The dex and sleeplessness debate will always be a ripe topic of conversation. When I was taking 40 mg of dex once a week, I had a terrible time with sleeplessness and crashing. Now that I'm taking 20 mg of dex, I only have one night that I have problems with sleep. My doctor prescribed Valium (diazepam) to help with my muscle spasms and with my sleep problems. I would say that I take the 5 mg dose of Valium that one night that I usually have problems sleeping about 50% of the time.
If I haven't taken the Valium and haven't gone to sleep by 2 am, I just get up and read until I fall asleep. Some times it means that I'm up until around 6am before I fall asleep and then get about 2 hours of sleep in. If I have something important that I have to be up and awake for the next day, I will take the Valium because being up all night doesn't help my alertness the next day. This is only for my dex sleepless night. I don't take Valium any other time.
Nancy in Phila
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Dexamethasone-related sleep problems
I first took 50 mg of Benadryl, but it was not strong enough. Then, on recommendation of my oncologist, I tried trazodone and it works well. I take it about 30 minutes before I want to sleep. There are no side effects. I take 100 mg, but 50 mg might be strong enough for you. In the US, trazodone requires a prescription.
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JeffA
Re: Dexamethasone-related sleep problems
My husband was diagnosed in December and is on week two of his second cycle of 21 days of Revlimid, 1x week dexamethasone and 1x subQ shot of Velcade, and in the last couple of weeks has begun to experience some of the insomnia common to the dex.
His liver enzymes have begun to elevate, going from 25 to 42 in one week, and so I was really worried about adding Benadryl or another drug to his mix (he also takes lisinopril for blood pressure). We tend to lead a whole-food approach and prefer more natural alternatives before resorting to stronger prescriptive meds.
We played around with different things in the last couple weeks and found the following has helped him get a good nights sleep:
1 hour before bed - drink cup of Sleepytime tea or a mild decaf green tea with 1 teaspoon of raw honey. The honey helps regular blood sugar spikes which can contribute to sleeplessness. Sometimes eating a half banana or a VERY SMALL amount of a healthy carb can help lull your body to sleep.
If you can, find a FAST DISSOLVE 3 mg melatonin and also a 5 mg TIMED RELEASE Melatonin. Take the 3 mg just before getting in bed. Take 1 or 2 of the 5 mg right after you take the 3 mg. The 3 mg fast dissolve will help you get to sleep faster, combined with the honey and the timed release will help keep you sleeping.
Plus ... no fogginess in the morning. The brand of melatonin we are using at the moment is Natrol, but there are several others. You don't have to be fussy about brand name unless you have a gluten sensitivity or allergy.
His liver enzymes have begun to elevate, going from 25 to 42 in one week, and so I was really worried about adding Benadryl or another drug to his mix (he also takes lisinopril for blood pressure). We tend to lead a whole-food approach and prefer more natural alternatives before resorting to stronger prescriptive meds.
We played around with different things in the last couple weeks and found the following has helped him get a good nights sleep:
1 hour before bed - drink cup of Sleepytime tea or a mild decaf green tea with 1 teaspoon of raw honey. The honey helps regular blood sugar spikes which can contribute to sleeplessness. Sometimes eating a half banana or a VERY SMALL amount of a healthy carb can help lull your body to sleep.
If you can, find a FAST DISSOLVE 3 mg melatonin and also a 5 mg TIMED RELEASE Melatonin. Take the 3 mg just before getting in bed. Take 1 or 2 of the 5 mg right after you take the 3 mg. The 3 mg fast dissolve will help you get to sleep faster, combined with the honey and the timed release will help keep you sleeping.
Plus ... no fogginess in the morning. The brand of melatonin we are using at the moment is Natrol, but there are several others. You don't have to be fussy about brand name unless you have a gluten sensitivity or allergy.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Dexamethasone-related sleep problems
Great discussion!
LauraB - There is quite a bit of evidence that several of the active components of green tea (and other foods) may inhibit the efficacy of bortezomib (Velcade). Unfortunately. See the references below.
I have found that melatonin + diphenhydramine (Benadryl) usually works for me. Neither of these lasts very long in the system, and I don't experience a hung-over feeling the next morning. If I still can't sleep, I might add 0.5 mg of lorazepam (Ativan).
If I'm feeling particularly jazzed up from the dexamethasone, I'll take melatonin + zolpidem (Ambien) instead. This happens only a few times a month. Zolpidem does sometimes give me a morning headache and leave me feeling hung-over the next day. There is a warning out there about zolpidem lasting up to 9 hours in women, in particular, and the possibility that this would impair driving.
I'm careful not to take both Benadryl and zolpidem in the same night because I think that might cause too much sedation in me.
I have been able to control my insomnia very well this way.
Good luck.
References
JJ Shah et al, "Bortezomib and EGCG: no green tea for you?," Blood, June 4, 2009 (link to full text of article)
EB Golden et al, "Green tea polyphenols block the anticancer effects of bortezomib and other boronic acid–based proteasome inhibitors," Blood, June 4, 2009 (link to full text of article)
"Green Tea Blocks Effectiveness Of Velcade Treatment," The Myeloma Beacon, Feb 5, 2009.
LauraB - There is quite a bit of evidence that several of the active components of green tea (and other foods) may inhibit the efficacy of bortezomib (Velcade). Unfortunately. See the references below.
I have found that melatonin + diphenhydramine (Benadryl) usually works for me. Neither of these lasts very long in the system, and I don't experience a hung-over feeling the next morning. If I still can't sleep, I might add 0.5 mg of lorazepam (Ativan).
If I'm feeling particularly jazzed up from the dexamethasone, I'll take melatonin + zolpidem (Ambien) instead. This happens only a few times a month. Zolpidem does sometimes give me a morning headache and leave me feeling hung-over the next day. There is a warning out there about zolpidem lasting up to 9 hours in women, in particular, and the possibility that this would impair driving.
I'm careful not to take both Benadryl and zolpidem in the same night because I think that might cause too much sedation in me.
I have been able to control my insomnia very well this way.
Good luck.
References
JJ Shah et al, "Bortezomib and EGCG: no green tea for you?," Blood, June 4, 2009 (link to full text of article)
EB Golden et al, "Green tea polyphenols block the anticancer effects of bortezomib and other boronic acid–based proteasome inhibitors," Blood, June 4, 2009 (link to full text of article)
"Green Tea Blocks Effectiveness Of Velcade Treatment," The Myeloma Beacon, Feb 5, 2009.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Dexamethasone-related sleep problems
Hi Laura,
I'd be careful with the melatonin, as well as the green tea (which Tracy mentioned). There are conflicting studies about melatonin's synergistic or antagonistic effects when combined with different chemo agents on different types of tumors. For example, see the summary here:
http://www.mskcc.org/cancer-care/herb/melatonin
The best thing is to discuss the use of any of these supplements with your husband's oncologist.
Best wishes to you and your husband. I hope his treatment goes well. Please keep us posted.
Mike
I'd be careful with the melatonin, as well as the green tea (which Tracy mentioned). There are conflicting studies about melatonin's synergistic or antagonistic effects when combined with different chemo agents on different types of tumors. For example, see the summary here:
http://www.mskcc.org/cancer-care/herb/melatonin
The best thing is to discuss the use of any of these supplements with your husband's oncologist.
Best wishes to you and your husband. I hope his treatment goes well. Please keep us posted.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Dexamethasone-related sleep problems
I re-read this thread since my husband is going onto his second go-round with chemo after relapse and already experiencing dex insomnia.
I didn't see anything new posted, but I wanted to update my own advice:
As far as green tea or melatonin go - yes, it can interfere with the effects of Velcade, but timing is everything. When you take it makes a big difference. It will probably not hurt or harm you if you avoid it on the day you receive treatment and refrain for 24 hours.
I think the reason medical professionals warn people about using natural supplements for medicinal purposes is because many people don't understand just because it's "natural" or "organic" doesn't mean it isn't potent or can't be harmful. Conversely, many doctors don't have a clue how to utilize natural medicine to enhance traditional treatment approaches. Even the so-called studies are limited in design and application.
For example - take curcumin. Wonderful substance - studies at Memorial Sloan show it works wonderfully for treatment resistant colon cancer, actually enhancing the efficacy of chemotherapy. It's a tremendous cancer fighter. Yet, that too inhibits Velcade if - .wait for it - it's taken 24 hours before and after a chemo treatment. Otherwise, It's perfectly safe to take the other days of the week.
Also, many people don't drink organic tea, yet unless they're organic, teas (of any kind) contain some of the highest pesticide residues (talk about harmful!).
Our bodies produce melatonin naturally. The dex inhibits that production as does other factors.
Generalizations don't work - natural approaches to medicine shouldn't be treated any differently than regular medicine. Just as chemo can be customized, so can natural medicine. Always ask your doctor first. One of the first things we did after my husband was diagnosed was visit the Zakim Center for Integrative Medicine at Dana Farber where were discussed options for adding supplements to his treatment protocol.
For anyone seeking to merge an Eastern/Western approach, don't hesitate to seek out experts coming at medicine from both directions. You can have the best of both worlds!
I didn't see anything new posted, but I wanted to update my own advice:
As far as green tea or melatonin go - yes, it can interfere with the effects of Velcade, but timing is everything. When you take it makes a big difference. It will probably not hurt or harm you if you avoid it on the day you receive treatment and refrain for 24 hours.
I think the reason medical professionals warn people about using natural supplements for medicinal purposes is because many people don't understand just because it's "natural" or "organic" doesn't mean it isn't potent or can't be harmful. Conversely, many doctors don't have a clue how to utilize natural medicine to enhance traditional treatment approaches. Even the so-called studies are limited in design and application.
For example - take curcumin. Wonderful substance - studies at Memorial Sloan show it works wonderfully for treatment resistant colon cancer, actually enhancing the efficacy of chemotherapy. It's a tremendous cancer fighter. Yet, that too inhibits Velcade if - .wait for it - it's taken 24 hours before and after a chemo treatment. Otherwise, It's perfectly safe to take the other days of the week.
Also, many people don't drink organic tea, yet unless they're organic, teas (of any kind) contain some of the highest pesticide residues (talk about harmful!).
Our bodies produce melatonin naturally. The dex inhibits that production as does other factors.
Generalizations don't work - natural approaches to medicine shouldn't be treated any differently than regular medicine. Just as chemo can be customized, so can natural medicine. Always ask your doctor first. One of the first things we did after my husband was diagnosed was visit the Zakim Center for Integrative Medicine at Dana Farber where were discussed options for adding supplements to his treatment protocol.
For anyone seeking to merge an Eastern/Western approach, don't hesitate to seek out experts coming at medicine from both directions. You can have the best of both worlds!
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Dexamethasone-related sleep problems
Some time ago, on May 3rd to be precise, among the comments to one of Trevor William’s columns, a person named Tishpa reported on the suggestion from a nurse to take dex in the evening, and commented favorably on the results.
Tired of sleepless nights, I decided that I would also give it a try. I liked the result! I had noticed that it takes several hours for cortisone to hit, and the first night I slept my usual 9 hours, perhaps not as deeply as usual, but I still slept! No problems on the second night either. The redness that appears on my cheeks on Day 2 started towards evening instead. The next day I still had it, but only for a few hours. (In this case it pays off to be a woman: foundation covers the redness nicely!)
So, personally, I am happy with this Copernican Revolution!
Tired of sleepless nights, I decided that I would also give it a try. I liked the result! I had noticed that it takes several hours for cortisone to hit, and the first night I slept my usual 9 hours, perhaps not as deeply as usual, but I still slept! No problems on the second night either. The redness that appears on my cheeks on Day 2 started towards evening instead. The next day I still had it, but only for a few hours. (In this case it pays off to be a woman: foundation covers the redness nicely!)
So, personally, I am happy with this Copernican Revolution!
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Dexamethasone-related sleep problems
I am on 40 mg of dexamethasone and have been since April. It is supposed to keep my hemoglobin, platelet, red blood and white blood cells, and various other blood numbers stabilized. I take the dexamethasone on Sunday morning at 1 a.m. and sleep well (with my usual tramadol and zolpidem that I normally take ever night) on the Saturday night / Sunday morning sleep and spend the rest of Sunday after waking up feeling crappy and don't sleep Sunday night at all.
Lots of different side effects: achy, sweat non stop, sometimes blurs my vision, today my legs were shaky and wanted to not stand well, etc. But usually on Monday (even thought don't sleep Sunday night) all I want to do is clean, wash clothes, change sheets, etc, but it also effects other nights sleep during the week.
Hope you all feel better soon!
Lots of different side effects: achy, sweat non stop, sometimes blurs my vision, today my legs were shaky and wanted to not stand well, etc. But usually on Monday (even thought don't sleep Sunday night) all I want to do is clean, wash clothes, change sheets, etc, but it also effects other nights sleep during the week.
Hope you all feel better soon!
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Jackie Alley
Re: Dexamethasone-related sleep problems
Well, note the time (4:12 am), and I'm dancing with dex. I gave in 3 years ago that I'll be awake. Ii find it best to not get upset,and just go with it. I don't take any meds for sleep in case they may interact with the other 13 pills I take a day. I'm also one of the few that gets all the side effects.
I also got my four month tests back yesterday, and my numbers have crept back up, now PET scan, and discussion on the attack.
Like I said, you gotta just roll with it.
I also got my four month tests back yesterday, and my numbers have crept back up, now PET scan, and discussion on the attack.
Like I said, you gotta just roll with it.
Re: Dexamethasone-related sleep problems
Hi all,
On Wednesday I had a 40 mg dose of dexamethasone as part of my cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment regimen. I slept rather poorly Wednesday night, feeling very charged. I decided not to fight it, got up, and did all those chores that needed doing. I also took a good look at the night sky. Lovely time of the year. There are blessings in getting up early.
I’ve only started my treatment about 6 weeks ago and I already have the sense that my steroid buzz seems to be getting more intense. I wonder what I’ll be like by the end of treatment. I can handle the sleeplessness, especially if I can get a prescription of some sleeping aid, such as lorazepam (Ativan). I am more worried about my increased irritability and snappiness.
Sigh,
Joseph
On Wednesday I had a 40 mg dose of dexamethasone as part of my cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment regimen. I slept rather poorly Wednesday night, feeling very charged. I decided not to fight it, got up, and did all those chores that needed doing. I also took a good look at the night sky. Lovely time of the year. There are blessings in getting up early.
I’ve only started my treatment about 6 weeks ago and I already have the sense that my steroid buzz seems to be getting more intense. I wonder what I’ll be like by the end of treatment. I can handle the sleeplessness, especially if I can get a prescription of some sleeping aid, such as lorazepam (Ativan). I am more worried about my increased irritability and snappiness.
Sigh,
Joseph
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
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