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dexamethasone nightmare!

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

my husband is currently coming off of the steroid dexamethasone, and it is hitting him hard! sore hips and weakness are to expected, i hear. he has both. but he is sleeping all the time now. he is having trouble with thinking and speech... i'm sure some of you have had some experience with this drug. i'm asking if anyone had a similar hard time. could you get back to where you were before, and how long did it take? i realize that everyone is different, but it would help me to know what to expect a little bit. he was doing so well. it was like we took five huge steps forward in the last few months, only to fall four huge steps behind with in a matter of days coming off of this drug! our radiation oncologist said we should "bite the bullet" and get off of it completely. which i am all for. please let me know your thoughts and experiences.
thanks.
sydney

fskcosta's picture
fskcosta
Posts: 2
Joined: Jul 2011

My husband just stopped Decadron two days ago. I'm so glad I found this site but wish I had found it months ago. My husband was so full of rage I actually contemplated Divorce for the first time since he was diagnosed in 2007. We have been through alot:

He was diagnosed with Stage 3 Esophageal Cancer 3 months after my daughter was born in 2007 at the age of 36. He went through chemo/radiation, surgery and chemo/radiation like a champ. After many clean PET/CT's we though he was almost in the clear. Then in Jan. 2010 he started having headaches. Come to find out, the brain tumor was probably there when he was origionally diagnosed but since his cancer dosn't usually met. to the brain they never looked there. He had surgery and has had 2 Gamma-Knife procedures, Whole Brain Radiation and just last month underwent Cyber-Knife. As if this was not enough, I was also diagnosed with Thyroid cancer about 8 months ago at the age of 33. I know that my hormones are completely out of whack, but because of this and him being on Decadron it has been even harder to handle. He doesn't understand why I can't handle things the way I used to and I have a hard time not taking his rage personal. I was hopeing that as soon as he stopped the Decadron the "Anger Issues, Silent Treatment and Flying off the Handle for no apparent reason" would stop, but it seems that was just wishful thinking. We argue over the smallest things. I keep telling myself it's just the meds, but he thinks it's me. I can only pray that things get better soon.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

The medical profession is just now starting to recognize a condition called "steroid psychosis" as it relates to Decadron. It is a very real condition with exactly the same symptoms you are describing (as well as myself and others) and worse symptoms. This is not to be taken lightly.

When I was on it for a short few days, it felt like eternity to my husband and myself and I was on 40 mgs a day! Luckily for me, my PCP recognized the rage in my eyes when my husband took me into see the doctor and he knew that was not the "real" me. He asked my hubby how long I had been like that and he said since the hospital put me on it. Now, I have never heard my doctor of 8 years swear before, but he did that day. He immediately withdrew me from it and put me on Prednisone. The worst symptom I have had on Prednisone is that I have gained weight.

Please remember that your husband still has the decadron in his system and it make take some time for it to be fully gone before you notice a marked improvement in his moods. Let's hope that as each day passes, that he continues to improve. I will keep you and your family in my prayers.

Teresa

knucklehead
Posts: 1
Joined: Aug 2011

From what I have read all of you have not been on Decadron very long, my husband has been on this for 2 years at 8mg per day. We are having a very hard time getting off. Sleeping, reduction in appetite, less cohesion in speech. Has anybody here been on this long?

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Some of us can't be on it due to severe side effects, but I have been told by my PCP and other specialists, that regardless of the type of steroid, Decadron or Prednisone, etc., when you get to the lower doses, that is when it can seem the hardest.

I am currently on 8 mg of Prednisone a day and my PCP told me yesterday that starting this Friday he wants me to alternate 8 mgs, 7 mgs, 8 mgs, 7 mgs., etc for 2 weeks, every other day. Then he wants me to drop to 7 mgs for 2 weeks when he will see me and have blood tests run. He said that sometimes it is easier on the patients when they can wean down like that so that your body has a good rhythym and knows what it is supposed to do.

You might try talking to his doctor about his weaning process. However, I have heard that weaning off Decadron is a lot harder than Prednisone. Not sure why, but it is.

Good luck!

Teresa

joycelutz
Posts: 1
Joined: Oct 2009

If one is currently on decadron can they be switched to prednisone w/o any problems? My daughter has been on decadron for a year now and was on 3 mg a day until just recently when she went to the er for problems and they gave her 40 mg via injection and put her up to 8 mg a day. She is now down to 6 mg a day and trying to wean further. She has many side affects from this awful drug and I'm wondering if switching to pred. would help? Any ideas appreciated!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

they can switch we did with no problem. My sister was on decadron for 5 months.Weened off down to 2 mg every other day then off. She has bone necrosis from it, not a good thing...

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I had steroid psychosis on Decadron and was pulled from it and switched immediately to Prednisone. I was on 40 mgs of Dec and switched to 30 of Prednisone without any problems. I have been on Prednisone since February of this year and am being weaned down to a mainenance level of 7 mgs per day which I start tomorrow.

The side effects are different for different people. As I am weaning down on the lower doses, I find I have occasional problems with headaches. But I have been told this is not unheard of. I have also found that by eating 5 or 6 small meals a day instead of 3 that my blood sugar levels are steady and I don't have the constant feeling of having to fill a "hole" in my stomach.

I was taking Prednisone in the a.m. and p.m. and the p.m. dose caused insomnia. So I started taking my p.m. dose at noon with lunch and the insomnia stopped.

I hope she does well and I would encourage her to get off of Decadron. They should take that drug off the market.

Teresa

RAB73
Posts: 27
Joined: Oct 2011

Hi,
I'm from the Lymphoma forum, but found this post while doing a search for decadron. My partner gets decadron (not sure how much) every two weeks with his chemo threatments, which started in June 2011. At first he was fine, but about a month ago, he occaisionally would get so angry with me and fly off the handle over the smallest things (small to me, at least). Does anyone know if the effects from decadron are cumulative? He is angry with me now (and only me - he is fine with most other people) and after a couple of blow-ups this past weekend, is giving me the silent treatment. He only has two more chemo treatments to go, but I may have to call his oncologist to let her know and maybe have her recommend either counseling or something else. I don't know if my partner will listen to me at this point if I bring it up.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I would be tempted to say this sounds like the Decadron. However, again, you haven't mentioned the dosage of the medication, etc. so it could just be his frustration levels with the entire process. I was on it for 2 days and I became intolerable to everyone around me; husband, friends, doctors, nurses, etc. That is how quickly it became absorbed in my body.

I am not a doctor so I can't say that counseling won't work, but it sure sounds like the medication to me. I would speak to the oncologist before the next treatment and voice your concerns about what you see happening to your partner when taking the Dec and/or undergoing the chemo. She will know better than anyone what to do for him.

Good luck and keep us posted!

Hugs,
Teresa

dube03
Posts: 3
Joined: Aug 2011

My mother had surgery and radiation for brain tumor GBM in January - April 2011. She started on 8 mg of Dex per day and has been gradually reducing the dosage down to 2.5 mg / day by last week. She then developed an occurance that may be related to the steroid but I'm not sure. After sitting for an extended period of more than 20 min, when she gets up she encounters having dizziness and weak legs to the point where she can't stand. This is often followed by blurriness in one eye (or blind spots). The whole episode only lasts a few minutes, but the frequency has increased to the point where it was happening 6 times a day. We decided to increase her dose back to 4 mg/day eventhough we'd love to get her off Dex. Since increasing the dose she seems confused more often than usual now too. I'm wondering if her symptoms are related to Dex, or if it is brain swelling. Her last 3 MRI's are showing no signs of increased tumor growth. If anyone has any experience here it would be appreciated.
Greg.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

my sister had weakness unable to get out of the chair one day, doctor told her to go back on decadron. Then she started to have really bad leg pain. The decadron caused bone nicrosis. in the top of her femor bone. She was having some nausea during that week too. Hope your mom is ok. Decadron can cause a lot of problems

dube03
Posts: 3
Joined: Aug 2011

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

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Yes its the same drug.

vicky1967
Posts: 1
Joined: Oct 2011

They put me on Dexamethasone after my surgery in January and I was on them thru end of March. I could sleep for a month, maybe 1 hour a week and I kept telling my doc I was going crazy. my family kept taking to the hospital with no help. My doc tried xaxans, ambien and risperdal no help. After 3 trips to the same hopsital and One Court order from my family having me mental evaluation at Mountain Lakes they could help and sent me home. I got a freind to take to me the next day to Huntsville the next town over and went to the sic ward in the ER eremecry room and in 18 hours she made get sleep and 8 hours and watch me and sent me home it Ativan 1mg. She I had put altered metal status, paranoia, and insonmia.

I went home and slept 2 days and return to my old self.

goa19
Posts: 1
Joined: Jan 2012

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.

connsteele
Posts: 232
Joined: May 2011

When our son was on radiation, he got so bad that he was put on 24 mg of Decadron. A huge dose for a small guy. The docs did it because they were concerned that his rapid decline on radiation might be due to tumor progression and not swelling caused by the radiation. He did improve some, enough to get him through the treatments. After stopping radiation, he was gradually weaned off over the next six weeks. Thank goodness. He never complained of the symptoms your mother is having as his dose was being decreased, and once finished. But then everyone is different. It never hurts to contact your doctor about your concerns. Good luck. Connie

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

When I was given Decadron, I would sleep maybe 30 minutes a day for the first 6 weeks I was on it. It got to a point that I felt like I was going to finally go to sleep, so I would lay my head back. When I woke up it felt like I had slept hours, but I had only had my eyes closed 30 seconds to a minute tops. My Dad and Husband would laugh at me because I would insist that I was asleep longer than that. When I finally started being weaned from it, I crashed due to complete exhaustion. I remember sitting up ALL NIGHT LONG trying to read a book, watch TV, and that is how I found this site. I could not stay focused on any one thing for very long, and I would forget really easy what I was doing. I too ate us out of house and home. I too am a small Woman, and went from a size 5 to a size 9 in jeans during the time I was on the meds. I gained about 50 pounds, and felt like a body builder when I walked because there was so much fluid in my arms they would not go down completely by my sides. My NO started weaning me off of the steroids to fast, and it caused me to start having seizures. I had over 20 seizures everyday for 6 days until my husband kept insisting that he thought it was because they started weaning me off the steroids to fast. They finally decided to increase the steroids again, and what do you know, the seizures stopped. That is another thing to keep in mind, and was in another post a lot of us were discussing. Sometimes the Caregivers know that something is not right because they are there the majority of the time. Don’t be afraid to discuss anything with the Dr. The thing I dread the most IF my tumor comes back is the Decadron! It did make me feel high on life, and I was the most positive person ever, but when they started weaning me to fast, I had a tantrum in the truck while my Husband was driving down the road with my Daddy in the backseat. I could have caused him to kill us all. I have NEVER thrown a tantrum in my life much less at the age of 33! When we got back to the Hotel, I locked myself in the bathroom. I said some mean things to both my Husband and my Father whom has always been the two Best Things that ever happened to me. It is a nasty drug, and I was so thankful when they finally weaned me off of it in a very slow manner.

Prayers Always,

Michelle
Mobile, Al

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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's picture
I_Promise
Posts: 210
Joined: Aug 2011

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.

Dhiana
Posts: 1
Joined: Mar 2012

My mom just came back from the hospital yesterday, and she is going to start using the drug. She was in the hospital because her tumor has grown larger, and surgery isn't even an option because she's had surgery twice in the same area before. I didn't know where else to go to discuss this and I found this place. Does anyone know effective it is? And how it might help? The past week has been really hectic I could really use some good news. My mom literally can't do anything at the moment, she spends most of her time in bed. Any information will be greatly appreciated!

tlccbk1
Posts: 1
Joined: Aug 2012

first i have never used a member thing like this. i would apprecitae any help anyone has. Here is my story.
I am 28 years old, i woke up one day and couldnt move my neck or my head. Ended up ER they said it was mussle related. After seeing nemouros doctors for a month fighting with them because they wanted to just push the pain pills and muscle relaxers my primary doctor did an MRI. Well thankfully he did or i would have been paraylized in about 10 years. i have syringobolia and syringomila. anyways july 27 2012, i had brain and cervical spine surgery. weighing 98 pounds.(normal for me)got discharged from hospital in 4 days, with 5 meds. The main med was DEXAMETHASONE 2MG TAB. the lable and info sheet said take 2 po Q8 hrs for 6 days than 1 1/2 Q 8hrs for 6 days thann 1 Q 8hrs 6 days than 1/2 daily 6 days.
After the first day of it i started eating so much which was great becasue i could put on some weight. well that week ii gained 6 pounds. cool. now it was time to decrease to 1 1/2. i started having joint pain in my knees and ankles. hurt bad but doctor told me to take pain pill it will be ok. day 2 of 1 1/2 i could not get out of bed. it felt as though someone was stabing me to death in my joints and i was screaming i couldnt do anything. the eating has continued, i was gaining more weight. after 3 trips to hospital and doctors and pain pills, luckily my follow up apt same day i couldnt move and had to be carried to car. docotor said we need to start this over again and try tapering it differently. so than we start that day at doctors 8 mg of this med. than 4 mg q8hrs for 6 DOSES, than 3 FOR 6 DOSES, THAN 2MG q8hrs for 6 DOSES, well my body did not make it that far. when we got down to 3, at this point i look 6 months pregnate gained 20-25 pounds. one day i cant move screaming of joint paine and cant lift my legs or arms get out of bed. again trip to different hospital, they could not believe what happen. he called my surgon to see what was going on. the surgon said the first script was supposed to be for DOSES NOT DAYS! so bascially the first bottle i got an extra 18 doses of this pointent steriod. that they cant just take me off because of the side effects it is causing me. so this past tuesday we figure all this out.and again i now have to start all over again trying to taperr it a different way. in the mean time we went and got a copy of the original scritp to see what it really said. Sure enough doses not days meaning the pharmacy screwed up and now i am suffering with all these abnormal side effects getting bigger and bigger,the sweating, echoing in my head if to many people are talking, i sleep maybe 2 hours and i am wide awake. i never know if i am going to wake up in pain or not. yeasterday i woke up felt ok this am horrible. i am supposed to go back to work, now i cant all because of a med that got screwed up, all the new med bills now, and not knowing if i am going to be able to get out of bed. scary. another side effect which the doctor cant understand yet i got a call from the nurse at 10:30 PM scarfed becasue the lab called her that late and my blood surger was read at 27! they cant figure it out. my white blood count cell upo in 30,000. i cant stop eating, my body feels horrible, i can feel my skin streching every hour, i am so swollen exp at night i cant bend my legs to get up stairs normal. i am now on an antibiotic because my immune system is down so low becausae of these. the doctor said only thing we can do is keep trying to do different tapers with antibiotic and pain med and hope we can get the right dosage.

So here i went in for a major surgery which they said i be laid up for aout 6 weeks, and i was up in 2, and i am having all these issues because of a mis reading by a pharmacy. now have to worrie about diabeties, teeth decay, and much more possible effects down the road from this med. sorry about all my rambiling i am just so confused and scared of more effects and just woundering hummm can i lift my leg in the morning~

my prays are with anyone that has to go though this med and i hope for a great outcome for you. just please double check you ottle with the script the doctor calls in!

Encky
Posts: 3
Joined: May 2013

I'm new to the site but have been reading quite a few of the posts for a few days.  My 51 year old wife was diagnosed with Stage III Melanoma on the upper part of her back just under 6 years ago.  The doctor had found a few cancer cells in an "in transit" lymph node on her back but after consultations with our oncologist and the ones at MD Anderson, it was decided that the best course would be to monitor.  She underwent CT scans of her chest and abdomen and an MRI of her brain every 6 months for 5 years and they all came back negative.  Her last set was in August 2012 and everything was clear.  In April 2013, she began to have headaches and throwing up some so the doctor had us go to the ER where they did an MRI of the brain and the results came back showing 10 lesions on her brain.  The biggist being 4 centimeters.   there was also a 7 millimeter lesion found on her brain stem.  The others were smaller but were spread thourghout her brain.  They doctors told us that the melanoma had come back and had metastasized to the brain.  Because of the number of lesions, surgery was ruled out by our neurosurgeon.  They started her on 12mg of decadron to help reduce the swelling and then our radiology oncologist and oncologist determined that whole brain radiation along with 140mg oral Temodar would the right course of action. She completed the 10 days of radiation.  After the radiation was over, the doctors said that they wanted to wean her off the decadron so they reduced her to 6 mgs a day.  They also had her stop the chemo for three weeks in order for her body to heal a little before undergoing 250mgs of Temodar for 5 days and then off for 23 days for the next 6 months.  A few days after she started weaning off the decadron, she started to have headaches when she would stand up.  They would go away when she sat down.  After a few days of this, we went back into the ER and they did another MRI and found that the tumors were unchanged, but there was a lot of edema.  Our radiology oncologist says that this is normal and would not expect to tell whether the tumors had been shrunk this close to the radiation.  This was about 2 weeks from when we stopped the radiation.  The doctor increased her dose of decadron to 14mgs a day.  After this, she has developed an extreme case of photophobia that would cause a headache.  I got her a mask to keep the light out of her eyes and she also wears sunglasses.  This has started to get a little better the last couple of days.  She also has started to become shakey when she walks and her legs give out on her sometimes.  We have concluded the first round of chemo (5days on 23 days off) and will be starting the next round soon.  We have another MRI scheduled for the end of July so we are praying for the best possible outcome.   Has anyone else had similar effects from the decadron and if so, do the symptoms subside? After discussing with our our oncologist, I have started to wean her off the decadron very slowly.  I am hopefull this will work. 

hperkns26
Posts: 1
Joined: Mar 2013

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
Posts: 2
Joined: Mar 2013

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.

Allypally1976's picture
Allypally1976
Posts: 1
Joined: Mar 2013

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. 

 

jerry616
Posts: 7
Joined: May 2013

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

wdavis1982
Posts: 1
Joined: Dec 2013

            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
Posts: 4
Joined: Dec 2013

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?

marcella1
Posts: 4
Joined: Dec 2013

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

LLT
Posts: 1
Joined: Feb 2014

My husband was diagnosised with metastatic prostate cancer on Jan 3 of this year; was told it could be managed with daily pill (casodex), monthly shot of edge a and second shot of lupron every 2-3 months.  Told he could live a long, long life with prostate cancer - manage it not cure it much like living withdiabetes.

 

On Jan 13, he was admitted to the hospcause for numbing in his feet and a mass was found between t7 and 8 which he received 10 radiation treatments.   He was placed on dexamethasome 4mg, 4 times daily to keep the tumor from swelling . His hospital stay was from jan 13- 16, having his 1st two radiation treatments while in hospital.

 

About the jan 22, his legs began to weaken, by jan 30 he was totally immobile with excruciating pain and rehospitalized on jan 31.   We were given no answer as to why this happened.   He has slowly been weened off the steroid, currently at .5mg 2x daily and should be off by the end of week.   He makes improvements everyday with his pain management and mobility but now has developed oral thruster, has a limited appetite, steroid induced diabetes, forgoetfulness, fatigue etc etc etc

 

Seems like we take 1 step forward and 5 back.  I'm a nervous wreck, cause we get no answers on if this is normal, are all these negative effects from the steroids or is the cancer progressing or what....doctors continue to chase symptom with pills, then another reaction happens which they give another pill.  I don't know which way to turn to get him help or tell him hang it there, it'll pass...has anyone experienced this and have suggestions? 

 

Please Let me know your thoughts.  Thank you a thousand times.

Phyllis318
Posts: 1
Joined: Feb 2014

Hi,

 

Last fall I was able to come off dexamethosone after being treated with it for brain edema.  The trick to coming off without side effects is to gradually (this is the key word) decrease your dose according to your doctor's advisement.  If you decrease your dosage daily, this could be the cause of your problems.

 

First speak with your oncologist, NOT the radiation specialist.  Indicate the symptoms you are having and ask for a solution.  Every patient should be able to get off steroid therapy and most do it without complications.  Sometimes it takes weeks which was my case.

 

Most importantly use your oncologist or nurse navigator to answer these questions specifically for your case and dosage requirements.  Getting off steroids is one of the first steps to feeling better.  Doses must always be carefully tapered according to your doctor's recommendation.

 

 

 

 

 

 

mq316mq316
Posts: 14
Joined: Jun 2014

I was complaining day one as they put he emend/ zofran/ dexamethazone  IV combo in  prior to first chemo of sleepy loopy feeling from that ... they said couldnt be .. so I said ok.... but then  then next day I was red cheek and flush  and headache bad ( zofran? ) like vice grip.... but took the streoid 2 @4mg as ordered since they said they were needed to work ........ got really fast heart beat more flush but so so tired and just slept on and off all day ... called nurse later she said couldnt be the steroids they make ya speedy so any concerns hit ER...  by 930 breakthur nausea... was told take compozine 10 mg tab .... too at 939 felt dizzy weak and woke head lolled off couch water spilled at 1 am called parents .... think it dropped BP and I passed out..... next AM  was told stick to steroids.... so took two and again dizzy loopy tired fast heart ... went ot ER later was told well it happens ... good luck ... I wanna cry so nauseous and nurse in chemo office not helpful  anyone else ??

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