I have been on dexamethasone, with serious insomnia difficulties prior to receiving it.
On Mondays, when I receive 40 mg, I am almost guaranteed not to sleep for the night, maybe for 2 hours at most. This is despite taking 1 mg of Klonopin (clonazepam), which usually does the trick. Unfortunately, I usually need to change any formal plans made for Tuesday so I can catch up on sleep. Similarly, my thinking is quite clear and I often read, organize a few papers, pet my dog, and tie up loose ends.
I used to just lie in bed, fretting about lost sleep, which seems to make it more stressful. Maybe I shoud follow suit and take a car trip with my wife after my 10 am meds.
Forums
Re: Dexamethasone and insomnia
Hi,
I have been on dexamethasone for a couple of years, down from 5 to 2 once a week. I do not sleep at all the first night, maybe an hour or so second night. I take a sleeping pill the third night; it usually has little effect. Then I am at work Monday, Tuesday, Wednesday, I manage with maybe 4 hours a night. Very tired after work, but don't want to sleep then as I worry that will stop me sleeping when I get to bed. Doctor can't give any solution.
I am also on Revlimid.
I'm wondering if my situation is a common one.
I have been on dexamethasone for a couple of years, down from 5 to 2 once a week. I do not sleep at all the first night, maybe an hour or so second night. I take a sleeping pill the third night; it usually has little effect. Then I am at work Monday, Tuesday, Wednesday, I manage with maybe 4 hours a night. Very tired after work, but don't want to sleep then as I worry that will stop me sleeping when I get to bed. Doctor can't give any solution.
I am also on Revlimid.
I'm wondering if my situation is a common one.
Re: Dexamethasone and insomnia
Heather,
I’ve had the same problem with dexamethasone, which I currently take at 20 mg weekly. My approach now is:
First night: Take dex right before bed, and I usually get 6 hours sleep before it takes full effect.
Second night: Take 1 mg lorazepam (Ativan), a sedative, which takes 1-2 hours to take full effect. I usually then sleep 6-8 hours
Third night: Take nothing or 5 mg zolpidem (Ambien), depending on how I feel.
The rest of the week I sleep well.
Good luck with whatever you try. Getting enough sleep is critical!
David
I’ve had the same problem with dexamethasone, which I currently take at 20 mg weekly. My approach now is:
First night: Take dex right before bed, and I usually get 6 hours sleep before it takes full effect.
Second night: Take 1 mg lorazepam (Ativan), a sedative, which takes 1-2 hours to take full effect. I usually then sleep 6-8 hours
Third night: Take nothing or 5 mg zolpidem (Ambien), depending on how I feel.
The rest of the week I sleep well.
Good luck with whatever you try. Getting enough sleep is critical!
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Dexamethasone and insomnia
My dad just got diagnosed at age 69.
He initially had to have surgery because the multiple myeloma had affected his upper arm, which had to be stabilized with a pin. The surgery went well and relieved his pain (thank God).
He also got a lung embolism, which knocked him out, but with blood thinners and oxygen he recovered from that relatively fast.
Meanwhile he started the treatment: Velcade (or at least some bortezomib) + dexamethasone, and we've just completed the first course - the 12 days of medications (ended yesterday with 1x dex), and we're just starting the 10 days "off" now.
My dad has not been an active guy the last few years by any means, a bit overweight (by Dutch standards), and his "active" life consisted of walking to the store, or doing light work around the house.
However, the last few days he's deteriorated fast as far as energy and brain fog. He's not been able to get any real sleep for about 4 nights now, and not really during the day either. He said he just can't sleep, and sometimes some pains keep him up. Needless to say, he's become more and more foggy, and some parts of the day just sits and nods off without getting proper rest or sleep.
Of course, the psychological impact of such recent news can also play a role, although he took that initially fairly well.
He was released from the hospital yesterday, and just spent his first night at home, which we had hoped would have been better since he was bored at the hospital, but the night was just as bad and restless. Oh, and on top of that, he's not a fan of sleeping pills, so that was not even tried as an option yet.
So I also am how to deal with this. My thought is that this is mainly to do with the dexamethasone. Would someone recommend sleeping pills? Or will it just go away now that he's off dex?
I'm just so fearful of someone in his state not getting proper sleep for so long.
He initially had to have surgery because the multiple myeloma had affected his upper arm, which had to be stabilized with a pin. The surgery went well and relieved his pain (thank God).
He also got a lung embolism, which knocked him out, but with blood thinners and oxygen he recovered from that relatively fast.
Meanwhile he started the treatment: Velcade (or at least some bortezomib) + dexamethasone, and we've just completed the first course - the 12 days of medications (ended yesterday with 1x dex), and we're just starting the 10 days "off" now.
My dad has not been an active guy the last few years by any means, a bit overweight (by Dutch standards), and his "active" life consisted of walking to the store, or doing light work around the house.
However, the last few days he's deteriorated fast as far as energy and brain fog. He's not been able to get any real sleep for about 4 nights now, and not really during the day either. He said he just can't sleep, and sometimes some pains keep him up. Needless to say, he's become more and more foggy, and some parts of the day just sits and nods off without getting proper rest or sleep.
Of course, the psychological impact of such recent news can also play a role, although he took that initially fairly well.
He was released from the hospital yesterday, and just spent his first night at home, which we had hoped would have been better since he was bored at the hospital, but the night was just as bad and restless. Oh, and on top of that, he's not a fan of sleeping pills, so that was not even tried as an option yet.
So I also am how to deal with this. My thought is that this is mainly to do with the dexamethasone. Would someone recommend sleeping pills? Or will it just go away now that he's off dex?
I'm just so fearful of someone in his state not getting proper sleep for so long.
-
uncrase - Name: Martijn
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Aug-2018
- Age at diagnosis: 69
Re: Dexamethasone and insomnia
I get 20 mg of dexamethasone by infusion with my other treatments. My doctor thinks that method has a smoother side effect profile, but it gives me less control over the timing. The only way I sleep that night is with 5 mg Ambien (zolpidem), which usually gets me about 4 hours. I find it's very important to go to bed right after taking Ambien, even if I don't think it's taken effect yet. There seems to be a short "window" in which it works and if I stay up waiting to feel sleepy, I may miss it.
I try to only take Ambien on that first night. On night two I might take a Benadryl (diphenhydramine). By night 3 I am crashing.
I completely understand not wanting to turn to a sleep aid. In my case, I think getting a little sleep on that first night has made a huge difference in my entire week. I'm physically stronger and mentally more stable. Sleep with the help of medication is probably not as good as natural sleep, but it's been far healthier for me than no sleep at all.
I try to only take Ambien on that first night. On night two I might take a Benadryl (diphenhydramine). By night 3 I am crashing.
I completely understand not wanting to turn to a sleep aid. In my case, I think getting a little sleep on that first night has made a huge difference in my entire week. I'm physically stronger and mentally more stable. Sleep with the help of medication is probably not as good as natural sleep, but it's been far healthier for me than no sleep at all.
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willow75 - Who do you know with myeloma?: me
- When were you/they diagnosed?: 2017
- Age at diagnosis: 42
Re: Dexamethasone and insomnia
I have been taking only 1/2 the adult dose of Benadryl to help me sleep, years after my induction therapy when I had to take a weekly dose of dex followed by the sub-Q Velcade. The Velcade causes some drowsiness, but at the time the adult dose of Benadryl helped me sleep. Another myeloma patient (Tracy J) had suggested Benadryl for the effects of dex and my oncologist didn't see any harm in it, either.
I have had very good experience with it, and it may be helping me with some allergic reactions, too.
I have had very good experience with it, and it may be helping me with some allergic reactions, too.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Dexamethasone and insomnia
I've mentioned this in other threads but thought I'd add it here. When I was on dex prior to my stem cell transplant, I found cannabis to be helpful with the insomnia issues. I would take the dex shortly before going to bed. I'd then smoke a small amount of marijuana and take a small dose of an edible cannabis product. The smoking part helped get me to sleep and the edible helped keep me that way. I usually needed to do this the second night after the dex dose as well. By the third night, I slept well without any pharmacological help. It's worth considering if you have medical cannabis available to you and you're comfortable with the idea.
Just a warning to be extremely careful with the edible dose if you go this route and you're not familial with cannabis products. Better to take too little and sleep poorly than to take too much! Medical cannabis dispensaries have many options when it comes to edibles - the people there can help you make sure you get something that won't be too strong.
Just a warning to be extremely careful with the edible dose if you go this route and you're not familial with cannabis products. Better to take too little and sleep poorly than to take too much! Medical cannabis dispensaries have many options when it comes to edibles - the people there can help you make sure you get something that won't be too strong.
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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
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