but was up to 8mg a day last summer.  The doctor told him to do exercises by sitting in a chair, then getting up without holding on to anything to strengthen the muscles.  I don't know if your mom is able to, but that's what the doc told us to do.  I wish you guys the best!  God bless!  Jenny

RE: Muscle weakness due to steroid use

by Lizzy65 on Mon Feb 08, 2010 12:57 AM

Quote | Reply

Thanks Jenny!  The doc did order PT for my mom right after her surgery, but it's over now.  I think I will ask the dr. tomorrow about getting her some more.  When he went down to 2 mgs, did that help him?  Did he regain his strength?  Mom's that may be a problem too.

God bless you and your husband too! <3

RE: Muscle weakness due to steroid use

by cadalybre on Mon Feb 08, 2010 05:08 AM

Quote | Reply

Hi Lizzy65,

My husband gets really off-balanced when his tumors are causing swelling in his brain, which makes him weak.  The increased steroid gives him back his balance and strength overall, I think the weakness from the steroid in his thighs has remained steady through the dex increases/decreases.  Exercising has helped him....he doesn't really do it intentionally, he watches a lot of TV now that he can't be active like he used to be, so he gets the exercise getting up from the chair to go to the kitchen to get something to eat (hungry from the steroids)  :)  Gotta laugh there at least a little!!  I hope your mom is able to be helped by the PT, I'll pray now for her, and you!!  God bless you!  Jenny

RE: Muscle weakness due to steroid use

by Lake75 on Mon Feb 08, 2010 05:16 AM

Quote | Reply


My mom has the exact same problem with muscle weakness in her thighs.  It is most definitely the dex.  My mom continues to do physical therapy which helps.  Maybe your mom can receive more therapy?  If not, ask for suggestions from her doctor or if you know of a physical therapist you could ask.  My sister is a PT and I will ask her what exercises she is doing with my mom.  


RE: Muscle weakness due to steroid use

by SmittysLove on Mon Feb 08, 2010 03:55 PM

Quote | Reply

Our NO and the Radiatin Oncologist and NS all told us to expect weakness in the 'quads' - the thigh front - from the dex.  Luckily my husband has always been a runner, biker & swimmer, so he immediately started riding his bike in the morning, weather, etc. permitting.. that has helped tho he still has some weakness.

He is on Avastin and, for now, seems to be working very well. So we're at the 'lucky' stage, right now. How I wish everyone here was also!

But yes, the thigh weakness is due to the dex according to all of our doctors.

RE: Muscle weakness due to steroid use

by Lorre_G on Mon Feb 08, 2010 04:49 PM

Quote | Reply

Here is the info in steroids that I give to patients.  I think it is sub-standard care to give patients medications without explaining the proper use, the side effects and the treatment of the side effects. 


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.Howeve r,

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 toavoid 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



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.


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



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.


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.



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.



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. Our web site –

– offers extensive brain tumor

information, treatment and research updates,

and patient/family stories. The thread

that runs through each of our services and

programs is hope. Become involved – join us

in some way, to make sure there is a cure, and

ultimately, a way to prevent brain tumors.

We hope that the information in this

pamphlet helps you communicate better

with the people who are caring for you.

Our purpose is not to provide answers;

rather, we encourage you to ask questions.

From Messageline a publication of the ABTA Spring 2004 - Volume XXXI, Number 1


RE: Muscle weakness due to steroid use

by gleassu on Tue Feb 09, 2010 01:51 AM

Quote | Reply

Great information Lorre G, this is really helpful.  Lizzy65 and I are sisters taking care of our mom along with several other siblings.  We really appreciate all the care, support, and information received here on this message board :)

RE: Muscle weakness due to steroid use

by Lizzy65 on Tue Feb 09, 2010 02:07 PM

Quote | Reply

Thanks for the info Lorre!  I had to wait until this am to read it all!  Good stuff to know.  Mom will not be getting any pt right now due to her extreme fatigue, but God willing, when her treatments are over we can get her up and moving more.  In the mean time, she just rests as much as possible and eats well.  This is the first time anyone in my family has had to deal with cancer.  I must say, it sucks big time.

As they say in jolly old England, keep your pecker up! (they mean chin!)

Good luck and God bless!


9 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.