I have been on a maintenance dose of 15mg of Revlimid and dex for about 18 months now. I have had a real problem tolerating the steroid dex. My doctor had decreased the dose steadily till I am only taking 4mg one day per week and still I have much trouble tolerating the drug. I have been taking 2mg in the morning and 2mg in the evening.
I had an episode on steroid day this week and this has happened three other times in the past 18 months. It is always when I sit down to dinner and as I start to eat my stomach seems to be on fire and it gets to the point that I cannot stand it. The past three times the condition has passed in about 15 minutes but this time I was in agony for more than three hours doubled over in pain. I never have any problem only on steroid day I have come to the conclusion that I can no longer take them.
How many of you are on maintenance with Revlimid without dex? If you do not take dex, has it affected your numbers? My M spike has ranged from .6 to .7 in the last 18 months. I hope that if I do stop the dex the cancer will not come with a vengeance.
Forums
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: Severe side effects of dex (dexamethasone)?
Hi Ed,
I have been on 10mg of Revlimid since October of 2012 with NO dex. I HATE that stuff! I have been in CR since March of 2013.
The dex did a number on my leg muscles. They were constantly sore for the longest time, even after stopping it. Pain was way worse going down steps, especially in my calves. My thighs hurt so bad that when the grand kids climbed up on my lap it felt like getting poked with a broom handle. I will never take that stuff again unless I have no other choice.
I have been on 10mg of Revlimid since October of 2012 with NO dex. I HATE that stuff! I have been in CR since March of 2013.
The dex did a number on my leg muscles. They were constantly sore for the longest time, even after stopping it. Pain was way worse going down steps, especially in my calves. My thighs hurt so bad that when the grand kids climbed up on my lap it felt like getting poked with a broom handle. I will never take that stuff again unless I have no other choice.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Severe side effects of dex (dexamethasone)?
Hi Ed,
We're really sorry to hear about the problems you're having with your maintenance regimen.
You asked in your posting about how common it is for people on Revlimid maintenance to be taking both Revlimid and dex.
We did a poll a few months ago about the maintenance regimens people here in the forum are on. You can see the results here:
https://myelomabeacon.org/forum/weekly-poll-current-maintenance-regimen-2013-t2346.html
As you'll see, most people on Revlimid maintenance are not taking dex along with the Revlimid. They're just taking Revlimid.
That doesn't mean it's not a good idea for you to be taking dex as well. We're sure your doctor has reasons for asking you to take the dex along with the Revlimid.
Good luck (and we hope you get some advice about the side effects you're experiencing).
We're really sorry to hear about the problems you're having with your maintenance regimen.
You asked in your posting about how common it is for people on Revlimid maintenance to be taking both Revlimid and dex.
We did a poll a few months ago about the maintenance regimens people here in the forum are on. You can see the results here:
https://myelomabeacon.org/forum/weekly-poll-current-maintenance-regimen-2013-t2346.html
As you'll see, most people on Revlimid maintenance are not taking dex along with the Revlimid. They're just taking Revlimid.
That doesn't mean it's not a good idea for you to be taking dex as well. We're sure your doctor has reasons for asking you to take the dex along with the Revlimid.
Good luck (and we hope you get some advice about the side effects you're experiencing).
Re: Severe side effects of dex (dexamethasone)?
I had one ASCT so far in May of 2012 and went till September 2012 without any meds. After a marrow biopsy I found I was not cancer free as I had hoped I would be.I was put on a maintenance plan of the Revlimid and dex, which is their standard care after transplant.
My doctors work out of the Hillman Cancer Center in Pittsburgh and I must say they have given me the absolute best care available. My transplant doctor and my oncologist have been right on so far. I think the reason they wanted me to try to take the steroid was that they say the dex makes the Revlimid work better.
I tried my best to take the dex as directed but even as stubborn and determined as I was to tolerate the drug, this last episode was the last straw. I have suffered greatly taking this drug but I find I can no longer take it. It seems like any time there is a side effect from a drug I get them to the max. I have climbed the walls had my muscles scream while sweating heavily from the drug along with slight depression at times. The crash comes and I sleep for 16 hours per day for a couple of days. With the dex I always figured there was a price to pay for treating the cancer but the quality of life is very poor taking the drug.
As I said I am sensitive to most drugs. I take the Revlimid and as I am told it builds up in my system so by the time I am on the last 7 days of my 21 day cycle the nausea coupled with the days I am miserable with the steroids I have not had a " normal " day since the time I was on no meds after my transplant.
I am to see my transplant doctor on Monday and to meet with my oncologist in a couple of weeks and I think I am going to request I quit taking the dex and see where they go with it. I am encouraged to see many of you are not on the dex and I hope I can stop taking it too.
My doctors work out of the Hillman Cancer Center in Pittsburgh and I must say they have given me the absolute best care available. My transplant doctor and my oncologist have been right on so far. I think the reason they wanted me to try to take the steroid was that they say the dex makes the Revlimid work better.
I tried my best to take the dex as directed but even as stubborn and determined as I was to tolerate the drug, this last episode was the last straw. I have suffered greatly taking this drug but I find I can no longer take it. It seems like any time there is a side effect from a drug I get them to the max. I have climbed the walls had my muscles scream while sweating heavily from the drug along with slight depression at times. The crash comes and I sleep for 16 hours per day for a couple of days. With the dex I always figured there was a price to pay for treating the cancer but the quality of life is very poor taking the drug.
As I said I am sensitive to most drugs. I take the Revlimid and as I am told it builds up in my system so by the time I am on the last 7 days of my 21 day cycle the nausea coupled with the days I am miserable with the steroids I have not had a " normal " day since the time I was on no meds after my transplant.
I am to see my transplant doctor on Monday and to meet with my oncologist in a couple of weeks and I think I am going to request I quit taking the dex and see where they go with it. I am encouraged to see many of you are not on the dex and I hope I can stop taking it too.
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: Severe side effects of dex (dexamethasone)?
I see a multiple myeloma specialist in Denver and he told me no dex for maintenance due to side effects. That is their standard care for maintenance unless Revlimid doesn't do the trick. I've been on 15mg of Revlimid for a year now. Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Severe side effects of dex (dexamethasone)?
If it's any consolation, I was not cancer free after my SCT either. It took the Rev to finally get me there.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Severe side effects of dex (dexamethasone)?
Excellent observations above my post. We do not routinely use dex as part of maintenance. Your symptoms could certainly be due to long term steroid use and it may be worthwhile to see a gastroenterologist for consideration of upper endoscopy (EGD). Ulcers or other stomach problems somtimes can cause pain.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Severe side effects of dex (dexamethasone)?
Hello Ed,
When I first started on high dose dex with VAD (a long time ago) my local doctor didn't know to include Prilosec or another strong antacid. I ended up in GW Hospital for a week with gastritis.
Ever since I take OTC Prilosec starting the day before whenever I need to take dex. I don't get that stomach irritation and hiccups when I take a strong antacid.
I hope this practical advice is helpful. Dex is a very powerful drug and if tolerated can work very well against myeloma.
All my best,
Dan
When I first started on high dose dex with VAD (a long time ago) my local doctor didn't know to include Prilosec or another strong antacid. I ended up in GW Hospital for a week with gastritis.
Ever since I take OTC Prilosec starting the day before whenever I need to take dex. I don't get that stomach irritation and hiccups when I take a strong antacid.
I hope this practical advice is helpful. Dex is a very powerful drug and if tolerated can work very well against myeloma.
All my best,
Dan
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Dan in Phoenix
Re: Severe side effects of dex (dexamethasone)?
I was on maintenance Revlimid with dex after my stem cell transplant in 2010. After a few months, my doctor and I decided that I would not take the dex any longer. I did not have severe side effects, just the usual inability to sleep and other minor problems. I would take an occasional Benadryl tablet to offset the rash I got from the Revlimid, and I did this for about a year before stopping Revlimid altogether. I was in remission for 3-1/2 years, but am slowly relapsing, so the plan is to go back on Revlimid and dex by summer.
Best of luck with figuring all this out.
Best of luck with figuring all this out.
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Katlyn in Colorado
Re: Severe side effects of dex (dexamethasone)?
I saw my transplant doctor yesterday and he did not say much when I said I would probably stop taking the dex except he just started to show me the next options, such as Velcade then Pomalyst, kind of saying without saying if I quit taking the dex I would surely have my numbers come up and we would be seeking other treatment as a result.
Now I am not sure if I dare quit taking the dex after 18 months. I had mentioned that I had reduced the dose to actually one 4 mg pill per week and still have these problems.
There has been mention here about taking an antacid of which I regularly take 20mg of Pepcid over the counter per day sometimes twice a day and still have this problem.
I think the dex has reduced my quality of life so severely that I wonder what will or would happen if I do stop taking the dex since I have not made the drop dead decision to stop taking dex yet. I can hardly bring myself to take the drug again except the fear of having to stop taking Revlimid and move on to Velcade. Velcade scares me to death. I want to avoid taking it as long as I possibly can.
Has anyone been taking the dex for a while like I have then stop? Did your numbers quickly go up as a result of stopping taking dex?
Now I am not sure if I dare quit taking the dex after 18 months. I had mentioned that I had reduced the dose to actually one 4 mg pill per week and still have these problems.
There has been mention here about taking an antacid of which I regularly take 20mg of Pepcid over the counter per day sometimes twice a day and still have this problem.
I think the dex has reduced my quality of life so severely that I wonder what will or would happen if I do stop taking the dex since I have not made the drop dead decision to stop taking dex yet. I can hardly bring myself to take the drug again except the fear of having to stop taking Revlimid and move on to Velcade. Velcade scares me to death. I want to avoid taking it as long as I possibly can.
Has anyone been taking the dex for a while like I have then stop? Did your numbers quickly go up as a result of stopping taking dex?
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
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