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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

When to take Revlimid?

by Pjorg45 on Wed Aug 07, 2013 9:34 pm

I am starting my fourth cycle of Revlimid, Velcade, and dexamethasone (RVD) for multiple myeloma. One side affect I have is not being able to sleep. I get up in the middle of the night, especially on the days that I take the dex. I had been taking Revlimid in the morning and then for most of the afternoon and early evening I am in chemo hangover with low energy and a surging feeling throughout my body. I am trying to start taking the Revlimid now about 9:00 PM and it helps me sleep a little bit better and then I don't have the same low energy and weird feelings in the afternoon.

I am interested in other people's experiences or ideas on when the best time is to take Revlimid

Thanks, :D

Pjorg45
Name: Paul Jorgensen
When were you/they diagnosed?: May 1013
Age at diagnosis: 68

Re: When to take Revlimid?

by dnalex on Thu Aug 08, 2013 12:31 am

Hi Paul,

When my mom was doing RVD maintenance, she was advised by her doctor to take the dex doses in the mornings, and the Revlimid at night. I think this helps a bit, although she still had a number of nights where she was unable to sleep.

Good luck with everything, and best wishes!

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56

Re: When to take Revlimid?

by DallasGG on Thu Aug 08, 2013 11:55 am

I do the same as Alex's mother ... Dex in the morning and Revlimid at night about 10 pm. The Revlimid tends to make me feel very sleepy and I might as well take advantage of that going to sleep at night.

DallasGG
Name: Kent
Who do you know with myeloma?: myself
When were you/they diagnosed?: 6/20/2013
Age at diagnosis: 56

Re: When to take Revlimid?

by edgewater on Thu Aug 08, 2013 5:23 pm

I looked at the possible side effects and I thought it would make the most sense taking the Revlimid at night and hopefully sleep through some possible effects such as nausea and take advantage of the fatigue effect at night when I should be sleeping. That worked well for me. I was taking 25 mg daily for 21 days and then 7 days off.

The dex is another matter. I was prescribed 80 mg 1 time each week. There is no sleeping with that much dex. I should have been in bed with my feet up because I ultimately developed edema in my ankles. This caused an interruption in treatment until the edema cleared.

I am presently on 10 mg Revlimid continuous. My oncologist said the numbers are still heading in the right direction, so we will keep the present treatment plan.

edgewater

Re: When to take Revlimid?

by JBarnes on Thu Aug 08, 2013 11:39 pm

Revlimid at night. They split my dex into two days due to not sleeping. Still had insomnia so I started painting the house. After my cancer was in remission my entire house had a new coat of paint! Jerry

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: When to take Revlimid?

by NStewart on Sat Aug 10, 2013 12:00 pm

I have always taken the Revlimid in the morning. I do get fatigued late in the afternoon, but it isn't too bad and I've become used to it. I'm taking 15 mg of Revlimid for 21 days.

I used to take the dex in the morning, too, but really had problems sleeping that night and the next night with a major crash on the 3rd day. That's when I was on 40 mg of dex once a week. Then I decided to try taking the dex at night to see what would happen. I found that I was able to sleep well during that night and had my dex sweats during that night. The next day I was energized all day and slept, but not restfully, the next night and had a much milder crash on the 3rd day. This worked better for me.

Now that I'm back on treatment with 15 mg of Revlimid for 21 days and 20 mg of dex once a week, I continue to take the Revlimid in the morning and the dex at night. This works best for me. The jitteriness that I experience is from the dex, not the Revlimid.

While I was still working, I took the dex on Thursday night so that I would have more energy on Friday. Friday tended to be the day of the week that was the hardest for me to manage at work because of overwhelming fatigue from working all week. The dex helped, but I finally realized that I needed to stop working because I was so fatigued and my brain was working too slowly for the type of work that I was doing. I retired 2 months ago and am really enjoying not being tired all of the time.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: When to take Revlimid?

by Dr. Peter Voorhees on Sat Aug 10, 2013 12:40 pm

Most of our patients find that Revlimid at night works best. Dex is variable. Most of our patients like to take it early in the morning so the effects are less pronounced by bed time. However, we have a few patients who like to take the dex at night as well. In those patients, the side effects of dex seem to start several hours after they take it. As such, if they take it at night, the effects have not kicked in yet, so they are able to sleep. The dex effects are at full tilt first thing in the morning and then slowly improve over the rest of the day.

Hope this helps. Good luck!

Pete V.

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: When to take Revlimid?

by goldmine848 on Fri Aug 16, 2013 1:42 pm

Interesting, never thought to take the Revlimid in the evening. I have been taking the dex in the morning hoping the effect would be lessened by bedtime. The last couple of times I have taken an Ambien as well to assist. Would there be an issue with taking Revlimid and Ambien together at bedtime?

goldmine848
Name: Andrew
When were you/they diagnosed?: June 2013
Age at diagnosis: 60

Re: When to take Revlimid?

by dnalex on Fri Aug 16, 2013 2:53 pm

Andrew,

Maybe try Revlimid at night, but without Ambien, to see if that's enough to help you sleep? You should then ask your myeloma doctor about Ambien and Revlimid at the same time, just in case. Hopefully, you could avoid having to take Ambien altogether.

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56


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