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Dexamethasone - side effects in Cycle 3
My husband has been on dexamethasone for 3 cycles of treatment now. I have noticed that when he has it now, he is WIRED - cannot sit still, cannot sleep, etc. The side effects seem to be getting worse as the disease is responding. His response has been great according to blood work. I suggested that maybe he talk to the oncologist about reducing his dose. He is too scared to, as he wants to keep pressing towards remission. Thoughts?
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Dexamethasone - side effects in Cycle 3
Dex is worst part of treatment and I've found nothing can help it except drinking A LOT of water. Expect Headaches/sometimes migranes. Insomnia. Weight gain. Irritability. And redness of skin. That's my short list of side effects of Dex. I'm on 40 mg a week and I split it 20 mg on Monday and 20 mg on Thursday.
Sorry to be bearer of bad news but as my doc says look at bright side it could always be worse and that's what I keep telling myself since i can't get away from dex. We've all tried as myeloma patients.
Mark
Sorry to be bearer of bad news but as my doc says look at bright side it could always be worse and that's what I keep telling myself since i can't get away from dex. We've all tried as myeloma patients.
Mark
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Barneasada - Name: Mark
- When were you/they diagnosed?: Jan 2007
- Age at diagnosis: 19
Re: Dexamethasone - side effects in Cycle 3
What is the dose of dexamethasone your husband is taking, and how often is he taking it?
Also, what other drugs is he being given right now? Velcade? Revlimid?
Also, what other drugs is he being given right now? Velcade? Revlimid?
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JimNY
Re: Dexamethasone - side effects in Cycle 3
Thanks for your responses.
My husband is on a Velcade shot, 700mg of Cytoxan and 40mg of Dex once per week.
He is ending Cycle 3 now.
My husband is on a Velcade shot, 700mg of Cytoxan and 40mg of Dex once per week.
He is ending Cycle 3 now.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Dexamethasone - side effects in Cycle 3
Hi LadyLib. My initial treatment was thalidomide with dexa. The dexa took my pain away, but I was wired. I slept poorly, talked a mile a minute, and was generally hyper. Then I would crash at the end of the cycle. After a couple of cycles, when we knew I was responding to the thalidomide, my oncologist cut back on the dexa. It's a necessary evil.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Dexamethasone - side effects in Cycle 3
LadyLib,
From the responses you are getting you can see what your husband is experiencing is typical for nearly everyone who is taking Dex at those doses during their treatment for myeloma. My advice would be not to try and counter the effects of Dex with other drugs. When I started Dex I did not sleep for two days, and I mean wide awake not feeling tired at all. I thought that this is what Meth is probably be like. Then the crash comes and the next couple of days are hard, then a few days feeling somewhat normal again, then starting all over again for the next week. I was prescribed sleeping pills to try to help with sleeping but I found they did little good and I started having bad dreams while I was taking them. I learned that Dex is just something I had to learn to live with and stopped the sleeping pills and trying to fight the effects of Dex with other drugs which have their own side effects. If I could not sleep then I would find something to do and sleep when I could, I was not going to try to force myself into a normal sleep cycle and just go with the flow This often means being up all night and sleeping in the day latter. I found it to be difficult to keep a normal work schedule and this was a reason I started going part time to work when I could.
From the responses you are getting you can see what your husband is experiencing is typical for nearly everyone who is taking Dex at those doses during their treatment for myeloma. My advice would be not to try and counter the effects of Dex with other drugs. When I started Dex I did not sleep for two days, and I mean wide awake not feeling tired at all. I thought that this is what Meth is probably be like. Then the crash comes and the next couple of days are hard, then a few days feeling somewhat normal again, then starting all over again for the next week. I was prescribed sleeping pills to try to help with sleeping but I found they did little good and I started having bad dreams while I was taking them. I learned that Dex is just something I had to learn to live with and stopped the sleeping pills and trying to fight the effects of Dex with other drugs which have their own side effects. If I could not sleep then I would find something to do and sleep when I could, I was not going to try to force myself into a normal sleep cycle and just go with the flow This often means being up all night and sleeping in the day latter. I found it to be difficult to keep a normal work schedule and this was a reason I started going part time to work when I could.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Dexamethasone - side effects in Cycle 3
I was prescribed low dose alprazolam (Xanax) to help me sleep. It worked well and I was able to get good chunks of sleep while on dex and I never had a melt down moment that many describe. I worked during my treatment and no one said I pulled a Jekyll and Hyde! I was lucky.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Dexamethasone - side effects in Cycle 3
Hi,
Dex can be difficult to handle for many patients. However, like Terry, I was lucky. Dex gave me energy and eliminated various aches and pains. For sleep I took .5 mg of Ativan each evening and at no time did it cause me any distress, to the contrary, I asked my doc if I could continue taking it after I finished chemo. He of course reminded me of the side effects to long term use of any steroid so I slowly weaned myself off. For me, I really LIKED dex! Go figger.
Dex can be difficult to handle for many patients. However, like Terry, I was lucky. Dex gave me energy and eliminated various aches and pains. For sleep I took .5 mg of Ativan each evening and at no time did it cause me any distress, to the contrary, I asked my doc if I could continue taking it after I finished chemo. He of course reminded me of the side effects to long term use of any steroid so I slowly weaned myself off. For me, I really LIKED dex! Go figger.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Dexamethasone - side effects in Cycle 3
I started my therapy yesterday. As a healthcare professional I knew the effects of the steroids. The first question/comment to my oncologist was for medication to counter balance the dex. He prescribed ambien for sleep. He also mentioned ativan. I opted for the ambien as I have to keep working and would rather have my sleep.
I am disappointed with physicians who prescribe high dose steroids and fail to proactively discuss/prescribe medication for the side effects which are sure to come. I realize we all do not respond to medication the same; but it should be discussed and options given.
I knew someone who's husband was placed on high dose steroids with no "teaching" from the physician. This family suffered for months prior to my arrival in their lives. I suggested the wife discuss this with the prescribing physician. Thankfully, he was weaned off soon thereafter; but suffered months of "steroid rage". It just isn't right to leave families to fend for themselves like that.
The most important thing I could pass on to patients is "There are no DUMB questions"!!! Ask about anything which concerns you and/or your family. Illness is not to be suffered by the patient; but affects the entire family. All concerns are important and should be received and problems solved.
I am disappointed with physicians who prescribe high dose steroids and fail to proactively discuss/prescribe medication for the side effects which are sure to come. I realize we all do not respond to medication the same; but it should be discussed and options given.
I knew someone who's husband was placed on high dose steroids with no "teaching" from the physician. This family suffered for months prior to my arrival in their lives. I suggested the wife discuss this with the prescribing physician. Thankfully, he was weaned off soon thereafter; but suffered months of "steroid rage". It just isn't right to leave families to fend for themselves like that.
The most important thing I could pass on to patients is "There are no DUMB questions"!!! Ask about anything which concerns you and/or your family. Illness is not to be suffered by the patient; but affects the entire family. All concerns are important and should be received and problems solved.
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Lin516 - Name: Lin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/09/2013
- Age at diagnosis: 57
Re: Dexamethasone - side effects in Cycle 3
I am on my month two "off week" from my initial treatment (Rev 25 mg daily and Dex 40 mg one time per week). So far I have had virtually no side effects - just a mild jitteriness from the Dex on Monday. I should get some protein levels later today to see how I am responding.
But last Wed. I had a big scare - my left side arm and leg became very weak, and this lasted two hours, and put me in the er/hospital for 24 hours. Nothing "visible" on CT and MRI of my brain, and my heart sonogram and carotid sonogram were all clear. I just couldn't walk correctly for two hours. I presume that is a Rev side effect (clot?). The doctors really couldn't pinpont a cause.
Scary... but it resolved well. My first big "challenge " from multiple myeloma since diagnosins in July. I know there will be others... But my spirits are good.
Anybody had clot-related challenges with rev?? I know deep vein thrombosis is a key risk oof this drug... Any ideas on reducing clot-related risk, other than stayng hydrated??
Scheduled for ASCT at Mayo in late january
Wesley
But last Wed. I had a big scare - my left side arm and leg became very weak, and this lasted two hours, and put me in the er/hospital for 24 hours. Nothing "visible" on CT and MRI of my brain, and my heart sonogram and carotid sonogram were all clear. I just couldn't walk correctly for two hours. I presume that is a Rev side effect (clot?). The doctors really couldn't pinpont a cause.
Scary... but it resolved well. My first big "challenge " from multiple myeloma since diagnosins in July. I know there will be others... But my spirits are good.
Anybody had clot-related challenges with rev?? I know deep vein thrombosis is a key risk oof this drug... Any ideas on reducing clot-related risk, other than stayng hydrated??
Scheduled for ASCT at Mayo in late january
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
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