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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

sue Siwek
Posts: 281
Joined: Jun 2009

talk to the dr. my husband became addicted to his steroid. some people need to be gradually weened off of them.

pamstjohn
Posts: 3
Joined: Jan 2010

my husbands legs and arms are so weak from the steroids and he cannot think straight, he forgets everything. he has atrophy in his leg and arm muscles.it is a nightmare. they can't seem to decide if he needs more or less. they say he needs more because of the swelling in his brain but the steroids are killing him. he feels so helpless. he can't do anything for himself. he can't get up and down, has to use a walker. it is devastating to me have to see him like this and I have no help with him. So I know exactly what you are talking about. what can we do???

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

luke has the atrophied left arm and leg as well. we're hoping, hoping, hoping it will come back completely. we are weening off of dex over the next three weeks. he does seem a little stronger today. but his hip and knee are killing him! all of this has taken away so much of his freedom. i understand how frustrated you are, pamstjohn. all is not lost, though. we made some progress before the drug changes. it is just going to take a long time... did your husband have surgery? if so, how long ago? 4mg 3xs daily helped luke with his weakness after surgery, but as i have said, it's the coming off that is so hard. one more week. one more step down... then we're going to try to work our way back up.

Dante
Posts: 9
Joined: Jan 2010

We just started to weening process. He was weak on his right side becasue of the brain tumor so I don't know if the weakness is coming off the steroid or the brain tumor. Good to know about potential problems though. We are weening off much slower though. I wonder if that will make a difference?

Dante

ShowMeFellow
Posts: 18
Joined: Jan 2010

I'm currently near the end of dex withdrawal. (I'm 66 y/o,... 5'6" and 155#,... had been on 4mg once daily since April 26, 2009 -- four days before brain surgery: craniotomy, recision, biopsy -- double dosing during Chemo Weeks 5/23). Med Oncologist cut me back to 2mg in November, then to 1mg early January, still doubling down during Chemo Week. Will probably d/c altogether when I see him again early March.
Have experienced some increased clumsiness in right leg, some tremors in right hand (w/ left front site) against which neurologist suggested treadmill (20 minutes, 2 mph, four or five days a week,... and handwriting drills (penmanship is about equal to 8 y/o grandson, w/ whom I am now a regular correspondent!).
Good luck: every day's an adventure of discovery in Cancervivorville!

bmanzer
Posts: 2
Joined: Jan 2010

My husband is a 26-month glioblastoma survivor. After surgery, he was put on dexamethasone
probably like everyone else with this. This drug made him absolutely crazy! He acted like he'd been smoking crack. He was totally unreasonable, was extremely mean, and so hyper I could hardly believe he'd had major brain surgery. He had a hard time getting off of it, although he did get off of it before he'd even completed radiation. And talk about appetite! He gained
twenty pounds in 1 month. When getting off he experienced exruciating joint pain, and could
hardly get out of bed in the mornings. After getting off ,this all resolved after probably about a week. One thing to be aware of (which we weren't--Dr.'s never tell you the whole story),and I don't want to scare anyone (as if this whole thing isn't terrifying enough), but my husband developed avascular necrosis (AVN) in both of his hips, caused by the massive doses of steroids after surgery. This happened a little over a year after his brain surgery.
He had to have core decompression (titanium rods inserted in both hips) surgery, and this has caused him more problems than the brain tumor. I would advise to anyone to get off the steroids as soon as possible, and to be very aware of any joint pain that might come about in the future!

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I can't even report here what this drug in high doses did to my husband. Let me just say it was a nightmare. No thanks to the neurosurgeon, who did the biopsy and put him on it for brain swelling, for not telling us the potential "crazy" effects of this drug! His initial behavior was goofy, and it actually made us find it funny. That didn't last long before I realized it was something more serious than his coping mechanism with the diagnosis. Fortunately, our insurance company's wonderful cancer nurse told me about "Decadron Psychosis" and how real and serious it was. I started researching online and realized what was transpiring - quickly. Oh, that time was a nightmare (trust me), and he was hospitalized for a couple of days. Things got completely under control when we got him weaned off the large doses.

He is now on just 2mg daily, but I am hoping we can reduce that down to 1mg or less. He got weaned off completely (gradually) after his initial 33 radiation treatments and 44 days of chemo, but about a week after he was off, his slight double vision returned, so they quickly got him back on the 2mg. Even on this, I can see a very slight personality change, which I did not see at the lowest dose of 1 to 1/2 mg, but I don't want him to exhibit phsyical symptoms of the tumors, if possible.

I was so upset after his initial pyschotic period, because his doctor had NOT informed us of the possibility, and real harm could have ensued. I could write a book, but I have just tried to forge ahead and not look back.

dsharlee
Posts: 11
Joined: Dec 2009

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

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

but thank you, debbie. it is so nice to hear a professional opinion in all our mania. (i have it the worst) but, man, steroids are serious business when it goes wrong. for all out there, my husband has improved since my original post. though, he still has joint pain in his knees. we're hoping that it will pass too.
with all the benefits that steroids provided, i still hope that we never have to deal with them again.

John_32's picture
John_32
Posts: 71
Joined: May 2010

My wife began evidencing periods of psychotic rage after she was put on this drug to the point of verbal abuse, physical violence, and ultimately even throwing me out of our apartment. While we were apart she accepted a job offer in Europe and got on a transatlantic flight to London days after being diagnosed with multiple lesions in her brain, foregoing the brain radiation that had been scheduled for her, and meanwhile popping six 4mg tablets of this drug daily. The doctors never apprised us of the powerful side effects this drug can have, and for awhile I didn't know if her bizarre behavior was a result of the stress of the grim prognosis she was given, the lesions actually affecting her personality, or the steroids, but it seems that others have noticed personality changes coming on or off of this drug. Fortunately, she realized reckless her actions had been and survived the return trip back across the Atlantic to get immediate brain radiation. By next week she will be fully weaned off the drug, thank God.

chusband
Posts: 1
Joined: Aug 2011

Here are some stats about incidence (from: Psychiatric Adverse Drug Reactions: Steroid Psychosis, RC Hall - Clin Advances Treatm Psychiatr Disord, 1991): "The incidence of steroid psychosis varies widely in the literature ranging from 13 to 62%, with a weighted average of 27.6% for some steroid induced mental change, the vast majority of which are mild to moderate and do not herald the development of a full-blown psychosis or affective syndrome. The incidence of a severe psychiatric syndrome in the more than 2,500 patients reported in the literature ranges from 1.6 to 50% with a weighted average of 5.7%."

A lot more can be found via http://scholar.google.com/

So not quite that rare! And it is a scandal that prescribing physicians do not inform their patients and loved ones better! Even conditions that do not reach the severity of actual psychosis can dangerously interfere with care. And I know, because my wife -- who has developed severe maniac hostility after 10 days on 12 mg of Dex -- aggressively rejects my care.

joel91
Posts: 1
Joined: Sep 2013

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

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

My doctors prescribed me steroids to control the swelling of my brain from my plasmacytoma which made an intracranial extension, that damn drug caused a crapload of problems, my hands trembled, I had atrophy, muscle weakness, my knees and ankles got swollen and were so painful that one time I requested for a wheelchair to take me to the radiotherapy room, My immune system got so weak that I had skin staph infection, rashes and fungus infections on my tongue.

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

Hi, Rory.

I don't know if this just happened to you or if this happened a while ago.

David had a similar incident when he was doing radiation. He had to take steroids after the brain surgery and during radiation. Without any warning, he had severe pains in his knee. He couldn't get to the bathroom or even walk. I had to bend at the waist and let him drape himself over my back and half-carry him to the car to get him to the hospital. Our radiologist had us go to the emergency room, and she met us there. They ran some random tests but none of us remember what those tests were for. It was like scarlett fever or typhoid or something strange. They finally ended up saying that they had no idea what was causing that pain. I suspected it was the steroids and now that I read how it affected you, I'm sure it was the steroids.

I really hope that you are feeling better. One good thing about the steroids--once David quit taking them, he recovered rapidly. He lost all the steroid weight and all the other problems went away too. He doesn't have any long term side effects from steroid use.

Blessings and peace to you,
Cindy

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

I finished my treatment about 2 weeks ago. I underwent 3 weeks of 3d-conformal radiotherapy to my paranasal region, the doctors prescribed 3 tablets for the first week, 2 tablets for the second week and 1 tablet for the final week. The swollen knees and ankles appeared at the first week of my steroid regiment, my knees and ankles were swollen and they we're painful, I felt like crawling down the stairs of apartment and I even requested for a wheelchair to take me to the RT room. But the swelling disappeared after my doctors tapered my daily dose of steroids but im still trying to avoid foods that contain uric acid because I notice that every time I eat foods that contain uric acid the back of my knees are swelling. The only favorable side-effect of steroids is it made me very hungry most of the time :D

I guess Im having a lot of steroid side-effects since I have been on this drug for almost 2 months (started last december)

evon
Posts: 24
Joined: Jan 2011

My fiance has been on this horrific medication since January 3,2011.He is hardly the man I once knew.The anger rages are very scary!He,s 3 times my size and never did I think I would fear him.Never did anyone warn me of what could happen while on or weaning him from this.At one point(after surgery)he was on 6mg 4x a day!Now 3 weeks later 2mg twice a day.I give him zanex at the same time wich helps a little.He has little use of his right side but Im pretty sure thats from the surgery(removed 75%)His right foot and calf are 10x his normal size.The swelling is very painful.He just started chemo and radiation Monday.(temador 160mg)Can anyone tell me what else I can expect?

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

steroids can cause steroid rashes but will eventually disappear after weaning off steroids, for my case, Im starting to have a cataract from the steroids, Im having a hard time seeing under bright lights (glare issues), and I can barely read small texts because of the blurring.

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

As noted in these posts, I too experienced steroid pyschosis while on this medication and I wasn't on it that long before my family physician recognized the symptoms and put me on prednisone instead. I became enraged over the slightest infraction, including my husband not smiling when he was talking to me.....

Every thing that was said or done set me off. I was always angry, screaming, and at one point I became suicidal to the point I asked my husband to hide the butcher block of knives because I didn't trust myself. My mood swings were horrendous and while on it at the hospital I was labeled as "difficult". Gee...ya think!?

I also was not told that a person should be weaned off the medication; and I was only sent home with 2 days worth of meds and had nothing for 4 days before I was re-admitted to the hospital due to "withdrawal" where they immediatley put me back on it for another 4 days in the hospital even though we told them I couldn't take it. Upon my release, I was a hellion and it was 2 days before I was able to be seen by my PCP. He was furious!!!! Wrong medication and wrong dose. He said that the dex was the wrong type for me, wrong dose and he even changed the synthroid levels (underactive thyroid due to radiation treatment 15 years ago) as they were also too high.

I am now seeing an endocrinologist who, along with my PCP, has me on the right meds and correct doses. Both agree that the docs at the hospital did not fully disclose the side effects and/or listen to me when I said I couldn't take it. If they had bothered to listen to me the first time, I would not have had to be re-admitted to the hospital for yet another round and a trip to the endo.

Bad news....bad drugs.....steroid pyschosis is very real, very dangerous and it needs to be addressed in the medical community.

Hope456
Posts: 9
Joined: Mar 2011

I too have had issues on this med. I am having the same symptoms (mood swings, swelling, joint pain). I can tell you that adding xanax has helped tremendously. That was a really hard decision for me. I'm a christian and consider myself to be pretty strong, so I felt I was coping pretty well; however, this drug makes it difficult to cope. I also try to avoid foods high in uric acid, which has reduced the joint paint in knees and ankles at night (the pain was excruciating and it was similar to gout pain is why I laid off the uric acid foods). The worst symptom for me has been swelling. I look like I've been put into a fat suit. Before his happened, I was an average 132 lb size 8 woman. Now, I'm a blown up (literally look blown up) 155 lb. woman. My skin on my face and torso is stretched so tight it hurts. All that said, I know I have to be on it because of the swelling in my brain - more dangerous than the side effects. Water pill did not help. Anyone try anything else? I also have diminished capacity on my left side, but it's not the steroids, I had that when I was diagnosed. That's just the tumors I think.

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

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.

Hope456
Posts: 9
Joined: Mar 2011

They weaned me off this past week. I think they decided it was doing more harm than good. How long does it take for the moon face, etc. stuff to go away when you get off of them? It doesn't appear to be going anywhere fast.

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

It probably has a lot to do with how long you were on the medication, the dosage, your metabolism, etc.

I know that the first time I took it 15 years ago, as soon as I stopped taking the meds, the swelling (moon face) started to disappear. It took a few weeks for the full effect to vanish.

atomia
Posts: 1
Joined: Apr 2011

i just need an opinion, because i am really confuse. My mother had a brain surgery for the removal of parasagital meningioma. It was last September, 2010. She is now living normally except for the pains and swelling on all of her joints. She is not taking the dexamethasone anymore..the doctor advised to stop it after the once a day dosage for one month. What shall we do? What type of doctor shall we consult? She's really having so much pains. any suggestion please? are these pains and swellings curable?

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

I have multiple meningiomas: skull base, left optic nerve, optic nerve chiasm, carotid artery, left eustacian tube, 2 of the 4 sinuses, amonth other places.

As for the joint pain and the dec, it depends on the dosage of the decadron your mother was taking. How high was it? It has only been 8 months since her surgery and I have heard it is not uncommon for the full effects of decadron to take a while to wear off.

As for who to see, I would start with her private family physician. My doctor has me get a bone density scan every 3 months to keep an eye on my joints and bones. He is concerned about them becoming brittle and even though I am now on Prednisone, he is still concerned about it. He said that I may need to go on Fosamax (sp?) in the future to counter the effects of both the Dec and the Prednisone.

If the bone density scan comes back negative, I would see an arthritis specialist to see what her options are. I have seen advertisements for different medications for RA and for Osteo-Arthritis but the doctor is better able to help.

Regardless, there is no need for your mother to have continual residual pain if there is medical help / medication available to assist her.

Good luck to you and your mother. I hope she finds the relief she needs and soon!

God's Blessings.

Teresa

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

I took my last dose this past Thurs. I have been taking it since Jan when I was diag with a GBM grade 4 I felt on top of the world the entire tine I was in this med UNTIL I started the weaning process. As I said, I took my last pill on Thurs, by Sat I couldn't get out of bed. Everything I tried to do was a huge chore. Today, Sunday I am not in bed all day but am still so very tired and zero ambition. Is this normal? I think I am going to call the Docs in the AM,I am so frustrated! I literally slept about 20 hrs yesterday and today I am forcing myself to stay out of bed. Also I have ZERO appetite! I ate so well while on this and have managed a bowl of cereal in the last 2 days.

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

Tammy,

I would contact your doctor tomorrow to see what they say. I have heard others have the same symptoms you do when stopping the Dec; however, I don't know if that is considered normal.

As for the sleeping 20 hours, it could be because your body is trying to adjust to no new Dec in your system. Your body has gone through so many changes and it is trying to tell you that it just needs some rest. As for the not eating, Dec is known to cause people to want to eat, a lot. Again, your body is trying to adjust to the changes that are going on.

I hope your doctor has some answers for you. Please let us know what happens after yout alk to them.

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

I was wondering how you were doing with is all? My sister was dx in Feb. just trying to find people that are in the same stage of this thing. We have 6 more radiation treatments and the platlets drop so they made her stop the temador for now. Im really scared...

Hopping
Posts: 1
Joined: May 2013

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

mbourque
Posts: 1
Joined: May 2013

I am a new coomer to the wonderful world of Dex, I had many side effects while taking it for brain swelling, but the worst came after I tappered to zero. I began having severe fatigue and very severe joint pain. Did you have side effects afterwards? if yes, did they eventually goin away? I have been completely off this monster of a drug since Feb 13th.

johngiustino
Posts: 26
Joined: Apr 2011

After a diagnosis of GBM and neurosurgery, I was put on both Keppra and dexamethasone. The dexamethasone made me very on-edge and angry. I would push my wife and get too angry at my kids. I also could not control my appetite - I was vegetarian and started craving meat and eating 4-5 meals per day. While I am convinced the drug was necessary initially, stay on top of your oncologist/neurosurgeon to ween you off of any drugs you don't need anymore. I did and after a MRI I inquired about the need to stay on dexamethasone. Both doctors agreed I did not need it anymore (the swelling was significantly reduced) and I was given a rather complex regime to ween myself off it it. Even after stopping the medication it took a couple of months to get a normal appetite back and for the swelling in my face and hands to disappear. I do wonder though if I had not brought it up to my doctor, how much longer I would have been on the steroids, perhaps un-necessarily. While I know this thread is not about Keppra, I also had to consult with neurologist to get off this drug as well. Make sure that you question the need for the medications you are prescribed. Sometimes the doctor is on auto-pilot and you need to be an alert co-pilot. In the end I did feel much better after taking so many less meds.

Good luck,
JG

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

I can relate to what you are saying.

I was put on it un-necessarily when I made a trip to the ER due to dehydration in January. All the ER doctor had to hear was that I have brain tumors and he immediately put me on Dec for "brain swelling". I was put on 40 mgs a day.

I became the screeming banshee from hell. I constantly flew into a rage (was in the hospital for 5 days) and screamed at anyone who dared to enter my room. They released me after 5 days and gave me enough Dec for 3 days. During that time, I asked my husband to hide the butcher block because I became fascinated with it. I ate everything in sight and was constantly hungry. I felt like a huge hole had invaded my stomach and all I could do was fill it.

After 3 days, I crashed and burned and ended up back in the hospital for another 4 days. I convinced the doctors to start running tests and they discovered that my adrenals and thyroid were out of whack. They wanted to put me back on Decadron and I threatened the doctor and hospital with a lawsuit if they tried. They instead put me on Prednisone. I have since been told that Prednisone is the drug of choice for women because it is more manageable, it is available in 5 mgs instead of 10 and it is easier to wean off of.

I have since been referred to an Endocrinologist who says that at most, I need 7.5-10 mgs a day, not 40. We are in the process of weaning me down on the Prednisone.

I have never heard any patient say anything good about Decadron. And yet, that seems to be drug of choice for doctors. You'd think they would start listening to their patients when they talk about the side-effects and how horrible they are.

siurzua
Posts: 4
Joined: Apr 2011

He was first diagnosed Aug 20th 2010 and its on a 3 times a day dose, when they tried to take him off it was a nightmare and the headaches came back for him,,,,, No luck there

siurzua
Posts: 4
Joined: Apr 2011

He was first diagnosed Aug 20th 2010 and its on a 3 times a day dose, when they tried to take him off it was a nightmare and the headaches came back for him,,,,, No luck there

lkishbach
Posts: 7
Joined: Apr 2011

I am being weaned off this horrific drug now. Down to 1 mg 4x day, gradually reduced from 4 mg 4x day for the last 4 weeks prior to surgery to remove metastatic brain tumor. Every day I pray for some small sign that the weaning is helping, that there is a little piece of me coming back. Yesterday I felt better, today is bad. I shake, I am so weak, my vision is completely blurry, my ears block up, thankfully I don't have the joint/hip pain that so many others seem to experience. And the mouth thing. Dear God. My mouth is full of ulcers, tastes like wet cardboard constantly, hurts like hell. And there is no sleep no matter what I do or take. I doze off for about 15 minutes then I am awake for a couple hours. No wonder it makes people psychotic, and those were the words my oncologist actually said to me - that drug makes people psychotic - he did not prescribe it but the neurosurgeon. I know I needed to take it for brain swelling, so it seems I should be able to put up with some side effects since I am alive, but I will never take it again, I don't care what. Thank you all for these posts, it is very reassuring to me. I have been thinking, is this as good as I am going to feel from now on? I see that it is probably not, that there is hope of returning to a more normal me after this drug is out of my system.

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

Kish,

Oh sweetheart, I know exactly where you are coming from.

As to the mouth ulcers. Are you taking anything for them? I was given Nystatin (I think that's the name of it) in the hospital and it was liquid form. Here at home it was a large tablet you put under your tongue and let dissolve. It keeps the thrush and mouth ulcers at bay.

As for the pyschosis? It's called Decadron Psychosis or Steroid Psychosis and no you aren't imagining it. It is a very real condition that some doctors dont' want to ackowledge. Talk to your doctor about switching you to something else; even Prednisone. You can come down (wean) in smaller steps where it is easier for you.

The insomnia was also bad for me. I slept 4 hours at a time and would wake up. Prednisone can cause that too, but my doctors let me take an early morning dose and my last dose at lunchtime so it doesn't interfere with sleeping. Many on Prednisone have done this and can attest that it does seem to help.

Vision and hearing loss are also common. I even have that on the Prednisone where I won't be able to hear anything for a couple of weeks and then I can hear for a couple of weeks. The doctors aren't real sure why. We went on-line and found something called "TV Ears" that people use to individually control the volume on the tv. We bought the Professional version which includes a microphone you attach to your belt so you can hear people talking.

Please do not sit and suffer silently. Talk to your family doctor, neurosurgeon or neurologist to see if you can find some relief. I am in complete agreement with you and feel that Decadron should be taken off the market. The drug is volatile and actually had me considering suicide when I was on it and I wasn't on it that long.

Please be careful and let us know how you do.

lkishbach
Posts: 7
Joined: Apr 2011

Thanks for your thoughtful post. I am down to the last 3 days on .5 mg 4x day. I have talked to the neurosurgeon who began the weaning process before I was discharged from the hospital. It has only been 10 days since my brain surgery, let me say that. Day before yesterday I sat on my porch with my son & grandkids and thought, well, I think I may be starting to feel a little better. Then, poof, yesterday and today I can barely put one foot in front of the other to walk. I think the hard thing is not knowing what effects are from your medications and which ones, what is from having a brain tumor pushing its way around in there, what is from having the actual surgery and what may be from something developing in there. It is like you are left to a guessing game on your own. I see some have said about a week after coming off they began to feel better, so I am trying to be patient and hopeful. And, yes! Nystatin is helpful. My friend, a speech therapist, suggested it before I went in the hospital so I was happy to have it on hand when I came home, but it doesn't relieve the ulcer pain too much. I keep rinsing with water and baking soda and salt, which I used during chemo as well. I am so glad to have found this site with these blogs. It's been a source of hope and information. Thanks.

stonybrook66
Posts: 8
Joined: Apr 2011

My Dad is beginning the weaning process, and this is my first day on this website. Wished I knew then what I know now.. All these responses explain his mood swings, inability to sleep more than 2 hours at a time, weight gain, insatiable appetite!! The only positive I could see with this drug was it took away his headaches and he couldn't feel any pain from his knee replacement.
It is so difficult, we have to trust our loved ones are being guided down the correct medical path.. sometimes the treatment complicates the original diagnosis.
In light and love to all.

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

I agree about the weaning process. My docs sent me home without enough to wean off of and it became an issue when I was re-admitted to the hospital because of it.

My doctors didn't believe that I knew what I was talking about. Luckily for me, my husband could attest that I really wasn't a b***h, that I normally had the appetite of a bird, and that the insomnia was due to the decadron.

I also am Blessed with a primary care physician who has been treating me long enough to know that I had no business being on dec and instead put me on prednisone where I could come down in 5 mg increments instead of 10 mg. He also made sure that I am at each stage for at least 3 weeks so that my body doesn't go into shock or have any detrimental effects.

I hope your husband finds the relief he is seeking from his pain and the effects of the dec.

Peace.

Teresa

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

These darn steroids caused a lot of problems including my vision, I've read that steroids can cause cataracts. I can barely read anything on paper and I can barely see anything during bright sunny days/under bright lights because everything gets really blurry.

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

I have also noticed a problem with my vision. I have developed photophobia (sensitivity to light) but we have not been able to figure out why. Could be from the steroids? Never considered that, but I will look into that.

As for reading issues, I have had to have my prescription lenses changed and had a prism put in my left lens. It actually helps now especially since I am a voracious reader and can't imagine not being able to read.

I have noticed that I can't read anything that is laying down flat. I have to hold the newspaper or book out in front of me usually at arms' length in order to avoid getting blurry vision.

I hope you find some relief soon Rory.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

My opthalomologist said that I have steroid-induced cataract and he said that he cannot touch the cataract yet unless my oncologist says im clear to do any surgical procedures. Since my WBC is still recovering from the radiation and the immunosuppressive effect of the steroids I cannot have cataract surgery because I might risk infection

TV
Posts: 1
Joined: Mar 2011

I am 4 years removed from radiation and chemo and I am now looking at cataract surgery pretty soon. My ophthalmologist told me it was from the dexamethasone. Just great. I figure it's like crashing your new car. Everything just starts going wrong after that.

fandm
Posts: 4
Joined: Apr 2011

My mother has GBM. She has been on dexamethasone for 7 months now, first during radiation and then after surgery. They have been able to back off of it a little bit, but she still has many of the horrible side effects. She is so weak that she has to use a walker and has to be lifted out of chairs. Fortunately she did not have psychosis and she hasn't had too much pain. However, she has had a big problem with weight gain. She has gained 35 lbs and is getting so heavy that my dad, who is the primary caregiver, has difficulty lifting her (and I cannot lift her at all). Does anyone know anything that can be done about the insatiable appetite and weight gain? My dad asked the doctor and felt that he was blown off because the doctor feels Mom's case is terminal.

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

I was moved to Prednisone from Decadron because of all the side effects, including weight gain. Now that's not to say that I haven't gained any weight on prednisone, but I have found the side effects easier to tolerate and I don't have the gi-normous (sp?) appetite that I had while on Dec. When I was on Dec, I felt like my stomach was a huge pit that constantly needed feeding and on Prednisone I don't get that feeling.

Instead, what I do, is eat the same size portions I used to eat. I have a small appetite and rarely finish everything on my plate so it is not an issue for me.

I would make sure that your mother is eating healthy foods, even in between meals. Foods like fresh fruit, veggies, yogurt, etc can help at regular meal times.

BTW, when I was on Dec during radiation therapy in 1996 I gained 60 pounds. I never have been able to lose the last 15 of it.

As for the doctor? Get a 2nd opinion from a different doctor at a different location. By limiting your options to one doctor, you are limiting your mother to only what he knows. Another doctor may feel differently about the Dec and put her on a lower dose or on another medication altogether.

Good luck.

Teresa

fandm
Posts: 4
Joined: Apr 2011

Thanks Teresa, I really appreciate the suggestions. I'll see if Dad can talk to them about Prednisone and possibly talk to a different person about the weight gain. Unfortunately my parents are limited due to living in a small town.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

I had the same feeling when I was on dex. It feels like my stomach never gets full no matter how much I eat, when I eat a lot I feel full but my stomach keeps saying "FEED ME MORE" and I can still eat despite feeling full.

JulieMc
Posts: 1
Joined: May 2011

My mother went through radiation treatment for 5 weeks that ended this past February. She was on dexamethasone for 4 months and it was absolutely horrible. In March she noticed she started losing her hair. At first we thought she was just over-reacting, but now it is clear that my mother is losing her hair and it is not growing back - she is balding. Is this a side effect of the dexamethasone? Has anyone heard of this before? Any thoughts would be greatly appreciated.

Thanks

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

The hair loss is probably from the radiation therapy. Depending on how high the doses were, where they were concentrated, etc. I had minimal hair loss when undergoing radiation therapy but I noticed that after it was over, my hair started coming out in clumps. I decided to have my hair cut very short (think 1960's pixie cut) until it stopped falling out and started growing back in.

As for the Decadron and losing your hair, everything I have read actually states it should make your hair grow, not fall out. But with Decadron, who knows? It is a terrible medication that should either be pulled from the market or at least monitored much more closely than it is.

Best of luck to your mom!

Teresa

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

I don't think dexa caused the alopecia, it's probably more of radiation side effects, I lost all my hair during my WBRT and it took 3 months for my hair to start growing back again...

digginroots2
Posts: 3
Joined: Dec 2010

you need to be "gradually weened off of this drug"...period...my husband stopped eating and I thought he was going to die within a few weeks, they put him back on it and he did so much better...some cancer patients can never get off of it...mine is one of them. He has Melanoma to the brain...he is terminal, and I called Hospice yesterday...I'm losing him now...but stopping the steroid cold turkey nearly killed him 4 months ago..it was horrible.

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