I'm new to this forum, joining today. I have been diagnosed at Mayo with Stage 1 AL amyloidosis, and my bone marrow biopsy indicated smoldering myeloma, which I understand from my doctor is common.
I begin chemo treatments this coming Monday and am concerned about one of the drugs being used, Decadron (dexamethasone). The concern is for anxiety and I already have that problem!
Has anyone out there used this and if so, would you share your experience with side effects, good and bad (and not so bad). I'll have injections, not infusions.
Thank you so much for replies.
BeckyO St. Simons Island GA
Forums
10 posts
• Page 1 of 1
Re: Decadron (dex) side effects, good and bad?
I am 51 years old, diagnosed 2 years ago this Feb. and a stem cell transplant July '13. I am also a life time sufferer of anxiety. I have been on medication for many years. I hated Dex!! The days that I was on dex I was so hyper, but I knew enough to tell myself that this was the side effect of the medication, not that I was having an axiety attack. The days on dex I could have roofed the house or paved a road, but on crash days I was horizontal on the couch. So, the days I was on dex I cleaned the house, ran errands, cleaned out my refrigerator, and talked non stop and really fast. Looking back this makes me laugh. Good luck to you.
-
Julie Phillips
Re: Decadron (dex) side effects, good and bad?
Hey Becky,
Welcome to the forum! The Advanced Search function at the top of the forum is your buddy. There are a lot of posts on Decadron (aka dex or dexamehtasone) experiences on this forum.
According to the article that follows, fewer than 20% of AL patients have concurrent multiple myeloma, so it's not that common, but it also isn't unusual.
http://www.medicinenet.com/amyloidosis/article.htm
In any case, there are definitely some folks on this forum that share your condition.
From what I understand, IV administration of dex can sometimes be superior side-effect-wise to taking it via a pill (but I'm not sure about the tradeoffs of IV versus injection when it comes to dex). The Mayo also seems to be on board with "less is more" when it comes to dex, which is a bonus you have going for you.
If dex turns out to be problematic for you, you might also want to discuss the use of prednisone with your doc. Each person reacts differently to different steroids, so there is often no telling which of these two steroids will produce less side effects.
The bottom line is it pays to be vocal about any issues with your doc so that he/she can work with you to help minimize any side effects.
I'm assuming you aren't just starting treatment with dex alone, and there is likely some other drug(s) in the mix?
You are in great hands at the Mayo....
Best of luck to you.
Welcome to the forum! The Advanced Search function at the top of the forum is your buddy. There are a lot of posts on Decadron (aka dex or dexamehtasone) experiences on this forum.
According to the article that follows, fewer than 20% of AL patients have concurrent multiple myeloma, so it's not that common, but it also isn't unusual.
http://www.medicinenet.com/amyloidosis/article.htm
In any case, there are definitely some folks on this forum that share your condition.
From what I understand, IV administration of dex can sometimes be superior side-effect-wise to taking it via a pill (but I'm not sure about the tradeoffs of IV versus injection when it comes to dex). The Mayo also seems to be on board with "less is more" when it comes to dex, which is a bonus you have going for you.
If dex turns out to be problematic for you, you might also want to discuss the use of prednisone with your doc. Each person reacts differently to different steroids, so there is often no telling which of these two steroids will produce less side effects.
The bottom line is it pays to be vocal about any issues with your doc so that he/she can work with you to help minimize any side effects.
I'm assuming you aren't just starting treatment with dex alone, and there is likely some other drug(s) in the mix?
You are in great hands at the Mayo....
Best of luck to you.
Last edited by Multibilly on Thu Jan 29, 2015 10:27 pm, edited 1 time in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Decadron (dex) side effects, good and bad?
Let me also say welcome, and add that you've gotten some useful advice already.
In addition to the forum search function that Multibilly mentioned, you also may find this posting helpful: "Useful links to existing forum discussions (about treatments and side effects)".
It has a long list of links related to treatments and side effects that will take you straight to most forum discussions on specific topics. Here is the link for Decadron, for example, which brings up more than 100 different forum discussions about the drug!
Good luck!
In addition to the forum search function that Multibilly mentioned, you also may find this posting helpful: "Useful links to existing forum discussions (about treatments and side effects)".
It has a long list of links related to treatments and side effects that will take you straight to most forum discussions on specific topics. Here is the link for Decadron, for example, which brings up more than 100 different forum discussions about the drug!
Good luck!
-
JimNY
Re: Decadron (dex) side effects, good and bad?
Hi Becky,
JimNY, Multibilly and Julie have given you some really great advice and links.
We all learn so much from the postings on the Beacon. I am now taking dex again, for the second time. The first time, during induction chemo almost six years ago, I may have been on a dosage of 40 mg per week, although I did not keep a record of that. At any rate, I did not take anything to ameliorate the effects of dex then, and had sleeplessness that lasted for about two days at a time as I recall. Needless to say, this was not good for my mental or physical health. I was on dex for four months then, and was very relieved to quit that drug.
Recently, I have relapsed from myeloma and am taking 20 mg of dex per week as well as high-dose Revlimid. My dex dosage is in pill form. This time, I am taking a sleep aid called trazodone, for two nights – the day of and the day after the pills. This has made a big difference, and I am now not going without sleep. I do feel 'hyper' for a couple of days after the dex, and also get quite flushed in my face about three days afterwards. On the fourth day, I get very tired, which must be the 'crash'. Similarly to in 2009, I have now been on the drug for four months, but am handling it better this time.
From suggestions of people posting on the Beacon, I am now taking the dex at night, which means that my first effects of the dose are when I am asleep. So I think that helps too. Maybe if it is by injection, you could get an appointment for that later in the afternoon?
Hope that helps and that your treatments for amyloidosis are very successful.
JimNY, Multibilly and Julie have given you some really great advice and links.
We all learn so much from the postings on the Beacon. I am now taking dex again, for the second time. The first time, during induction chemo almost six years ago, I may have been on a dosage of 40 mg per week, although I did not keep a record of that. At any rate, I did not take anything to ameliorate the effects of dex then, and had sleeplessness that lasted for about two days at a time as I recall. Needless to say, this was not good for my mental or physical health. I was on dex for four months then, and was very relieved to quit that drug.
Recently, I have relapsed from myeloma and am taking 20 mg of dex per week as well as high-dose Revlimid. My dex dosage is in pill form. This time, I am taking a sleep aid called trazodone, for two nights – the day of and the day after the pills. This has made a big difference, and I am now not going without sleep. I do feel 'hyper' for a couple of days after the dex, and also get quite flushed in my face about three days afterwards. On the fourth day, I get very tired, which must be the 'crash'. Similarly to in 2009, I have now been on the drug for four months, but am handling it better this time.
From suggestions of people posting on the Beacon, I am now taking the dex at night, which means that my first effects of the dose are when I am asleep. So I think that helps too. Maybe if it is by injection, you could get an appointment for that later in the afternoon?
Hope that helps and that your treatments for amyloidosis are very successful.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Decadron (dex) side effects, good and bad?
I too took trazodone during my dex days, it really helps. The dex is a gift from God. It gives you so much energy, I painted the entire house during treatment. 
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Decadron (dex) side effects, good and bad?
I've been on IV dex for over two years. I was extremely fearful, as I was in a high anxiety state of mind from the diagnosis. I usually am not an anxious person. I asked my oncologist to give me a lesser dose prior to starting treatment. My treatment was 12 mg IV twice a week instead of 40 mg twice a week for the 8 months of induction treatment.
Although it made me irritable wired and unable to sleep, I was able to combat most of the side effects using Benadryl (diphenhydramine) and half on 1 mg of Ativan (lorazepam) to sleep the first two nights after getting the dex.
My maintenance involves dex 24 mg IV . I really feel the side effects diminishing. My oncologist says some people adjust to it the longer they are on it. It's taken me two years to feel I am not as wired. I kind of miss that extra energy I would get and be able to do some great workouts at the gym and get my house all in order.
So dex has it's benefits. If you don't tolerate it well, ask you oncologist to lower the dose or switch you to another steroid.
Although it made me irritable wired and unable to sleep, I was able to combat most of the side effects using Benadryl (diphenhydramine) and half on 1 mg of Ativan (lorazepam) to sleep the first two nights after getting the dex.
My maintenance involves dex 24 mg IV . I really feel the side effects diminishing. My oncologist says some people adjust to it the longer they are on it. It's taken me two years to feel I am not as wired. I kind of miss that extra energy I would get and be able to do some great workouts at the gym and get my house all in order.
So dex has it's benefits. If you don't tolerate it well, ask you oncologist to lower the dose or switch you to another steroid.
-
torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Decadron (dex) side effects, good and bad?
I take 40 mg weekly on Fridays and today my wife asked me if I slept good and I said, actually, no, I was up until 4 a.m. watching Netflix and then fell asleep and, dig this, I had complained about laryngitis a few times, and she said why does your voice change the day after you take the steroids. Go figure – she noticed and I didn't.
-
ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: Decadron (dex) side effects, good and bad?
So many thanks to all of you who responded to my question. I'm taking 20 mg orally once a week, then Velcade twice a week by injection.
My problem with the dex, along with the common ones each of you has told me about, is fluid retention. I've gained 8 - 10 pounds (3.5 - 4.5 kg) in two weeks.
Have any of you experienced this?
Really concerned, but my doc says "we'll check it again on the 19th." I'm also taking 40 mg of Lasix (furosemide) daily.
I have experienced the same other side effects as all of you.
Thanks so much in advance for your replies.
My problem with the dex, along with the common ones each of you has told me about, is fluid retention. I've gained 8 - 10 pounds (3.5 - 4.5 kg) in two weeks.
Have any of you experienced this?
Really concerned, but my doc says "we'll check it again on the 19th." I'm also taking 40 mg of Lasix (furosemide) daily.
I have experienced the same other side effects as all of you.
Thanks so much in advance for your replies.
Re: Decadron (dex) side effects, good and bad?
Just a note about your reference to 40 mg of Lasix. My mother (who is currently on Velcade and cex) had severe ankle and foot swelling prior to and at the beginning of multiple myeloma treatment.
She was prescribed 40 mg by her cardiologist. Her multiple myeloma oncologist said 4 0mg was so low it really wouldn't do anything.
The swelling got even worse. My mother said her feet and ankles felt like they were going to explode. The oncologist and cardiologist worked together in deciding to give her a one time IV infusion of Lasix and then put her on a daily regiment of alternating 1 day 40 mg Lasix, 1 day 80 mg Lasix. This daily alternating 40/80 went on for about 2-3 weeks. That did the trick!
The swelling now is minimal and very manageable. Now she is just on 40 mg a day.
She was prescribed 40 mg by her cardiologist. Her multiple myeloma oncologist said 4 0mg was so low it really wouldn't do anything.
The swelling got even worse. My mother said her feet and ankles felt like they were going to explode. The oncologist and cardiologist worked together in deciding to give her a one time IV infusion of Lasix and then put her on a daily regiment of alternating 1 day 40 mg Lasix, 1 day 80 mg Lasix. This daily alternating 40/80 went on for about 2-3 weeks. That did the trick!
The swelling now is minimal and very manageable. Now she is just on 40 mg a day.
-
lindahyemoog - Name: Linda
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 87
10 posts
• Page 1 of 1
Return to Treatments & Side Effects