I got a call from my specialty pharmacy yesterday. That was one really nervous young lady. I think it was because she saw what my co-pay was going to be for this month's prescription ($2,600).
As it happens, I have a grant from "Good Days" (used to be Chronic Disease) that covered that, and since the cost of Revlimid gets me in AND out of the Medicare 'donut hole' in one fell dose, Kaiser will cover it for something like $12.00 a month for the rest of the year (whew).
Well, THAT made her feel better (me too) until, during the 'how are you doing with this?" section of the call, she found out that I take Revlimid in the mornings.
I thought she was going to fall out of her cubicle. I told her that I can't take it in the evening because it gives me insomnia. If I take it late, I don't sleep. Period.
Actually, I'm more likely to get a good night's sleep after taking dex (and I take only Revlimid 10 mg daily).
So I take Revlimid in the mornings, have a really good, productive day until about 3 p.m. or so, and then the 'tireds' kick in.
She said she'd "never heard of that' before.
So here's the question:
When do you take Revlimid, and does it make you sleepy, or keep you up? Am I just very strange?
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid - when do you take it?
Hi Dianalad,
I have been taking the Revlimid (25 mg) in the morning, but the weekly dex at night, with a sleeping pill. My pharmacy was surprised that I was taking the dex at night, since they suggest taking it in the a.m. I got the idea from Beacon readers to take dex in the evening.
Sometimes I do get tired with the Revlimid. Maybe I should try taking that at night too, but I find I remember to take it better if I just take it when I get up, along with a low-dose aspirin tablet to help to prevent blood clots.
I have been taking the Revlimid (25 mg) in the morning, but the weekly dex at night, with a sleeping pill. My pharmacy was surprised that I was taking the dex at night, since they suggest taking it in the a.m. I got the idea from Beacon readers to take dex in the evening.
Sometimes I do get tired with the Revlimid. Maybe I should try taking that at night too, but I find I remember to take it better if I just take it when I get up, along with a low-dose aspirin tablet to help to prevent blood clots.
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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: Revlimid - when do you take it?
Revlimid definitely makes me feel tired, but not precisely timed to when I take it. It's sort of a more cumulative effect over a couple of days. I take it in the morning, and the pharmacist at Briova has never asked me when I take it.
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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: Revlimid - when do you take it?
I take 10 mg Revlimid at night before I go to bed because it makes me feel sleepy. I noticed the sleepiness a lot more, though, when I was taking the 25 mg dose during my initial treatments.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Revlimid - when do you take it?
Perhaps I should be taking a different poll. 
Not 'when do you take it," but:
Does Revlimid make you sleepy, or does it give you insomnia?
Not 'when do you take it," but:
Does Revlimid make you sleepy, or does it give you insomnia?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid - when do you take it?
I've been on Revlimid maintenance (10 mg and 5 mg) for about 18 months and have tried taking it both in the morning and at night. I've decided I prefer it in the morning, after I exercise. I don't have a lot of fatigue with it either way. Do have some GI effects, but those are not too bad as long as I eat something for breakfast soon after taking it.
There is nothing in the label or any of the studies I have read about a particular time of day for taking it, so I wonder why the pharmacist was disturbed. Maybe she was thinking about the dexamethasone. Most people do take that in the morning, though I agree with Nancy that I've tried it at night with pretty good results.
There is nothing in the label or any of the studies I have read about a particular time of day for taking it, so I wonder why the pharmacist was disturbed. Maybe she was thinking about the dexamethasone. Most people do take that in the morning, though I agree with Nancy that I've tried it at night with pretty good results.
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Tough Mom - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2013
- Age at diagnosis: 45
Re: Revlimid - when do you take it?
Hi Tough Mom,
My oncologist wants me to take Revlimid early in the day because he said that it would be better for my kidneys to take it in the daytime when I could drink lots of water. My kidneys are compromised, though. If your kidneys are better, it might not matter.
My oncologist wants me to take Revlimid early in the day because he said that it would be better for my kidneys to take it in the daytime when I could drink lots of water. My kidneys are compromised, though. If your kidneys are better, it might not matter.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Revlimid - when do you take it?
I take it about an hour before bed. It definitely makes me sleepy.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Revlimid - when do you take it?
My husband was taking it in the morning and was very tired in the afternoon. The drive home from work in the evening was really bad for him. Then, we found out from our oncologist that he should be taking it in the evening, since the highest side effect is fatigue. By taking it in the evening, it has helped with his sleepiness in the afternoon.
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Bouselli
Re: Revlimid - when do you take it?
I started out, back in April 2014 when I was diagnosed with multiple myeloma, taking my Revlimid 25 mg around 5:00 in the evening. I was told to take the dexamethasone earlier in the day, because it could keep me awake at night. So, I took the dex around 10:00 a.m. and the Revlimid in the evening. I do drink a lot of water throughout the day and have had no indications of problems with kidneys.
When I later went to maintenance Revlimid 10 mg without the dex, I continued to take the Revlimid around 5:00 p.m. I don't notice being especially tired. I do have an issue with loose stools and have had to take Lomotil (diphenoxylate and atropine) almost daily because of that. The Lomotil does tend to make me a little drowsy when I take that. I am 74 years of age.
When I later went to maintenance Revlimid 10 mg without the dex, I continued to take the Revlimid around 5:00 p.m. I don't notice being especially tired. I do have an issue with loose stools and have had to take Lomotil (diphenoxylate and atropine) almost daily because of that. The Lomotil does tend to make me a little drowsy when I take that. I am 74 years of age.
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Bonnie - Name: Bonnie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April, 2014
- Age at diagnosis: 73
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