Dear all,
While there be some arbitrariness to dex dosing, I would point out that there is a dose response up to a point. In other words, higher doses produce more myeloma cell kill. The downside to higher doses is more toxicity, especially when combined with thalidomide or lenalidomide. The low dose of dex used as part of carfilzomib studies is to prevent side effects related to infusion of the drug. Not for myeloma therapy. As such, Lisa, your mother should not spread her dose over the week. There is no evidence that this will be as effective. On the other hand, a 40 milligram dose once a week for a 92 pound person, especially if she is older, is a lot. I would have a LOW threshold for reducing the dose.
Good luck!
Pete V.
Forums
Re: Dexamethasone and insomnia
Dr. Voorhees,
Once again, I'm grateful for your thorough explanation and input! Mom's next appointment is Dec. 9th, and I've asked her to note the type and intensity of any side effects so that we can discuss the option of lowering her dose if necessary.
THANK YOU!
Once again, I'm grateful for your thorough explanation and input! Mom's next appointment is Dec. 9th, and I've asked her to note the type and intensity of any side effects so that we can discuss the option of lowering her dose if necessary.
THANK YOU!
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Dexamethasone and insomnia
Dr Voorhees,
Yes, they do give the 4mg to prevent Side Effects(chills/fever) from initial carfilzomib infusion, when therapy is initiated. But there is also a therapeutic dose of 20mg on the same days as the infusion, subsequent to initiation of therapy, as part of the regimen as well. i.e. myeloma therapy.
That's why I was so frightened, as the initial 4mg was making me zoom, I was like OMG now I am to take 5x that dose on infusion days for 8 cycles?!!! yikes
When you say higher doses of dex have higher multiple myeloma cell kill rate, doesn't prednisone produce same effect, even though it is 10x less potent than dex and far less toxic?
Yes, they do give the 4mg to prevent Side Effects(chills/fever) from initial carfilzomib infusion, when therapy is initiated. But there is also a therapeutic dose of 20mg on the same days as the infusion, subsequent to initiation of therapy, as part of the regimen as well. i.e. myeloma therapy.
That's why I was so frightened, as the initial 4mg was making me zoom, I was like OMG now I am to take 5x that dose on infusion days for 8 cycles?!!! yikes

When you say higher doses of dex have higher multiple myeloma cell kill rate, doesn't prednisone produce same effect, even though it is 10x less potent than dex and far less toxic?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Dexamethasone and insomnia
Mom took her first dose of Revlimid and dexamethasone yesterday. After reading the experiences of others on this forum who've taken dex, I'm not surprised that she didn't sleep a wink last night. She said she worked on projects all night and was thrilled with all she was able to accomplish. I had a feeling she'd view this as a "positive" thing, but I'm worried about the inevitable "crash". Can someone comment on the crash period after a dex "high"? Is it just pure exhaustion? If you take dex just one day a week, are you able to go back to a somewhat regular sleep cycle after the first few days?
Also, Mom has been very "hoarse" all day today, and I read that this could be a side effect of dex. Anyone else experienced hoarsenss with this treatment?
Thanks, love, and blessings to all!
Lisa
Also, Mom has been very "hoarse" all day today, and I read that this could be a side effect of dex. Anyone else experienced hoarsenss with this treatment?
Thanks, love, and blessings to all!
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Dexamethasone and insomnia
Hey Lisa!
Just speaking for myself...the 'crash" is like...complete wipe out exhaustion within 36 hrs of the last dose. I am fatigued and just sleep, or am totally sedentary on couch in bed. After that period, I return to normal have reasonable energy and get things done. My sleep does return to normal.
I too have the hoarseness.
Hope this helps.
Take care,
suzierose
Just speaking for myself...the 'crash" is like...complete wipe out exhaustion within 36 hrs of the last dose. I am fatigued and just sleep, or am totally sedentary on couch in bed. After that period, I return to normal have reasonable energy and get things done. My sleep does return to normal.
I too have the hoarseness.
Hope this helps.
Take care,
suzierose
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Dexamethasone and insomnia
Hey Suzierose!
It does help! All your posts help, and I thank you for being a blessing through your research, attitude, sense of humor, and compassion! You have my admiration and respect and are in my prayers daily!
Lots of love and blessings,
Lisa
It does help! All your posts help, and I thank you for being a blessing through your research, attitude, sense of humor, and compassion! You have my admiration and respect and are in my prayers daily!

Lots of love and blessings,
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Dexamethasone and insomnia
My husband has taken Dex for nearly 8 straight years. I worry that prolonged use will be detrimental but he has yet to develop kidney problems, diabetis or any of the other known side effects. He is now on once a week VCD and takes dex the day before and the day of treatment. He has extreme irritability and lack of any patience the days he is on the dex and then yes, the extreme fatigue the days he is off...generally by the 3rd off day. He calls it his extreme come down day. He does also do some self medication of the dex to help alleviate the pain in his spine. It is a roller coaster but the dex is the gasoline on the fire of the V and C....it makes it all work!!
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diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Dexamethasone and insomnia
Hi Eva and thank you so much for responding!
Wow - dex for 8 yrs! How encouraging to know that your husband is at least an 8 year survivor and has no problems from the continued use of dexamethasone! I pray that he has MANY more years of good results, and thank you again for sharing his experience!
Blessings,
Lisa
Wow - dex for 8 yrs! How encouraging to know that your husband is at least an 8 year survivor and has no problems from the continued use of dexamethasone! I pray that he has MANY more years of good results, and thank you again for sharing his experience!
Blessings,
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: Dexamethasone and insomnia
His longevity is amazing based on the fact that 2 men diagnosed at the exact same time as my husband and were the same age (we got to be very good friends with them and their wives through this journey) passed a long time ago. Gary is amazing. He still gets up and goes to work every day!! Some days it is difficult in that he has had so many parts cut off or replaced but he just keeps going.....so, there is hope for others. When he was first diagnosed in '03 we were told the average lifespan is about 30 months. My how times have changed since then!!! Good luck to you as well. It is a nasty, ugly disease and takes no prisoners.
Warmest regards,
Eva
Warmest regards,
Eva
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diamonds585 - Name: Eva
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: October, 2003
- Age at diagnosis: 52
Re: Dexamethasone and insomnia
Dear Eva,
I admire and am humbled and inspired by your husband's (and your own) perseverance and courage. I knew nothing about multiple myeloma until my mother's diagnosis a few weeks ago, but am quickly learning what an evil and unrelenting "enemy" it is!! You and your husband are on my heart and in my prayers for continued strength and healing!
I hope you know how amazing you both are, and, again, thank you for sharing!
Much love,
Lisa
I admire and am humbled and inspired by your husband's (and your own) perseverance and courage. I knew nothing about multiple myeloma until my mother's diagnosis a few weeks ago, but am quickly learning what an evil and unrelenting "enemy" it is!! You and your husband are on my heart and in my prayers for continued strength and healing!
I hope you know how amazing you both are, and, again, thank you for sharing!
Much love,
Lisa
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
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