dexamethasone nightmare!

dube03 said:

Her steroid is called
Her steroid is called dexamethasone, we are in Canada. I don't know if that is different than decadron?

goa19 said:

Mother going off of Dexamethasone/Decadron for Brain Swelling
It's been a week since my mother went off of her last dosing of this drug. She was taking it because of the swelling from tumors in her brain while doing 2 weeks of radiation. Over a period of 6 weeks, her dosage was 16mg, 12mg, 8mg, 4mg, 2mg, then 2mg every other day. She often had trouble sleeping, despite having an anxiety/depression/sleep aid pill to take. Every time her dosage would change, we would notice her thinking and speech become a bit strange, then go back to semi-normal. Now that she is completely off this drug, she has intense back pain ( which may be from sitting around? and which is also affecting her ability to comfortably sleep and sit), a bit of shortness of breath, bloating ( which she began to have a few weeks after beginning this drug), trouble with thinking& speech, and intense fatigue- she is so tired and can barely get around on her own. I need to help her get up and turn over constantly. I saw some people had a few of these symptoms. I don't know if this is just normal or if I should be contacting the doctor? We have a follow up in a few days, but I don't know if I should contact someone now... Thanks for any help.

cindysuetoyou said:

I would call
It seems like coming off steroids affects people differently, but I would call your neuro-oncologist. Always better to be safe than sorry. It's worth a call just to bring you some peace of mind, if nothing else.

My son was taking decadon for brain swelling after a procedure and I think the dr tapered off the steroids too quickly. My son started having issues with speech, moving and answering questions slowly, etc. I called the NO and he increased the steroids again for now. My son's issues cleared up and he started feeling better almost immediately after going back up on the steroids. He's currently taking 4 mg every 6 hours, even during the night.

Blessings,
Cindy in Salem, OR

I_Promise said:

yes call your NO
My sister was trying to wean herself off the dexamethasone from 2mg daily to 1.5mg for 4 days and then 1mg. This when she had no concentration, walking like a 80 year old woman (she is 30). I was afraid it was swelling in her brain due to the cyst and that the reservoir needed to be tapped. But the MRI showed no difference from the last one. It was concluded that she could not tolerate going down from 2mg. She is back on 2mg and I see a net improvement. She is going to her kickboxing class and writing her thesis for her PhD in physics and mathematics. Still has trouble concentrating for long periods but she is actively using her brains (I remember her NO at Hopkins saying that she had to use her brain as much as possible; she always have been a fan on the scrabble game on her phone "word with friends" and she made a point to beat everyone -except one girl who is impossible to beat:)

Her NO said that if we are still having trouble lowering the dexamethasone then he would eventually bridge her to predisone (which is a steroid but a lot less harsh).

Best,

J.

My husband is 30yrs old.  He had his first brain surgery 2 yrs ago, more like a biopsy.  He was never put on steroids, just keppra.  However, on thurs feb 28,2013 he had a second surgery to remove his oligo grade two in his right frontal lobe.  At first I thought his goofy, drunk like behavior was from the keppra, 1000 mg twice day.  All he does is sleep, which is sorta understandable to heal, but he can barely keep his eyes open, he acts really goofe, singing songs, yelling at the weatherman on tv, I have to feed him.  He's just like high.  So I got the keppra dose lowered to 500 twice a day like he took after his first surgery.  He is still acting goofy.  Could it really be he déxamethasone steroid making him act so different?  We are on a weaning process right now as well.  he will be off of it fully by march 18th.  I really hope his old personality returns!! I also hope it's not permanent because of the tumor removal.

tpalmer64 said:

Dexamethaone

I am in full agreement that you hould be weaned off this as quickly as your doc will let you. It is a crazy drug that disrupts sleep. logical thought, and can cause lots of skin issues. I weaned down to a half a pill and was off in no time, and I had 12 metastacized tumors in my brain.

Hi, I had my seizure and surgery to remove AA3 tumor on feb 21/ 22nd.  Decadron made me cuckoo for coco puffs. I'm currently weaning off of it.  Ive experienced euphoria, anger, high energy, low energy and INSOMNIA!

worst pill ever. I am on kepara too. 

palmyrafan said:

Steroid Issues
I was on Decadron 15 years ago when I had radiation therapy. I gained 60 pounds in 30 days. I had the same issues 15 years ago with the swelling, joint pain, etc. that you are experiencing and the doctors suspect that is why I had problems with it recently.

I am also experiencing some brain swelling from the tumors and my docs (PCP and Endocrinologist) decided to put me on and keep me on Prednisone instead. They said that the benefits of the drugs are similar without the same side effects. Also, the Prednisone I can taper up or down in 1/2's instead of whole amounts. With the Decadron, I also experienced the "moon" face which I do not get on the Prednisone.

Another side effect I had was the insatiable appetite. I ate everything I saw. I couldn't stop myself. I have since learned that is common on steroids and now I limit myself to what I would normally eat at each meal. For snacks in between, I eat fresh fruit or yogurt.

I too have the pain around the knee area even with the Prednisone; with the Dec it was horrendous. Motrin seemed to help somewhat although I felt like I was shoveling it in every 4-6 hours. I did read that is where the medication tends to build up; not sure why but it does especially at the joints.

Have you asked your docs if you can switch meds to something other than Dec? I can't take Xanax or anything like that due to an addictive genetic gene that runs in my family (don't drink, smoke or take anything that has a "habit" forming tendency). The other thing you might do is ask to see an Endocrinologist (if you haven't already done so) to make certain that there is nothing else going on. We found that my thyroid and adrenals were both underactive due to the radiation 15 years ago and contributed to the swelling of the brain. Just an idea.

Please keep us posted about your condition and your progress. You're in my prayers.

Hi Palm,

My girlfriend has been on steroids for almost a year. She had a benign tumor which was treated by radiation. Since then she has been taking steroids. Due to the radiation, she now has brain swelling which has caused her some mobility issues.

Her doctor told her that the swelling pushes celeberum in the brain which controls the mobility of her body. She hasn't been able to move her right leg for two weeks now, and it really frustrates her. Anxiety is also her major issue. She gets anxious because of very little things. The doctor keeps telling her to relax; however, it's very hard for her to control her anxiety.

We both are christian and believe in miracles. I saw in your post that you had a brain tumor 17 years ago. Could you let me know what type of tumor you had and how you survived it?

Thanks

dsharlee said:

risks vs benefits of steroid therapy during treatment
As a nurse for over 30 years, and now under treatment for GBM, I am very aware of the positives and negatives of steroid therapy - for whatever type of treatment, but particularly brain cancer. Yes, different people do have different side effects, including the rare case of "steroid psychosis". But for most people, dexamethasone and other types of steroids have a tremendous benefit, primarily reduction in brain swelling.

It also causes weight gain, and although it is not "addictive" it is extremely important that when discontinuing steroids, the dose be very slowly weaned down or refractive brain swelling will likely occur. If you think the side effects of steroids are bad, the effects of sudden and significant brain swelling are far worse.

Treatment and side effects with this drug should be discussed in detail with your neuro oncologist. I was able to discontinue it within a couple of months of completion of radiation therapy, but I know if I develop certain symptoms, I will probably have to re-start it.

Good luck to you all.

Debbie

dear Debbie, 

                 In response to your post "risk vs benifits of steroid therapy during treatment" I was wondering if it is abnormal have continued joint pain and sustained difficulty losing the weight post steroid treatment. When i went into hospital I was about 165 pounds and quite fit due to regular excercise and a healthy diet, and now following chemo and radiation I am trying to return to this state after having swelled to 230 pounds, but so far I am having to much pain to regularly work out even when i change the excercises to suit my new pains.

In short I was wondering if my new pains could be a result of rapid weight gain from months ago, or from the long term effects of my chemotherapy treatment, or even due to a seizure I had a short time ago In which I may of fractured a lumbar disc.

regards

Joel

jerry616 said:

dexamethasone a real problem drug

my wife was put on dexamethasone and after 4 days could not get out of bed without help and has to be aided in walking.  she was only taking 2-1mg tablets per day.  been through surgery for grade 4 gbm and had 42 days of temodar 120 mg along with radiation.  everything was fine and she felt great, but had some forgetfulness on days of the week.  had second round of temodar 250 mg for 5 days and tired but OK.  then they wanted to add the dexamethasone and she completely spent all of her time in bed in just 4 days.  I called neuro-o and they are weaning her off by reducing her to 1-tablet per day and shortly she will be off.  I have noticed a difference in just 2 days of the reduced pills.  this drug causes more problems that it helps.  wish I had read about this before we started.  jerry

            My personal story is kind of boring in the end so if you want to hear it just ask otherwise I will let you in on what I have figured out through trial and error over the past month while on the steroid dexamethasone. First off the side effect as in the hunger that comes about in individuals is a result of the fact that the steroid actually accelerates your metabolism by double in the case of me. I was prescribed 2 mg of the steroid and it doubled my metabolism. Once you take the steroid for the first time it doesn’t matter that the dosage time has ended. It still remains in your system for like in my case 4 days. Since the metabolism is boosted it naturally wants twice as many calories to one function and the other is so your body can repair itself.

            I understand that different people have different internal clocks so I can only tell you what worked for me and you can use that as a baseline for yourself. After 3 weeks if I you normally do same thing or routine it no longer shocks the nervous system and a habit is formed. So with the steroid it takes only 2 days for the same effect. I will get to how I worked around that in a bit but this is my supply list that I used while on the steroid. I first used a protein powder called Muscle Milk. It comes in different flavors if you wish but I just like Chocolate Mint. It has only 150 calories and 16 grams of protein. The shake was 16 ounces that can either be water or milk since the powder itself is lactose free. I would take a shake 2 times every 3 hours meaning I would drink a shake, eat a normal meal and hour later then drink another shake. This would satisfy the hunger feeling caused by the steroid and assist with recovery overall. The second is an acidophilus tablet. I took the tablet at scheduled intervals. It was 7:30 A.M. and P.M. as well as 3:30 A.M and P.M. This replaced the laxative the doctor prescribed that you I was to take twice daily that was unnatural. The third was a Vitamin D supplement. It was 2000 IU of the vitamin with every shake that I drank to help flush my system of the large amount of protein I was taking in. After you finish the steroid you will also need to wean off the supplements. Take it day to day and see how it goes. I started with a single acidophilus supplement at 3:30 A.M. since I began sleeping all at night again. Then when I felt right I stopped taking the Vitamin D supplement by one dosage at a time until I worked down to the 7:30 acidophilus supplement and so on. Be patient since it will take time to for your body to completely return to normal.

            So in the end through the course of taking the steroid and was off it completely my schedule was this. I would take the steroid an hour after I would normally wake up. I normally wake up around 6-6:30 A.M. depending on my children. So I would take the steroid at 7-7:30 A.M. along with the acidophilus, a multi vitamin and an anti-acid pill for the steroid.

As far as when you take the steroid depends on what the doctor prescribed for it. Follow the scheduled time frame they set for the consumption of the drug. Do not miss a dosage or you feel like crap.

I would normal be against reading about side effects for a drug but with the steroid it has its uses. Take the nausea feeling that comes around eventually. That is a tell that your body needs more sleep to recovery than what you are giving it. Sleep really is the most important part of the process since your body and since the nervous system takes 2 days to adjust you will find that the insomnia caused by the steroid will make sleep almost impossible after doing the same thing for 2 days and that causes the nausea and vomiting that may occur. The way you work around that issue is you do something different each day. From the meals that you eat to the exercise that you accomplish you need to change it every day so your body doesn’t adjust at the rapid rate it can because of the steroid. If you feel nausea you need to change part of your routine for the day again so you can sleep.

In the end there are a few things you need to understand to completely recover while on the steroid. For one the classes you took in grade school about health and physical education that you probably disregarded when you took them are very important when taking the steroid. Everything boils down to diet, exercise, stress and sleep. The diet is the easy part. Just take the shakes and eat a normal meal when you normally do. With exercises you need to push every day to accomplish a new task. Stress is managed when you do something new every day and pushing yourself with the exercise. Last but not least you not only want it but you need to sleep. If you complete the first three parts the sleep will naturally come along with it.

Do not panic when changes occur and if you have questions you should talk to the doctor. All information that I have given can be easily found doing a quick search on the internet but I am in the giving mood since its Christmas. The problem with any recovery issues are self-caused or by unwanted stress caused by an outside source such as trying to adjust after surgery with a full house on the holidays….that was fun. It will get worse before it gets better but in the end it you will recovery in half the time and feel better in a month when you take advantage of the side effect (the increased metabolism) like I did.

marcella1 said:

Do you know?

I am having same questions.

My Mother is down to 1 mg of dexamethasone a day.Usually after 2 days mom is comatose.

This is the 4th day this time and she is going to coma again.

I feel helpless. Do you know?

This is the 4th day without dexamethasone. Mom is going into coma. She feels so bad.