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Dexamethasone dosage for maintenance?
If you are using dexamethasone for maintenance, what dose of dex are you taking, and how often are you getting it?
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Dexamethasone dosage for maintenance?
I take 40 mg twice a week for 3 weeks. The dexamethasone makes for sleepless nights. Hope this helps with your treatment.
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lbudd
Re: Dexamethasone dosage for maintenance?
I was on 20 mg of dex for the first three months of treatment, then 10 mg for final three months. Took it in the morning, I had no sleeping or "'roid rage" issues that I had heard about. Took it four days per week, two weeks out of every three. It worked.
This week started maintenance program of daily 10 mg lenalidomide capsules. No dex in my maintenance program.
This week started maintenance program of daily 10 mg lenalidomide capsules. No dex in my maintenance program.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Dexamethasone dosage for maintenance?
Hi Tori,
I have been on a maintenance program for about 4 months. Initially I was on Velcade injections once per week, Revlimid (15 mg) once/day 21 days on and 7 days of, as well as dexamethasone. I was also getting Zometa once per month, and that has been reduced to once every 3 months. The Velcade was discontinued after 2 cycles, leaving me on the dex, and the Revlimid. Dosage on the dex is 20 mg once per week.
I have timed the dex to better correspond with my sleep/wake cycles. I take it before bed (8:00 PM) on Sunday night. It wakes me up around 5:00 AM Monday. I am usually in an extremely good mood all day Monday. Tuesday is a little weird, with fatigue starting to set in on Wednesday. Thursday you don't want to be near me as I am a little angry about everything. Fridays things start to improve and Sat / Sun are usually pretty normal.
As of early June, all of my lab results showed things to be okay with regards to myeloma. The dex causes my glucose to spike for a day or two, but recedes back to normal pretty quickly. So ... so far so good, I go in for more lab work in late August. Hope there are no big changes. As far as I know, there are no plans to change my maintenance program at this time.
Much more than you asked for ... today is my dex day and I get a little over-verbal
.
GLC
I have been on a maintenance program for about 4 months. Initially I was on Velcade injections once per week, Revlimid (15 mg) once/day 21 days on and 7 days of, as well as dexamethasone. I was also getting Zometa once per month, and that has been reduced to once every 3 months. The Velcade was discontinued after 2 cycles, leaving me on the dex, and the Revlimid. Dosage on the dex is 20 mg once per week.
I have timed the dex to better correspond with my sleep/wake cycles. I take it before bed (8:00 PM) on Sunday night. It wakes me up around 5:00 AM Monday. I am usually in an extremely good mood all day Monday. Tuesday is a little weird, with fatigue starting to set in on Wednesday. Thursday you don't want to be near me as I am a little angry about everything. Fridays things start to improve and Sat / Sun are usually pretty normal.
As of early June, all of my lab results showed things to be okay with regards to myeloma. The dex causes my glucose to spike for a day or two, but recedes back to normal pretty quickly. So ... so far so good, I go in for more lab work in late August. Hope there are no big changes. As far as I know, there are no plans to change my maintenance program at this time.
Much more than you asked for ... today is my dex day and I get a little over-verbal
.GLC
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GLCarlton - Name: GLC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 62
Re: Dexamethasone dosage for maintenance?
Hi from Australia Tori,
My husband has recalcitrant myeloma (SCT in 2012, which only lasted for 6 months, and around 5 different treatments since). He is currently on pomalidomide (Pomalyst) plus 40 mg dexamethasone for 4 days on, 4 days off. He cannot sleep without the help of sleeping pills when he's on the 4 days "on" and says and does a few "interesting" things. This is a pretty high dose, though, so hopefully you'll be on a lower dose.
He has awful bruising of his skin .... the slightest bump or scratch and his skin peels like paper and huge bruises appear. He is quite clumsy and can say and do the most odd things with absolutely no memory of them later. He has a crash on about day 2 of the 4 days "off" and really hits a wall, requiring lots of sleeps and rests and on days 3 and 4 of the days "off" he comes good again.
Having said all that (I know, it's quite scary), his light chains have dropped dramatically in one month of this new regimen, so it's worth persevering from his point of view. The dexamethasone does tend to "melt" away muscle bulk, so it's worthwhile getting into a gentle exercise regimen to try and stay on top of that.
Good luck and keep fighting the good fight!
Cheers, Robyn
My husband has recalcitrant myeloma (SCT in 2012, which only lasted for 6 months, and around 5 different treatments since). He is currently on pomalidomide (Pomalyst) plus 40 mg dexamethasone for 4 days on, 4 days off. He cannot sleep without the help of sleeping pills when he's on the 4 days "on" and says and does a few "interesting" things. This is a pretty high dose, though, so hopefully you'll be on a lower dose.
He has awful bruising of his skin .... the slightest bump or scratch and his skin peels like paper and huge bruises appear. He is quite clumsy and can say and do the most odd things with absolutely no memory of them later. He has a crash on about day 2 of the 4 days "off" and really hits a wall, requiring lots of sleeps and rests and on days 3 and 4 of the days "off" he comes good again.
Having said all that (I know, it's quite scary), his light chains have dropped dramatically in one month of this new regimen, so it's worth persevering from his point of view. The dexamethasone does tend to "melt" away muscle bulk, so it's worthwhile getting into a gentle exercise regimen to try and stay on top of that.
Good luck and keep fighting the good fight!
Cheers, Robyn
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Robshines - Name: Robyn Pritchard
- Who do you know with myeloma?: My late husband/I have MGUS
- When were you/they diagnosed?: Blood tests
Re: Dexamethasone dosage for maintenance?
I was on Velcade, Revlimid and dexamethasone for four months. Then I was on Revlimid only for 21 days and 7 days off. My last bone marrow test showed 30% myeloma activity and my doctor changed my treatment to Pomalyst for 21 days and dexamethasone, 10 mg. 3 on Monday and 2 on Tuesday every week.
I don't have any problem sleeping, and feel pretty good for the first 2 days, but I start feeling fatigued and just "not good" after about 4 days.
Before you know it, it's time for the dex again, and the cycle repeats itself.
I don't have any problem sleeping, and feel pretty good for the first 2 days, but I start feeling fatigued and just "not good" after about 4 days.
Before you know it, it's time for the dex again, and the cycle repeats itself.
Re: Dexamethasone dosage for maintenance?
The reason I posed the question is because I have been on maintenance for two years and take 24 mg of dex IV along with subq Velcade.
I've made adjustments so I am not bothered by the side effects of being wired. My concern is the long term use of a steroid. I remain in complete stringent response. I would like to decrease the dosage of dex. My multiple myeloma specialist says don't mess with a winning protocol. My local oncologist is saying I can decrease frequency of treatments because of the potential side effects of prolonged steroid use.
Since it appears there is no standard dosage of dex, I'm thinking a compromise would be to keep the frequency of treatment the same but to decrease the dosage of dex.
Thanks for your input.
I've made adjustments so I am not bothered by the side effects of being wired. My concern is the long term use of a steroid. I remain in complete stringent response. I would like to decrease the dosage of dex. My multiple myeloma specialist says don't mess with a winning protocol. My local oncologist is saying I can decrease frequency of treatments because of the potential side effects of prolonged steroid use.
Since it appears there is no standard dosage of dex, I'm thinking a compromise would be to keep the frequency of treatment the same but to decrease the dosage of dex.
Thanks for your input.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Dexamethasone dosage for maintenance?
After two years of Revlimid maintenance, I stopped taking any medication (I stopped the dex after six months consolidation with Velcade). I remain in good partial remission, 0.2 g/dL (2 g/L) M-spike.
My thoughts (for what they're worth) is that when my M-spike goes back up to 0.5 I'll start back on the Revlimid and, if that doesn't work, I'll add a low dose of dex. I think there is much written about the long term use of steroids (not good ): "buffalo hump," "moon-face," weight gain, insomnia, road-rage, glaucoma, increased glucose A1C, any many others. But we also know that it is synergistic with most myeloma drugs.
Tough choices that nobody really knows the answer as everybody responds differently.
Coach Hoke
My thoughts (for what they're worth) is that when my M-spike goes back up to 0.5 I'll start back on the Revlimid and, if that doesn't work, I'll add a low dose of dex. I think there is much written about the long term use of steroids (not good ): "buffalo hump," "moon-face," weight gain, insomnia, road-rage, glaucoma, increased glucose A1C, any many others. But we also know that it is synergistic with most myeloma drugs.
Tough choices that nobody really knows the answer as everybody responds differently.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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