I receive 40 mg of dexamethasone and Velcade subq twice a week for two weeks and then I'm off for one week. I also take 25 mg Revlimid for 14 days and then I'm off for a week. I just finished my fourth cycle.
Usually after the dexamethasone, I have a couple days of high energy and never really crashed, just less energy. Last Thursday was the final treatment of this cycle and since that day I have been very fatigued and sleepy. I have not experienced this before. Is this common?
Thanks.
Forums
Re: Fatigue after dexamethasone (dex)?
Yes, right now taking 40 mg dex for four days in a row or 2 weeks then two days, with Velcade subq and two weeks of infusion bendamustine (Treanda). The fatigue is steadily getting worse by the end, but the swelling and water retention is terrible.
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jpollard - Name: jay pollard
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: jan 08
- Age at diagnosis: 52
Re: Fatigue after dexamethasone (dex)?
I believe it is pretty normal to experience high energy on the day of dex and for a day or two after, followed by a crash. I also believe this crash is more severe after being on dex for a while than at the start of treatment. This is exactly what I have experienced being on dexamethasone two different periods three years apart.
I have only been on pill dexamethasone, and I would take it on Mondays so that I would have high energy for the first few days of the week and work longer hours than when the crash would come around Wednesday afternoon or Thursday; I worked shorter hours and rested more, then try to recover by the weekend. In time I found I needed some weekend time to recover too.
Long-term use of dexamethasone can affect the amount of cortisol and testosterone your body makes, particularly cortisol. The body’s endocrine system in general can get thrown a bit out of balance. In my case, I had stopped making any cortisol at all at one point. It would probably be best for a doctor, especially an endocrinologist, to explain the effects of long-term, high-dose dexamethasone further.
I saw an endocrinologist shortly before I stopped dexamethasone that last time I was taking it. She ran a bunch of labs that explained why I was feeling the way I was, but being able to do something about it is another matter. 40 mg dexamethasone is a lot, and it is not always so simple to counter the effects of one drug simply by taking another.
I have only been on pill dexamethasone, and I would take it on Mondays so that I would have high energy for the first few days of the week and work longer hours than when the crash would come around Wednesday afternoon or Thursday; I worked shorter hours and rested more, then try to recover by the weekend. In time I found I needed some weekend time to recover too.
Long-term use of dexamethasone can affect the amount of cortisol and testosterone your body makes, particularly cortisol. The body’s endocrine system in general can get thrown a bit out of balance. In my case, I had stopped making any cortisol at all at one point. It would probably be best for a doctor, especially an endocrinologist, to explain the effects of long-term, high-dose dexamethasone further.
I saw an endocrinologist shortly before I stopped dexamethasone that last time I was taking it. She ran a bunch of labs that explained why I was feeling the way I was, but being able to do something about it is another matter. 40 mg dexamethasone is a lot, and it is not always so simple to counter the effects of one drug simply by taking another.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Fatigue after dexamethasone (dex)?
Dexamethasone has a lot of side effects and has often been referred to on this site, as the Devil Dex.
Typical - water retention, weight gain, insomnia, a day or two of intense high (like speed) followed by a crash, moodiness, flush face, hiccups, acid and upset stomach, scatter brain just to name some of the most common. It can also lead to loss of muscle mass after taking it for a long period of time.
The effects are worse with higher dosing. The typical beginning dose is 40 mg per week or 10 of the little green 4 mg pills. Two courses of 40 mg a week (80 mg) is considered high dose. There are many studies that indicate that low dose works as well or even better without the more severe side effects. Generally dex is backed down over time and you are seeing 20 mg or lower being used and spread to once every 2 weeks with maintenance.
If you are on high-dose dex and then suddenly stop without a gradual step back, you will likely suffer withdrawal symptoms with would include extreme fatigue.
Revlimid also can cause fatigue so when the two are combined you may be getting impacted by both. Some people cannot stand the higher dosing of Revlimid (25 mg) as it also can cause neuropathy. Thus you see it prescribed in lower doses (10 mg and even 5 mg).
Typical - water retention, weight gain, insomnia, a day or two of intense high (like speed) followed by a crash, moodiness, flush face, hiccups, acid and upset stomach, scatter brain just to name some of the most common. It can also lead to loss of muscle mass after taking it for a long period of time.
The effects are worse with higher dosing. The typical beginning dose is 40 mg per week or 10 of the little green 4 mg pills. Two courses of 40 mg a week (80 mg) is considered high dose. There are many studies that indicate that low dose works as well or even better without the more severe side effects. Generally dex is backed down over time and you are seeing 20 mg or lower being used and spread to once every 2 weeks with maintenance.
If you are on high-dose dex and then suddenly stop without a gradual step back, you will likely suffer withdrawal symptoms with would include extreme fatigue.
Revlimid also can cause fatigue so when the two are combined you may be getting impacted by both. Some people cannot stand the higher dosing of Revlimid (25 mg) as it also can cause neuropathy. Thus you see it prescribed in lower doses (10 mg and even 5 mg).
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Fatigue after dexamethasone (dex)?
Thanks for the responses. They are very helpful. This is a great site.
Re: Fatigue after dexamethasone (dex)?
Here is a little "trial and error" solution that has helped me.
I was getting the hyper feeling for the couple of days, just as you described. I stopped adding to that effect by cutting out most of my sugar (sugar substitute in coffee and no bananas) for two days, starting the morning before taking the dex with a heavy breakfast. I start using the sugar 48 hours later and eat a banana during the day, too. This little "sugar supplement management" seems to help smooth the energy 'peak and valley' effect of the dex. My morning sugar intake is about 3 teaspoons.
At least, I have not felt all weak and in need of a nap on the third day after taking dex (only 20 mg each Wednesday in my case) since I started doing this.
K_Shash
I was getting the hyper feeling for the couple of days, just as you described. I stopped adding to that effect by cutting out most of my sugar (sugar substitute in coffee and no bananas) for two days, starting the morning before taking the dex with a heavy breakfast. I start using the sugar 48 hours later and eat a banana during the day, too. This little "sugar supplement management" seems to help smooth the energy 'peak and valley' effect of the dex. My morning sugar intake is about 3 teaspoons.
At least, I have not felt all weak and in need of a nap on the third day after taking dex (only 20 mg each Wednesday in my case) since I started doing this.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Fatigue after dexamethasone (dex)?
This reply is to Jay Pollard. Jay, you are taking a whopper dose of dex each week at 160 mg.
I've never heard of such a high dose. Have you asked your physician about reducing the dose?
Studies have shown that low-dose dex is as effective (sometimes more so) as the brutally high dose.
Best wishes
I've never heard of such a high dose. Have you asked your physician about reducing the dose?
Studies have shown that low-dose dex is as effective (sometimes more so) as the brutally high dose.
Best wishes
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Daisy
Re: Fatigue after dexamethasone (dex)?
I am a life-long runner with a resting pulse now up to 46 beats/minute. The evening of dex, I am about 80, hard to sleep, but take zolpidem (Ambien) to help. Rate wears down to about 58 over a week, then starts again with my noon Thursday dex.
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Rick R
Re: Fatigue after dexamethasone (dex)?
I take 20 mg once weekly. I do have a response of heightened energy - some crankiness, unfortunately! I found that taking it at night shortens the time frame for the side effects.
I also take 25 mg of Revlimid. Both of these drugs were prescribed 2 years ago when the remission of my early 2008 ASCT began to be apparent. I started out taking the Revlimid 3 weeks straight with a week off. I quickly found that I was quite exhausted by the end of the third week. My oncologist switched me to 2 weeks of Revlimid, then a week off. It amounts to he same amount of drug. I experienced no fatigue with this regimen.
I concur with the responder who said that 40 mg of dex seems very high. Check with your doc re: the dex amount as well as trying a change in your Revlimid schedule. No one "recipe" chemo treatment works the same for everyone. And quality of life is very important.
I'm 65 years old, and since my Revlimid was changed, I was able to increase my pool swimming to an hour a day/ 4 days a week. I also bike, kayak and do lots of other physical stuff. Fatigue is a real downer, so be proactive and get rid of as much as you can!
I also take 25 mg of Revlimid. Both of these drugs were prescribed 2 years ago when the remission of my early 2008 ASCT began to be apparent. I started out taking the Revlimid 3 weeks straight with a week off. I quickly found that I was quite exhausted by the end of the third week. My oncologist switched me to 2 weeks of Revlimid, then a week off. It amounts to he same amount of drug. I experienced no fatigue with this regimen.
I concur with the responder who said that 40 mg of dex seems very high. Check with your doc re: the dex amount as well as trying a change in your Revlimid schedule. No one "recipe" chemo treatment works the same for everyone. And quality of life is very important.
I'm 65 years old, and since my Revlimid was changed, I was able to increase my pool swimming to an hour a day/ 4 days a week. I also bike, kayak and do lots of other physical stuff. Fatigue is a real downer, so be proactive and get rid of as much as you can!
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BevBaccelli
Re: Fatigue after dexamethasone (dex)?
Hello Spirit,
What you are describing is common among my patients, particularly when receiving twice a week (or more often) dexamethasone. I have used dex dosing during the week off to try and offset this side effect and sometimes it does help. Sometimes an extra cup of coffee or caffeinated beverage may also help. If possible, a day off of work can do wonders as well.
Without knowing the status of the disease control, it is hard to comment on reducing the dex dose. However, if the disease control is good, dropping to 20 mg of dex can sometimes help as well.
What you are describing is common among my patients, particularly when receiving twice a week (or more often) dexamethasone. I have used dex dosing during the week off to try and offset this side effect and sometimes it does help. Sometimes an extra cup of coffee or caffeinated beverage may also help. If possible, a day off of work can do wonders as well.
Without knowing the status of the disease control, it is hard to comment on reducing the dex dose. However, if the disease control is good, dropping to 20 mg of dex can sometimes help as well.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
12 posts
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