dexamethasone nightmare!
thanks.
sydney
Comments
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same here
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???0 -
same boat, different river...pamstjohn said:same here
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???
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.0 -
dexamthasonearkansasbrains said:same boat, different river...
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.
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?
Dante0 -
dex withdrawal
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!0 -
DRUG FROM HELL
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!0 -
I can't even report herebmanzer said:DRUG FROM HELL
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!
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.0 -
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.
Debbie0 -
thank you all.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
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.0 -
Glad to know I wasn't the crazy onearkansasbrains said:thank you all.
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.
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.0 -
Damn Steroids
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.0 -
had steroid issues tooRory1987 said:Damn Steroids
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.
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,
Cindy0 -
Steroidscindysuetoyou said:had steroid issues too
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
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
I guess Im having a lot of steroid side-effects since I have been on this drug for almost 2 months (started last december)0 -
My fiance has been on thisRory1987 said:Steroids
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
I guess Im having a lot of steroid side-effects since I have been on this drug for almost 2 months (started last december)
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?0 -
what to expectevon said:My fiance has been on this
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?
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.0 -
Dex side effectsevon said:My fiance has been on this
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?
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.0 -
Steroid Issues - Any suggestions for the swellingcindysuetoyou said:had steroid issues too
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
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.0 -
Steroid IssuesHope456 said:Steroid Issues - Any suggestions for the swelling
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.
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.0 -
Steroid Issues - weaned offpalmyrafan 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.
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.0 -
Side EffectsHope456 said:Steroid Issues - weaned off
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.
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.0
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