Hello,
My father was diagnosed with multiple myeloma in March and is participating in the clinical study Revlimid and dexamethasone with or without elotuzumab for newly diagnosed, previously untreated multiple myeloma.
He is doing very well with the treatment. The only side effect that we can't seem to get under control is that he has a lot of difficulty sleeping at night. He averages around 2 hours of sleep each night, and we feel like he'd be doing much better if he could get better sleep. He takes anti-anxiety medication to help him relax, but it doesn't do enough to help him sleep.
Are the sort of problems he is having with sleep while on Revlimid and dexamethasone treatment common, and does anyone have any suggestions as to how my father can get some sleep?
Thanks,
A
Forums
Re: Problems sleeping on Revlimid & dexamethasone treatment
Hi A,
I have been tolerating the dexamethasone fairly well and I take a low dose Xanax (alprazolam) before bed which helps me get 6 or 7 hours sleep.
Good luck.
I have been tolerating the dexamethasone fairly well and I take a low dose Xanax (alprazolam) before bed which helps me get 6 or 7 hours sleep.
Good luck.
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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: Problems sleeping on Revlimid & dexamethasone treatment
Hi,
My husband has trouble sleeping, too, because of the dexamethasone. When he takes his dex at home, he takes it at bedtime and at least he can sleep that night okay. When the hospital gives him the dexamethasone with his carfilzomib (Kyprolis) treatments during the day, he always wakes up after sleeping only about 4-5 hours.
We are also trying to walk each day when the weather cooperates, since that also helps both of us sleep better.
Best wishes to your father and I hope that his treatments continue to go well.
My husband has trouble sleeping, too, because of the dexamethasone. When he takes his dex at home, he takes it at bedtime and at least he can sleep that night okay. When the hospital gives him the dexamethasone with his carfilzomib (Kyprolis) treatments during the day, he always wakes up after sleeping only about 4-5 hours.
We are also trying to walk each day when the weather cooperates, since that also helps both of us sleep better.
Best wishes to your father and I hope that his treatments continue to go well.
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MM wife
Re: Problems sleeping on Revlimid/dexamethasone treatment
My husband did the Rev/Vel/Dex for 24 weeks. He would sleep for two hours then be awake until the wee hours of the morning, only to sleep for maybe one more hour. Then it would be time to wake up.
He took Xanax for a bit, but ultimately took Ambien to help him sleep. It really helped, but was not a perfect remedy. He started at 5 mg, then increased to 10 mg.
Good luck with this.
He took Xanax for a bit, but ultimately took Ambien to help him sleep. It really helped, but was not a perfect remedy. He started at 5 mg, then increased to 10 mg.
Good luck with this.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: Problems sleeping on Revlimid & dexamethasone treatment
I found that taking the dexamethasone first thing in the morning and the Revlimid at night along with the occasional Ativan (lorazepam) right before bed helped tremendously.
Re: Problems sleeping on Revlimid & dexamethasone treatment
When I started my first course of Revlimid, I don't think I slept at all the first night. That effect subsided fairly quickly, though, and I haven't had trouble since. With luck, maybe his insomnia will subside.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Problems sleeping on Revlimid & dexamethasone treatment
HI Mike,
The "insomnia" is due to dexamethasone. It is not mere wakefulness
You have an energy level and your brain is ENGAGED not in a sleep fog. You can do lots of stuff except sleep. Your brain does not disengage and there is no fog. You zoom around doing laundry, cleaning rooms, reading scientific studies, etc. It is brain energy beyond your wildest imagination. Gives new meaning to the term "on steroids".
Yes, you are still irritable and snappy, but the brain races, unlike how insomniacs describe insomnia. The brain energy is beyond that.
The "insomnia" is due to dexamethasone. It is not mere wakefulness
You have an energy level and your brain is ENGAGED not in a sleep fog. You can do lots of stuff except sleep. Your brain does not disengage and there is no fog. You zoom around doing laundry, cleaning rooms, reading scientific studies, etc. It is brain energy beyond your wildest imagination. Gives new meaning to the term "on steroids".
Yes, you are still irritable and snappy, but the brain races, unlike how insomniacs describe insomnia. The brain energy is beyond that.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Problems sleeping on Revlimid & dexamethasone treatment
Hi,
I agree that sleep issues for some people on dexamethasone can be more difficult than the actual illness. My husband struggled with this for a long time before we found the right combination of medications. The point is we finally did.
Talk to your doctor. We tried them all; Valium (diazepam), Ativan (lorazepam), Ambien (zolpidem), trazodone (Desyrel), Remeron (mirtazapine), Finally, low-dose Zyprexa (olanzapine) worked and really helped the crazy mood swings dexamethasone causes.
Taking the dexamethasone at night helped also. Talk to your doctor, I know people are reluctant to take more medications, but dexamethasone is very powerful, and you may only need the sleeping med on dex nights.
I agree that sleep issues for some people on dexamethasone can be more difficult than the actual illness. My husband struggled with this for a long time before we found the right combination of medications. The point is we finally did.
Talk to your doctor. We tried them all; Valium (diazepam), Ativan (lorazepam), Ambien (zolpidem), trazodone (Desyrel), Remeron (mirtazapine), Finally, low-dose Zyprexa (olanzapine) worked and really helped the crazy mood swings dexamethasone causes.
Taking the dexamethasone at night helped also. Talk to your doctor, I know people are reluctant to take more medications, but dexamethasone is very powerful, and you may only need the sleeping med on dex nights.
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Jade
Re: Problems sleeping on Revlimid & dexamethasone treatment
Try a low dose alprazolam (Xanax). It really works wonders for me and, for the most part, neutralizes the negative effects of dexamethasone. I have never, ever had dex rage, etc. and it allows me to sleep.
Good luck. It is worth a try for you and is really a mellow drug in low-dose form.
Good luck. It is worth a try for you and is really a mellow drug in low-dose form.
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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: Problems sleeping on Revlimid & dexamethasone treatment
Sorry can't help you. I sleep better after my Revlimid, Velcade, and dexamethasone treatment.
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ramjet44 - Name: Roger
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 5/15/2012
- Age at diagnosis: 56
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