Northern Lights: Sandcastles And Dexamethasone
Last month, my husband and I went to Vancouver Island to attend my mother’s 90th birthday celebrations. We had a lovely time at an outdoor garden party in the community garden where she volunteers. We teased her that she is tracking Queen Elizabeth, since they are now the same age. We had greetings sent out from the Prime Minister of Canada, the premier of British Columbia, and my mother's provincial representative (member of the legislative assembly).
The following day, we drove down to Parksville Beach to see a sandcastle competition. The sculptures made of sand were absolutely beautiful and built with so much attention to detail. Of course, the sand sculptures are subject to the elements (wind and rain) and will crumble and fall a short while after they are made. The sculptures were set well back from the shoreline itself, and surrounded by a temporary fence, which at least protected them from the high tides.
For some reason, the sand castles reminded me of my experiences with dexamethasone (Decadron). I have been taking 20 mg of dexamethasone once weekly, in combination with Revlimid (lenalidomide), for the past two years. I take the dex in the middle of the week since that works best for my schedule.
The combination of the two drugs is working well in keeping my multiple myeloma under control.
It seems, however, that my moods and energy surge up for a few days and then come down again, just like the impermanent sculptures of sand. In a sense, the dex builds me up, but then crashes me down again.
For me, the dex side effects have nevertheless been relatively manageable as long as I keep certain thoughts in mind.
Firstly, I get very talkative while on the drug. I am already quite ‘chatty,’ but the dex seems to enhance that tendency. I therefore try not to ramble on too much, both in person and online.
I also avoid doing certain things on my computer or other devices, such as downloading apps, or responding to requests to upgrade programs. Once I accidentally deleted many apps from a cell phone by clicking on the delete function by mistake.
I have also decided that I rather not drive much when I’m on dex since I worry that my reaction times might be affected by it.
The day after I take the drug, I am not very good at detailed work. I therefore prefer to dash around and do housework, get outdoors and garden, go shopping, or go for a long walk. I can get a lot of steps on my fitness tracker on a 'dex day.'
The physical effects I experience with dex include flushing of my face and neck and sleeplessness. I take a sleeping aid two nights a week to help me with the sleeplessness. I think that it not only helps me to sleep but may also decrease my irritability, and impatience, which I experience during my dex days and is difficult for the people around me to cope with.
I also puff up a bit from the dex and can have swing in my weight of five pounds within a week. After a while, I got used to that happening. At the same time, I try not to overeat while on dex, which proves to be difficult sometimes because the dex can make me hungry.
Last year during the choir season, I had an ongoing run of low-grade colds and sore throats. I was also hoarse and had to rest my voice for several weeks. I have read that these problems also can be side effects of taking dexamethasone.
After two to three days, the dex crash occurs. For me, it manifests itself as tiredness. I sometimes wonder, "Why am I so sleepy on a Saturday morning?" I just feel like I am getting lazy in my old age, but then I realize that it is the dex wearing off.
By the next day, it is as if the winds of change have blown the dex away from my system, and I have a few days of normalcy again until the next cycle.
What are your experiences with dexamethasone?
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The quotation for this month is an excerpt from the poem "Auguries of Innocence" by William Blake (1757 - 1827), an English poet, painter, and printmaker: "To see a world in a grain of sand and heaven in a wild flower, hold infinity in the palms of your hand and eternity in an hour."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
You've pretty much said it!
Nancy,
My experience with dex mimics yours completely, with a few additions. I have been off it for awhile, but will soon be starting up again due to a recent relapse. I'm not looking forward to it. I ended up on 2 blood pressure meds last fall due to dex and have a third one that I take about 3-4 days after dex when my blood pressure spikes and I gain about 5 pounds. I have bilateral cataracts probably due to dex or a combination of that with my age. I have experienced a hoarse voice from the beginning and read that it is a side effect - not sure how common. I try to avoid doing any paper work around my dex days as I make many mistakes. I find the crash makes me tired and depressed. What a roller coaster! My mom recently turned 88 and will probably outlive me!
Diane
Thanks for another interesting article, Nancy. It seems to me that it is very important to get a balanced combination of Revlimid and dex and not to just accept whatever the doctor orders.
After 2 years in remission, I too needed to resume treatment. I was prescribed Revlimid at 25 mg and dex at 40 mg. For 3 months, I struggled with this combo and experienced brutal side effects. I contacted my nurse coordinator and in consultation with my doctor they lowered my dosage to 15 mg Revlimid and 20 mg of dex. I take the dex on Saturday morning because the added energy boosts my ability to enjoy social interactions in the evening.
Unlike you, I am in my seventies and did not get a transplant; however, it is very important to find the right combination and to minimize the side effects.
Hi Nancy,
I don't have multiple myeloma, I have amyloidosis. The treatment is very much the same. Amyloidosis is a rare disease, so there is not much information out there. Hearing about other people's experiences is helpful.
I enjoyed your description of the way dex works for you because it's the same for me. I take Velcade in shot form. I have not had a transplant.
I am in my 70s and I am told I will have to take this weekly for as long as it continues to work, then it's another story. I have been doing the treatment since January 2016.
My husband is on Revlimid alone at this time but dex may be added soon as his IgA numbers are creeping up. During induction therapy, previous to his transplant 2 years ago, he did experience several similar symptoms from the dex he took on Velcade days.
I had to smile when you mentioned the "chatty" times. At the beginning of engraftment about day 10, Bill experienced some engraftment syndrome issues. One of the remedies was prednisone, which was reduced each day for 10 days. Chatty does not begin to describe his sudden increase in sharing thoughts. He even critiqued, non stop, the commercials on TV. I made it very clear to our doctor that he best get off the med asap as it was clear in our 38-year marriage that I was the talker and was not prepared to relinquish my role. Thankfully I regained my rightful position.
Happy Belated to your mother. How wonderful to share the year with HRM. I always enjoy your articles feeling that Canadian connection way over here on the East Coast.
Thanks, Nancy, for such a great article. I was on 40 mg of dex in induction treatment and had a similar reaction. Then I had my stem cell transplant with a 2-year remission. Relapsed last December and started on 10 mg Revlimid and 40 mg of dex. Well, my body reacted differently. My whole body swelled including my tongue, throat and nasal passages. My oncologist didn't want to give up on dex so I took aderax every 8 hours 24 hrs before dex and three days after for 6 months.
The devil dex, our favorite drug!
Thanks everyone for your thoughtful comments! So many of us myeloma and amyloidosis patients are affected by this drug, so we are never alone in this.
Trish: You are not the only person with amyloidosis who reads the Beacon; certainly many here know about the disease. Julie: Thanks, and I like your new picture! Diane: Seems we were on the same page about many of dex's side effects. And Michael: Good to know that you were able to get your treatments to a level more tolerable for you.
Nadine: That was really funny as you described the side effects of dex from the caregiver's point of view! The talkative aspect is difficult to manage sometimes, and good luck to Bill if he needs to take the drug again.
So sorry to hear about the awful reaction to the steroid, Sandy. Hope it was worth it medically to go through all of that which you describe.
And Ron, are you planning your 'dex days' around your cycling training schedule? It is a cyclical set of side effects after all (excuse the pun!).
Nancy,
Currently I take 40 mg of dex once every two weeks on the same day as I get my Velcade shot.
I generally schedule the Velcade for Wednesday afternoons. I wait until around 10 pm to take my dex so that I can get some sleep on Wednesday night. I find that it takes a few hours for it to really kick in, so I can usually sleep well that first night. Thursday evening I normally only get a couple of hours of sleep and it is fits and starts. I avoid riding on Thursday and Fridays. Thursday evening I have choir practice starting in the fall, so that works out well. Like you, I get "amped up" that first day and my HR is elevated, so I like to give it a full 2 days before I try and do any strenuous bike riding. That has worked well for me as by Saturday morning the worst of the effects have worn off.
I guess one needs to be sure that the level of dex is compatible with their lifestyle and tolerance. Will dex extend your life span or negatively affect your quality of life? If you are having bad side effects, question you physician about the level of medication. It seems to me that 40 mg is too much, particularly if you are on the wrong side of 70.
As a health care worker, it is incredibly helpful to read about your, and your commenters', experiences of taking dexamethasone. Thank you. This information will help me be a better nurse.
I have no idea what you're talking about. I'm sitting here on my dex night, 2:59 a.m., reading sad world news, cleaning up files on my computer and, every few seconds, scaring the cat resting on my lap with a strong hiccup.
Thanks for the additional comments. Ron, you are really organized! Isobel, I am glad to hear that the info and experiences about this drug may help you in your work. Mark, I won't let myself work in the middle of the night when I take dex. I take trazadone, a prescription drug, to help me sleep. You could ask your doctor about that.
Michael, your comment reminded how the standard dex dose used to be 40 mg x 4 days a week, but studies found that a lower dose (40 mg once a week) was actually actually better, and led to better patient outcomes too.
The dosage I have had, as a senior, has been effective, and still allows me to do my part time work, exercise daily, and spend lots of time with our family. Now that there are three grandsons under the age of two, my husband and I like to do a lot of babysitting! I doubt that this would have been possible for me two decades ago. Cheers and have a nice weekend.
Nancy,
Thank you for making me feel "normal". While 40 mg a week makes me irritable, ravenous, whiny, obsessive, overly talkative, and sleepless, it does not compare to the mania I experienced while getting 40 mg once a day for 4 days a week.
I understand that dex has an anti-myeloma effect, but there are days that I wonder if everyone around me will survive my sometimes bizarre behavior. I truly feel like I am someone else when taking dex.
I have had similar changes in my affect with other medications, but they are meds that I only need to take for a short time, or there are other alternatives available. The best part of being on dex is being totally pain free. Hopefully they will find a medication that will take the place of dex without the side effects.
Desc deb b,
I am sorry to hear of the negative side effects that you are having when taking 40 mg of dexamethasone! It seems that there is some variation in the dosage. Some people (like myself) have taken 20 mg a week, some 40 mg every two weeks, and maybe other variations too? My doctor and the oncology nurses always ask me if the drugs are 'tolerable', but I could only manage the dex with the understanding of the people in my life! When I was first diagnosed and taking Velcade plus dex, I think that I started on 40 mg, but I could not handle that dosage and it was lowered to 20 mg. I still got good results from the Velcade.
Anyways, it is a drug that not many people are taking outside of the myeloma world. So we are fortunate to have the Beacon, which gives online information and support, so that we can discuss these issues. Good luck, and I am glad that you are pain free while taking dex.
Nancy,
You are so right about the dex crash after a few days! I took dex Friday evening so, if this cycle follows the usual path, tomorrow will be my "low" day. And as for driving on dex days: I don't think my reaction time suffers, but my tolerance for other drivers certainly does!
Thanks Trevor, I also worried that if I were in a car accident when on dex it might have a bearing on my auto insurance, since, in my opinion,I am a little impaired while taking it! That might be just me though.
After taking dex for two years, I got used to the weekly side effects, and the low day certainly occurred too! I planned as to when to take it so that I still had half the work week to be relatively normal, and recovered by Saturday afternoon! But it threw me off for 2-3 days, so I really sympathize with other people who need to take dex to enhance the effects of the other chemotherapy drugs. On reading up on dexamethasone in Wikipedia, I learned that it is used for other conditions, even in brain cancer to hold down edema, but myeloma was mentioned as the hematological malignancy it is used for.
Right now I am off of chemo meds for 3 months, and I will explain about that in my next column.
Happy Canadian Thanksgiving! To all readers of the Beacon, sending you warm wishes for Thanksgiving. We have gratitude for our blessings in life, and hopes for a good year ahead.