dexamethasone nightmare!
Comments
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dexamethasone experience
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,
JG0 -
Decadronjohngiustino said:dexamethasone experience
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
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.0 -
damn decadron
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.0 -
Decadronlkishbach said:damn decadron
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.
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.0 -
Blurry visionlkishbach said:damn decadron
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.
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.0 -
VisionRory1987 said:Blurry vision
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.
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.0 -
decadronpalmyrafan said:Decadron
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.
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.0 -
weaning off dexamethasoneHope456 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.
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.0 -
WeaningTAMMY S said:weaning off dexamethasone
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.
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.0 -
Blurry Visionpalmyrafan said:Vision
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.
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 infection0 -
Decadronlkishbach said:decadron
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.
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.0 -
Weaningstonybrook66 said:Decadron
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.
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.
Teresa0 -
Blurry VisionRory1987 said:Blurry Vision
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
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.0 -
weight gainTV said:Blurry Vision
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.
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.0 -
Weight Gainfandm said:weight gain
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.
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.
Teresa0 -
Weight gainpalmyrafan said:Weight Gain
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
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.0 -
I had the same feeling whenpalmyrafan said:Weight Gain
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
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.0 -
swelling joints after the brain surgerypalmyrafan said:Side Effects
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.
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?0
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