Hi,
I think your Dad and I are on the same clinical trial.
I believe there is some leeway allowed in terms of dosages. Once I finished the first eight cycles of the trial (which in my case included Revlimid, Velcade, and dexamethasone), I was supposed to start the "maintenance"phase with 40 mg of dexamethasone once a week, plus Revlimid. I was experiencing a lot of insomnia, plus weight gain, intense hunger, etc. My doctor started dropping my dexamethasone dosage, first by cutting it in half, then cutting it further. My symptoms didn't ease up much at all, and he finally decided that I should go off the dex completely. I am still officially in the maintenance phase of the trial, so apparently not taking the dexamethasone is not a deal-breaker. You might want to check with your father's doctor and/or the study coordinator about this. Even if he can't get off the dex until the maintenance phase, it might give him something to look forward to!
(My doctor felt that I would continue to do well without the dex, and so far that has been the case, knock on wood!)
In the meantime, everyone's suggestions are good. My nurse practitioner suggested Ativan, which was fairly helpful, although I seemed to be very sensitive to it, so I took half a pill before bedtime on nights when I thought I would need it. Even though it's only supposed to last for four hours or so, its "half-life" can go on for several more hours. I started by only taking it in the middle of the night if I couldn't sleep after several hours, but found I'd be too groggy in the morning.
I hope you find a good solution for your Dad!
Karen
Forums
Re: Problems sleeping on Revlimid & dexamethasone treatment
When I first started dexamethasone, 40 mg every Monday, I would often not sleep for two days. It was pretty strange to have not slept in 48 hours and not be that tired. If I could not sleep at night, I would try to sleep when I could anytime in the day. I was not working or on a reduced work schedule at the time so it was easy to deal with. Eventually I adapted a bit and was able to get a few hours sleep the first two nights after taking dexamethasone.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Problems sleeping on Revlimid & dexamethasone treatment
How much and how often is He taking the dexamethasone?
At the moment I am on a fairly light dose, 20 mg once per week. That day and the next I generally have trouble getting to sleep. If I think it is going to be a bad night, I take either a half or a whole Xanax. I don't like to do this because it makes me foggy the next day, but that is better than no sleep. I have also used Ativan in the past. Ambien did not work for me. I have used over-the-counter diphenhydramine (Benadryl) with some success, but again foggy the next day.
Several years ago I was taking 40 mg of dexamethasone 4 days in a row, and the sleep issue was much worse.
Different sleep aids or anti-anxiety drugs work better for different people. If he is on other antidepressants that will be a factor as well.
I have never had any sleep trouble with Revlimid.
Good luck!
At the moment I am on a fairly light dose, 20 mg once per week. That day and the next I generally have trouble getting to sleep. If I think it is going to be a bad night, I take either a half or a whole Xanax. I don't like to do this because it makes me foggy the next day, but that is better than no sleep. I have also used Ativan in the past. Ambien did not work for me. I have used over-the-counter diphenhydramine (Benadryl) with some success, but again foggy the next day.
Several years ago I was taking 40 mg of dexamethasone 4 days in a row, and the sleep issue was much worse.
Different sleep aids or anti-anxiety drugs work better for different people. If he is on other antidepressants that will be a factor as well.
I have never had any sleep trouble with Revlimid.
Good luck!
Re: Problems sleeping on Revlimid & dexamethasone treatment
Thank you all for your feedback, it's very helpful. We will certainly speak to my dad's oncologist about other options for anti-anxiety medication, and hopefully find a solution.
Re: Problems sleeping on Revlimid & dexamethasone treatment
Stumpy,
One last thing I want to add about trying to sleep on dexamethasone. I was prescribed Ambien (zolpidem) to try and help me get to sleep. When I first started dex, it did not seem to do anything at all to help me. I have seen others take Ambien and be out completely in 15 minutes and was hoping it would do the same for me, but no such luck. In time as I adapted to dexamethasone, it seemed Ambien may be helping a bit, but then I could sleep some without it so it was hard to say if Ambien was really helping me. I did find however that I was starting to have nightmares and bad dreams that did not happen when I did not take Ambien.
The relatively dubious value of Ambien helping me to sleep and the bad dreams led me to decided to not use it all. I decided that with a flexible work schedule and not being in the best of shape to work full time anyway, I would just deal with it and sleep when I could.
Be careful with the Ambien. If you decide to try it and it works for you, great. I have seen people who had significant memory lapses using Ambien, even driving their car around for hours and not having any memory of it. I never had that, just bad dreams.
One last thing I want to add about trying to sleep on dexamethasone. I was prescribed Ambien (zolpidem) to try and help me get to sleep. When I first started dex, it did not seem to do anything at all to help me. I have seen others take Ambien and be out completely in 15 minutes and was hoping it would do the same for me, but no such luck. In time as I adapted to dexamethasone, it seemed Ambien may be helping a bit, but then I could sleep some without it so it was hard to say if Ambien was really helping me. I did find however that I was starting to have nightmares and bad dreams that did not happen when I did not take Ambien.
The relatively dubious value of Ambien helping me to sleep and the bad dreams led me to decided to not use it all. I decided that with a flexible work schedule and not being in the best of shape to work full time anyway, I would just deal with it and sleep when I could.
Be careful with the Ambien. If you decide to try it and it works for you, great. I have seen people who had significant memory lapses using Ambien, even driving their car around for hours and not having any memory of it. I never had that, just bad dreams.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Problems sleeping on Revlimid & dexamethasone treatment
Yes I have trouble sleeping when I take dexamethasone. I take a Benadryl (diphenhydramine) before bed. That helps me stay a sleep. If I think I will have trouble falling a sleep, I take lorazepam. I like to read and that helps me also. Some people take Ambien,
I hope some of this helps. Rest is very important. Give his doctors a call. They might have suggestions for him. Maybe you or another family can make the call for him if he will allow it.
My best wishes to you,
Deb
P.S. This is a bit wacky. I have also listened to guided meditation at night. It helped my breathing pattern and was able to alleviate some stress. Might help him fall asleep. But he would probably need medication too.
I hope some of this helps. Rest is very important. Give his doctors a call. They might have suggestions for him. Maybe you or another family can make the call for him if he will allow it.
My best wishes to you,
Deb
P.S. This is a bit wacky. I have also listened to guided meditation at night. It helped my breathing pattern and was able to alleviate some stress. Might help him fall asleep. But he would probably need medication too.
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Deb
Re: Problems sleeping on Revlimid & dexamethasone treatment
I'm also wondering how common any type of sleep disorder is when taking myeloma-related medication such as Revlimid or anything else.
Ever since I was first diagnosed, my sleep pattern has been all over the place, sometimes not being able to fall sleep for several days and getting 2-3 hours of sleep.
Ever since I was first diagnosed, my sleep pattern has been all over the place, sometimes not being able to fall sleep for several days and getting 2-3 hours of sleep.
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6ixsilencer - Name: anthony paz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: around may 2016
- Age at diagnosis: 16
Re: Problems sleeping on Revlimid & dexamethasone treatment
Hello!
When I took 20 mg of dexamethasone per week, I also had problems with sleeping. A neurologist friend suggested I try trazodone, a prescription antidepressant that also is used for sleep disorders. My family doctor agreed that this would help. I realized that this was a chemically induced sleep disorder, and found that the trazodone did help me to sleep. I only had to use it twice a week, on the day of and day after taking dexamethasone, for it to have an effect.
Hope this helps!
When I took 20 mg of dexamethasone per week, I also had problems with sleeping. A neurologist friend suggested I try trazodone, a prescription antidepressant that also is used for sleep disorders. My family doctor agreed that this would help. I realized that this was a chemically induced sleep disorder, and found that the trazodone did help me to sleep. I only had to use it twice a week, on the day of and day after taking dexamethasone, for it to have an effect.
Hope this helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Problems sleeping on Revlimid & dexamethasone treatment
The only way I was able to get any relief from insomnia due to dexamethasone was to take a combination of medicines that my sleep doctor prescribed. In this way, each acts on a different part of the brain involved in sleep. I therefore can take less of each, with less negative effects.
One is Belsomra (suvorexant), which I believe suppresses an area of the brain that creates awake signals (people without these signals can have narcolepsy).
Another drug is Sonata (zaleplon), which is like a fast-acting Ambien, and increases activity in a part of the brain that facilitates sleep. It gets out of the body much more quickly than Ambien and hopefully has less chance to cause trouble.
Finally, there is gabapentin, which generally calms nerves down, and which I sometimes take anyway for restless leg syndrome that interferes with sleep.
I might not have the descriptions of what these drugs do exactly right, but this combination does give me some relief from the insomnia that a single drug was not able to. Perhaps you could ask your doctor if a combination of drugs might be more effective.
Hope this helps and good luck!
One is Belsomra (suvorexant), which I believe suppresses an area of the brain that creates awake signals (people without these signals can have narcolepsy).
Another drug is Sonata (zaleplon), which is like a fast-acting Ambien, and increases activity in a part of the brain that facilitates sleep. It gets out of the body much more quickly than Ambien and hopefully has less chance to cause trouble.
Finally, there is gabapentin, which generally calms nerves down, and which I sometimes take anyway for restless leg syndrome that interferes with sleep.
I might not have the descriptions of what these drugs do exactly right, but this combination does give me some relief from the insomnia that a single drug was not able to. Perhaps you could ask your doctor if a combination of drugs might be more effective.
Hope this helps and good luck!
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Problems sleeping on Revlimid & dexamethasone treatment
I have been dealing with this problem, quite successfully, just with a half the adult dose of Benadryl (diphenhydramine). This was suggested to me by Tracy J in an earlier forum thread started about 3 years ago about my induction therapy.
I have tried to skip Benadryl a few times, when I felt tired and sleepy around bedtime (9:30 p.m. for me), but I often woke up at midnight or at 1:00 a.m. and could not sleep again. Not only that, if I took the small amount of Benadryl at such a late hour, I could sleep, but got up feeling drowsy and stayed that way till noon. Therefore, I have been taking the Benadryl every night for the past few months. I fall asleep within about 30 minutes after taking the small dose of it and usually get a good six hours of sleep. And my oncologist has advised me that it would do no harm.
I have a few friends who have had a different reaction altogether. Benadryl kept them awake when they took it for allergies. It has been working very well for me, though.
I have tried to skip Benadryl a few times, when I felt tired and sleepy around bedtime (9:30 p.m. for me), but I often woke up at midnight or at 1:00 a.m. and could not sleep again. Not only that, if I took the small amount of Benadryl at such a late hour, I could sleep, but got up feeling drowsy and stayed that way till noon. Therefore, I have been taking the Benadryl every night for the past few months. I fall asleep within about 30 minutes after taking the small dose of it and usually get a good six hours of sleep. And my oncologist has advised me that it would do no harm.
I have a few friends who have had a different reaction altogether. Benadryl kept them awake when they took it for allergies. It has been working very well for me, though.
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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
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