Steroid (dexamethazone) side effects?

Forums General Melanoma Community Steroid (dexamethazone) side effects?

  • Post
    POW
    Participant

      I have read a number of comments on this forum talking about how awful it is to be on steroids and how anxious people are to finally get off them.  It's scary to see so many strong, determined people who go through chemo with nary a wimper say how difficult it is to be on steriods. What's the deal with steroids, especially dexamethazone? What do they do to people?

      I have read a number of comments on this forum talking about how awful it is to be on steroids and how anxious people are to finally get off them.  It's scary to see so many strong, determined people who go through chemo with nary a wimper say how difficult it is to be on steriods. What's the deal with steroids, especially dexamethazone? What do they do to people?

    Viewing 8 reply threads
    • Replies
        lhaley
        Participant

          Each person can have different side effects.  I'm sure as I list these I will miss some, and am not saying that I'mve had them all.   I will tell you that the first time was for 5 months.  This time so far 2 months. 

          inability to sleep,  uncontroable mood swings,  loosing mass in your body which then become weaker and weaker,  cushings disease,  eye visions, extreme weight gain,  hump back, moon face,  headaches, thrush, exhaustion, diabetes, high blood pressure, depression ect

          I am sure that others can add more to this list.  Many cannot be weaned.  Dex is much stronger than prednisone, I think it's 7 times the strength.  When weaning if done too quickly can and cause seizures.  

          Linda

            deardad
            Participant

              Linda,

              My dad was on Dex 8mg a day and he felt great, good appetitie and general well being. I think if he didn't have those steriods his quality would have been down the two months prior to his passing.

              Nahmi

              lhaley
              Participant

                As I said, different for some of us.  While some have bad mood swings some have a feeling of euphoria and it gives a feeling that will be all.  

                A good appetite is because you are hungry all of the time.  The longer you are on dex the side effects get more difficult to deal with.  I'm not saying that it isn't a necessary medication but I don't realize what a caretaker really understands how you feel while on the dex.   I've been on a fb where those of us on dex are ofter chatting at 3 and 4 in the morning because we can't sleep.   Then there are some who once they are weaning they are needing to sleep 18 hours. 

                My nureosurgeon originally did not do the crainectormy because of the location of my first tumor. After being on the dex for several months he saw how my body was wasting and knew it was going to take a few more months for the edema to leave and if I kept longer on the dex my body would be wasted.   

                Also, steroids destroy's your immune system.  That's why if you are an immunitherapy they stop those treatments while on the steroids.  Examples like Ippi and Anti pd 1.  

                I'm on the b-raf drug right now and was originally put back on the steroids because I had 2 brain tumors bleeding.  I was down to 2mgs when I started having hives.  They kept me on a little longer and just today went down to 1 mg.   I'm hoping to be off of it very quickly!   

                Linda

                deardad
                Participant

                  Hi Linda,

                  I meant to address that to POW not you…sorry x

                  deardad
                  Participant

                    Hi Linda,

                    I meant to address that to POW not you…sorry x

                    deardad
                    Participant

                      Hi Linda,

                      I meant to address that to POW not you…sorry x

                      lhaley
                      Participant

                        As I said, different for some of us.  While some have bad mood swings some have a feeling of euphoria and it gives a feeling that will be all.  

                        A good appetite is because you are hungry all of the time.  The longer you are on dex the side effects get more difficult to deal with.  I'm not saying that it isn't a necessary medication but I don't realize what a caretaker really understands how you feel while on the dex.   I've been on a fb where those of us on dex are ofter chatting at 3 and 4 in the morning because we can't sleep.   Then there are some who once they are weaning they are needing to sleep 18 hours. 

                        My nureosurgeon originally did not do the crainectormy because of the location of my first tumor. After being on the dex for several months he saw how my body was wasting and knew it was going to take a few more months for the edema to leave and if I kept longer on the dex my body would be wasted.   

                        Also, steroids destroy's your immune system.  That's why if you are an immunitherapy they stop those treatments while on the steroids.  Examples like Ippi and Anti pd 1.  

                        I'm on the b-raf drug right now and was originally put back on the steroids because I had 2 brain tumors bleeding.  I was down to 2mgs when I started having hives.  They kept me on a little longer and just today went down to 1 mg.   I'm hoping to be off of it very quickly!   

                        Linda

                        lhaley
                        Participant

                          As I said, different for some of us.  While some have bad mood swings some have a feeling of euphoria and it gives a feeling that will be all.  

                          A good appetite is because you are hungry all of the time.  The longer you are on dex the side effects get more difficult to deal with.  I'm not saying that it isn't a necessary medication but I don't realize what a caretaker really understands how you feel while on the dex.   I've been on a fb where those of us on dex are ofter chatting at 3 and 4 in the morning because we can't sleep.   Then there are some who once they are weaning they are needing to sleep 18 hours. 

                          My nureosurgeon originally did not do the crainectormy because of the location of my first tumor. After being on the dex for several months he saw how my body was wasting and knew it was going to take a few more months for the edema to leave and if I kept longer on the dex my body would be wasted.   

                          Also, steroids destroy's your immune system.  That's why if you are an immunitherapy they stop those treatments while on the steroids.  Examples like Ippi and Anti pd 1.  

                          I'm on the b-raf drug right now and was originally put back on the steroids because I had 2 brain tumors bleeding.  I was down to 2mgs when I started having hives.  They kept me on a little longer and just today went down to 1 mg.   I'm hoping to be off of it very quickly!   

                          Linda

                          deardad
                          Participant

                            Linda,

                            My dad was on Dex 8mg a day and he felt great, good appetitie and general well being. I think if he didn't have those steriods his quality would have been down the two months prior to his passing.

                            Nahmi

                            deardad
                            Participant

                              Linda,

                              My dad was on Dex 8mg a day and he felt great, good appetitie and general well being. I think if he didn't have those steriods his quality would have been down the two months prior to his passing.

                              Nahmi

                            lhaley
                            Participant

                              Each person can have different side effects.  I'm sure as I list these I will miss some, and am not saying that I'mve had them all.   I will tell you that the first time was for 5 months.  This time so far 2 months. 

                              inability to sleep,  uncontroable mood swings,  loosing mass in your body which then become weaker and weaker,  cushings disease,  eye visions, extreme weight gain,  hump back, moon face,  headaches, thrush, exhaustion, diabetes, high blood pressure, depression ect

                              I am sure that others can add more to this list.  Many cannot be weaned.  Dex is much stronger than prednisone, I think it's 7 times the strength.  When weaning if done too quickly can and cause seizures.  

                              Linda

                              lhaley
                              Participant

                                Each person can have different side effects.  I'm sure as I list these I will miss some, and am not saying that I'mve had them all.   I will tell you that the first time was for 5 months.  This time so far 2 months. 

                                inability to sleep,  uncontroable mood swings,  loosing mass in your body which then become weaker and weaker,  cushings disease,  eye visions, extreme weight gain,  hump back, moon face,  headaches, thrush, exhaustion, diabetes, high blood pressure, depression ect

                                I am sure that others can add more to this list.  Many cannot be weaned.  Dex is much stronger than prednisone, I think it's 7 times the strength.  When weaning if done too quickly can and cause seizures.  

                                Linda

                                jmmm
                                Participant
                                  My husband is back on dexamethazone…he had a seizure due to side effects of gamma knife. He actually feels really good while on them…they seem to counteract all the nasty side effects of Zelboraf. He does have trouble sleeping, but we’ve figured out the timing to make it not so bad. Incredible appetite, weight gain, mood swings, accelerated heart rate. Not great, but they actually make him feel better, plus they relieve the swelling on his brain and so far, no more seizures. He’ll start to wean down in a couple of weeks, he’s done it before, so hopefully this time will be as easy as last time.
                                  jmmm
                                  Participant
                                    My husband is back on dexamethazone…he had a seizure due to side effects of gamma knife. He actually feels really good while on them…they seem to counteract all the nasty side effects of Zelboraf. He does have trouble sleeping, but we’ve figured out the timing to make it not so bad. Incredible appetite, weight gain, mood swings, accelerated heart rate. Not great, but they actually make him feel better, plus they relieve the swelling on his brain and so far, no more seizures. He’ll start to wean down in a couple of weeks, he’s done it before, so hopefully this time will be as easy as last time.
                                    jmmm
                                    Participant
                                      My husband is back on dexamethazone…he had a seizure due to side effects of gamma knife. He actually feels really good while on them…they seem to counteract all the nasty side effects of Zelboraf. He does have trouble sleeping, but we’ve figured out the timing to make it not so bad. Incredible appetite, weight gain, mood swings, accelerated heart rate. Not great, but they actually make him feel better, plus they relieve the swelling on his brain and so far, no more seizures. He’ll start to wean down in a couple of weeks, he’s done it before, so hopefully this time will be as easy as last time.
                                      Rocco
                                      Participant

                                        Had undergone many things during my attempts to get to NED.  Steroids played a part in that journey for over 1.5 years in a effort to keep some side effects from a trial at bay. I would say it took at least a full year for me to feel about 90% 'my normal' after having gotten off them entirely. Stamina, strength, increased sleep, healthier eating, off all meds.  

                                          I had to be put on a very (unusually) high dose of steroids and then weaned off of them gradually.  Started on IV steroids as outpatient (Solumedrol 1,000 ml) and then converted overto Prednisone.  Get this, 650 MG per day.  They started weaning me pretty fast by dropping 50 MG over the course of a week,, and then gradually 50 MG more dropped, etc., etc.   Over the course of 1.5 year it took 2 attempts to wean me off Prednisone as the closer I got to getting off of them, some of the original trial side effect returned.  All the steroid side effects listed by other posters I experienced.  I had to be placed on blood pressure meds since steroids impacted that area,  I was put on an anti-biotic 3x per week as a preventable measure since steriods can weaken your immune systm.  I was on Priolsec for acid reflux as the high dose of steroids daily caused an esophogeal spasm every once in a while, etc.  And likely a couple other meds to combat the steroid side effects.

                                        Some of the most issues for me were: the sleeplessness (maybe 3 hours of solid sleep per night at max0;  night sweats;  no strength or stamina at all; some muscle wasting; most food tasted bad – until I dropped down to about 20 MG of Prednisone per day and then the taste buds came back.   I never gained additional weight, but I did change in my appearance.  Moon face, back hump, shoulders increased in size – looked like a weight lifter.  iI believe its called Cushings syndrome – when fat from some areas of your body actually moves/relocates elsewhere – seriously!  Lost weight in butt, legs, etc, but increased in mass waist up – go figure.  That was perhaps the hardest…not being able to look at myself in a mirror and recognize me.  Others at work (unaware of what I was going through) thought I was merely gaining weight. 

                                        My mood never really changed much (no anger issues)- although I did start noticing signs of depression at the end of year 1.  Most of the time I was too busy dealing with what meds to take and when, how much Prednisone I was on for that week or day (since it was constantly changing), no sleep, and dealing with finding new clothes that fit, and working full time.    When I got down to about 25 MG per day I started sleeping more, tasting more. 

                                        For me it was 1.5 years on them and a year to fully get back to my normal. 

                                          POW
                                          Participant

                                            Thanks, everybody! Steroids really do seem to extensive and long-lasting side effects! I understand that not everybody gets all of the side effects and some people have almost none, but it helps me to know what to look for. It's somewhat confusing because most of the side effects from dexamethazone are symptoms that could also be ascribed to my brother's active brain mets (fatigue, insomnia, mood swings, and depression are most noticable). It's hard to know what, if anything, we can do to help him or what treatments we can lobby his doctors to institute or modify so he feels better. Sigh! But I will keep your advice in mind and keep doing the best we can do. Thanks again.

                                            POW
                                            Participant

                                              Thanks, everybody! Steroids really do seem to extensive and long-lasting side effects! I understand that not everybody gets all of the side effects and some people have almost none, but it helps me to know what to look for. It's somewhat confusing because most of the side effects from dexamethazone are symptoms that could also be ascribed to my brother's active brain mets (fatigue, insomnia, mood swings, and depression are most noticable). It's hard to know what, if anything, we can do to help him or what treatments we can lobby his doctors to institute or modify so he feels better. Sigh! But I will keep your advice in mind and keep doing the best we can do. Thanks again.

                                              POW
                                              Participant

                                                Thanks, everybody! Steroids really do seem to extensive and long-lasting side effects! I understand that not everybody gets all of the side effects and some people have almost none, but it helps me to know what to look for. It's somewhat confusing because most of the side effects from dexamethazone are symptoms that could also be ascribed to my brother's active brain mets (fatigue, insomnia, mood swings, and depression are most noticable). It's hard to know what, if anything, we can do to help him or what treatments we can lobby his doctors to institute or modify so he feels better. Sigh! But I will keep your advice in mind and keep doing the best we can do. Thanks again.

                                              Rocco
                                              Participant

                                                Had undergone many things during my attempts to get to NED.  Steroids played a part in that journey for over 1.5 years in a effort to keep some side effects from a trial at bay. I would say it took at least a full year for me to feel about 90% 'my normal' after having gotten off them entirely. Stamina, strength, increased sleep, healthier eating, off all meds.  

                                                  I had to be put on a very (unusually) high dose of steroids and then weaned off of them gradually.  Started on IV steroids as outpatient (Solumedrol 1,000 ml) and then converted overto Prednisone.  Get this, 650 MG per day.  They started weaning me pretty fast by dropping 50 MG over the course of a week,, and then gradually 50 MG more dropped, etc., etc.   Over the course of 1.5 year it took 2 attempts to wean me off Prednisone as the closer I got to getting off of them, some of the original trial side effect returned.  All the steroid side effects listed by other posters I experienced.  I had to be placed on blood pressure meds since steroids impacted that area,  I was put on an anti-biotic 3x per week as a preventable measure since steriods can weaken your immune systm.  I was on Priolsec for acid reflux as the high dose of steroids daily caused an esophogeal spasm every once in a while, etc.  And likely a couple other meds to combat the steroid side effects.

                                                Some of the most issues for me were: the sleeplessness (maybe 3 hours of solid sleep per night at max0;  night sweats;  no strength or stamina at all; some muscle wasting; most food tasted bad – until I dropped down to about 20 MG of Prednisone per day and then the taste buds came back.   I never gained additional weight, but I did change in my appearance.  Moon face, back hump, shoulders increased in size – looked like a weight lifter.  iI believe its called Cushings syndrome – when fat from some areas of your body actually moves/relocates elsewhere – seriously!  Lost weight in butt, legs, etc, but increased in mass waist up – go figure.  That was perhaps the hardest…not being able to look at myself in a mirror and recognize me.  Others at work (unaware of what I was going through) thought I was merely gaining weight. 

                                                My mood never really changed much (no anger issues)- although I did start noticing signs of depression at the end of year 1.  Most of the time I was too busy dealing with what meds to take and when, how much Prednisone I was on for that week or day (since it was constantly changing), no sleep, and dealing with finding new clothes that fit, and working full time.    When I got down to about 25 MG per day I started sleeping more, tasting more. 

                                                For me it was 1.5 years on them and a year to fully get back to my normal. 

                                                Rocco
                                                Participant

                                                  Had undergone many things during my attempts to get to NED.  Steroids played a part in that journey for over 1.5 years in a effort to keep some side effects from a trial at bay. I would say it took at least a full year for me to feel about 90% 'my normal' after having gotten off them entirely. Stamina, strength, increased sleep, healthier eating, off all meds.  

                                                    I had to be put on a very (unusually) high dose of steroids and then weaned off of them gradually.  Started on IV steroids as outpatient (Solumedrol 1,000 ml) and then converted overto Prednisone.  Get this, 650 MG per day.  They started weaning me pretty fast by dropping 50 MG over the course of a week,, and then gradually 50 MG more dropped, etc., etc.   Over the course of 1.5 year it took 2 attempts to wean me off Prednisone as the closer I got to getting off of them, some of the original trial side effect returned.  All the steroid side effects listed by other posters I experienced.  I had to be placed on blood pressure meds since steroids impacted that area,  I was put on an anti-biotic 3x per week as a preventable measure since steriods can weaken your immune systm.  I was on Priolsec for acid reflux as the high dose of steroids daily caused an esophogeal spasm every once in a while, etc.  And likely a couple other meds to combat the steroid side effects.

                                                  Some of the most issues for me were: the sleeplessness (maybe 3 hours of solid sleep per night at max0;  night sweats;  no strength or stamina at all; some muscle wasting; most food tasted bad – until I dropped down to about 20 MG of Prednisone per day and then the taste buds came back.   I never gained additional weight, but I did change in my appearance.  Moon face, back hump, shoulders increased in size – looked like a weight lifter.  iI believe its called Cushings syndrome – when fat from some areas of your body actually moves/relocates elsewhere – seriously!  Lost weight in butt, legs, etc, but increased in mass waist up – go figure.  That was perhaps the hardest…not being able to look at myself in a mirror and recognize me.  Others at work (unaware of what I was going through) thought I was merely gaining weight. 

                                                  My mood never really changed much (no anger issues)- although I did start noticing signs of depression at the end of year 1.  Most of the time I was too busy dealing with what meds to take and when, how much Prednisone I was on for that week or day (since it was constantly changing), no sleep, and dealing with finding new clothes that fit, and working full time.    When I got down to about 25 MG per day I started sleeping more, tasting more. 

                                                  For me it was 1.5 years on them and a year to fully get back to my normal. 

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