Manhattan Tales: Steroid Adventures
In my last column, I described how a couple of incidents, one on the subway and one at work, during the first few months of steroid and Revlimid (lenalidomide) treatment had given me hints that more than physical effects were going to be involved in my multiple myeloma treatments.
After five months on chemotherapy, it seemed that, while my medicines were apparently going to control the myeloma – I was approaching “very good partial response” – I could tell that the chemotherapy was having profound effects on me emotionally.
Continuing to work in a steam cooker job seemed to pose a lot of risks.
I had focused on and was closely monitoring the physical side effects of the chemotherapy – which were many. Nights after taking the steroids, I was often up till 3 a.m. Peripheral neuropathy was getting worse, even after the Velcade (bortezomib) stopped. Fatigue was intermittent, but luckily I was an excellent nap taker.
But I hadn’t been warned of or prepared for the psychological effects. In June, just six months after the diagnosis, I decided I had to retire. A few weeks after a stem cell harvesting, I retired. I was 63.
In the two years since the diagnosis, the psychological effects of the medicines, far more than multiple myeloma or the retirement, have been the greatest challenge for me.
Steroids make me sociable and chatty during the 12 hours after taking them, but when they are wearing off, they make me unpredictable and pretty grouchy to live with. And they can make me aggressive and impair my judgment as well.
As I mentioned, I yelled at a colleague at work. I’ve yelled at aggressive drivers (I never drive in Manhattan myself – I decided many years ago that it was bad for my soul). I’ve yelled at food delivery bicyclists who ride on the sidewalks with heavy electric motors. I managed to enrage a crazed subway passenger in a crowded car.
Most dramatically, when I once motioned with a hand gesture to a middle-aged bicyclist on a pedestrian path to slow down, I must have also enraged him for he slapped me in the face as he passed by!
Without thinking, I ran after him and grabbed him off the bike. We both fell over, and his teenage children who were following on their own bikes started yelling at us to cut it out.
My poor wife was horrified. Indeed, what in the world was I doing? Three broken ribs later, I understand my instinctive reaction, but what idiocy!
I think I now have my emotions under control – I must look pretty sane at least, as tourists are constantly coming up and asking for directions.
But I do think I was greatly under-counseled on the psychological dangers of the steroids. My doctor had switched me from dexamethasone (Decadron) to prednisone, and while it seemed to me to have a much gentler impact on my body, the emotional effect was apparently quite insidious.
These may not be anabolic steroids that body builders and athletes take to improve performance, but ‘roid rage’ can occur even to those not on anabolic steroids!
I have developed some techniques for handling these side effects, which I will describe in a later article.
At a minimum, each day I spend a few minutes trying to “tune in” to both the emotional and physical state of my body.
Leaving the house with a smile rather than a scowl, regardless of how I feel, is always a wise thing to do.
But my myeloma journey is going to be (I hope!) a long course, and a multitude of techniques are on the list to cope.
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Stephen, thanks for the heads up when the time comes for me. Unfortunately, I am 49 with a wife and two school age kids and don't have the luxury of simply retiring. I have to work to maintain health insurance for myself and the family and to pay the bills. I hope your experience is not universal and that others on this site were, and are, able to work and function. I am a public interest attorney who goes to court daily and I pray that I will at least have some semblance of normalcy or what is the point of it all? Hopefully, others took to the dex better?
Thank you Stephen for your article. I was recently diagnosed with MM and have not begun therapy. I have changed my diet to vegan and I am juicing for 75% of my nutrition. My doctor has prescribed Revlimed, Dex, and Zometa. Quite frankly I don't have a lot of peace about it. I wish there were a clinical trial available to me because I could at least feel as though I were contributing to bringing another drug to market. I too am retired and my only medical insurance is medicare. I don't believe I can qualify for a trial because I have hepatitis C and have had it since a blood transfusion in 1970. I'm glad to hear you are making progress. I can see me reacting to situations that you so candidly described. I look forward to your future articles.
Hi Stephen...being on dex was a v. interesting experience for me too. I only needed it thus far for 3-4 months, thankfully. Seems like you take very good notes, or 'journal' your days. That was recommended to me as part of the 'journey' we undertake. A good coping mechanism to be sure.
Thanks Stephen.
What a journey. I am glad you got a handle on your "roid rage". You are very brave to write about all of that as I have a feeling that many people would not want to. It's unfortunate you had to suffer some injuries from the side effects of the Dex. But I guess it could have been worse. I am a 40 yo "smolderer" with three kids 10,12,14 and I am already a bit "high strung" so if and when the time comes for treatment I hope I have a better reaction than you did.
Thank you for sharing and for your honesty.
Best of Luck
Art
Hi Stephen! Thank you for your column. It is a VERY important heads up. And I wanted to confirm that you are far from alone in having psychological reactions to the steroids. I am 16 years into my myeloma journey, and only in the last year have I agreed to take a VERY low dose of dexamethasone, 20 mg a week, split across 2 days, which is half what is prescribed as the typical "low dose" option! I take that along with an unholy cocktail of other drugs. Once, very early on in my years with MM, I was introduced to dexamethasone, and immediately became a raving, manic, sleepless, poor impulse control, sometimes downright mean, WAY too chatty person. I decided immediately that it didn't jibe with my insistence on quality of life, and politely declined any further use of the drug. With the exception of the stem cell transplant protocol, I have refused up until the last year, when my disease reached a point where refusal of anything just isn't an option. I guess I just want to make two points. One, the psychological side effects are not rare. I have spoken to literally dozens of fellow MMers across the years who experience the same. And, two, we are in control as patients. We have options. Our bodies and lives are ours. If someone is having a really awful reaction to a drug, they can ask that the dose be lowered, or switch to another steroid to see if it has less side effects, or talk to their doctor about seeing how the MM numbers look without the drug. I am one of those "squeaky wheel" patients. I have survived 16 years by being a bit of a pain. It is really under rated as a survival skill!
And I love every day I've wrestled back into my line up. Best wishes, Stephen, and to all of you out there finding your way with this challenging disease. -Marty
Hi Marty, I liked your comment and the fact that you are a great advocate for yourself. Where have you been treated and, being a long term survivor, maybe you could provide us newbie's some guidance.....maybe they will let you do a column....Boris???? Thanks. Terry L.
Thanks Stephen! Love this thread! Just CHATTED UP my hubby big time(can book club really be THAT exciting?) & yes, I had taken my "chemo cocktail" this morning. Mine happens to contain lenalidomide, cyclophosphimide, dexamethasone, gabapentan & aspirin - sound familiar?
A shot of neupagen tonight, and then I calm down for a week with mainly lenalidomide & aspirin.
Of course, I insist on taking a variety of supportive vitamins supplements. My oncologist is very supportive of me doing anything supplemental like that as long as I run the idea past her before I start.I did the juicing thing, but I was disappointed in the juicer I bought - guess you have to buy the most expensive one. I sure do wish there were truly easy-clean versions around too.
Hi Stephen!
Great write up, especially the detailing of steroid impact/transgressions personality changes.
As others have mentioned, many of us have experienced these side effects. I too get hyperfocused, very gregarious, and extremely chatty. Nowadays, when I enter the infusion room, I tell the other patients...it's a steroid day..and I will be talking a lot, I say, excuse me but it is the dex. Most are kind and enjoy the convo. Some close their eyes and then I have to hijack one of the nurses when they come in and chat her up! lol
I have not been grouchy, but I can get aggressive as you mentioned yelling at other drivers, typically the taxi driver cuts you off hoppomg into the left lane and then turn on their blinker...arrrgh!!! That manuever just singes my buns.
Steroid rage is real independent of it being catabolic/anabolic because both have serious CNS effects wheres the true difference is that anabolic build muscle and the catabolic waste muscle both types create unstable mental changes. Or as you aptly put it 'roid rage'....
I agree with Marty in that regard, dosage can be lowered. And dexamethasone is ten times as potent as prednisone. Typically, the docs don't emphasize how the steroids will impact you mentally because , in their defense, there is such a wide spectrum of response in individuals. Although some folks can have psychotic breaks, many don't. Because the docs don't want to influence your responce the descriptors of choice used are somewhat innocuous. Like insomnia, it ain't insomnia the brain won't shut down and you become hyperfocused as the brain just races on its on marathon or the other one they use anxious, nah..it is aggression and then the crashing. None of this truly describes what you will go through until it happens and you realize you are on a rollercoaster!!
Good thing we have loved ones though to warn us of when we are in the ZONE so we don't alienate everyone we know, just that those we loved most wind up enduring our steroidally mania moments.
Ed, BTW..there are clinical trials available for the newly diagnosed. You might one to call MaryAnnYancey at NIH (google her name on Beacon site) and she will be able to tell you if you match the criteria. That's on East Coast and on West Coast their are trials in Seattle,http://www.seattlecca.org/clinical-trials/multiple-myeloma-NCT01335399.cfm
You likely can find several others as well, the IMF, is also a good site to look for trials and will likely show other areas/regions of the country which could be a better location for you.http://myeloma.org/Main.action
Good Luck ED!!
Marty I am with you all the way on being your own most powerful patient advocate and knowing it can lead to being wrestled back in line at times, but there are many more times you are out of the line for all the right reasons.
My experience with these drugs was a bit different. I took them for several years, but the steroids just made me feel chatty and enegetic. I rather enjoyed the feeling. I was always thankful that I felt like that instead of being sick after my chemo treatment. So sorry that it was so rough on you.
Thanks to all of you for sharing your experiences with dex/steroids.My quiet husband, not only yelled at me, but our sweet 12yr old dog, after his first ingestion of 9 steroids and had been up most of the night.I had expected some outbursts, but the dog didn't. The next day, I received this article.I asked my husband, to please sit down and read it, so he would understand a little better.Pippen,our SHI TZU, is always forgiving.Our oncologist suggested an anti-histime, along with the steroid.Any thoughts on other things to help, with this nasty drug?
Perhaps the message to take from these tales of steroids woe is to try be "mindful" while you are on them-- steroids are powerful medicines, and they need to be respected. They were personality altering and mood altering for me. I'm still chagrined by my outbreaks, drug induced or not -- perhaps I am just a little bit comforted to know that I'm not alone in my drug induced mood changes. Now that I'm prepping for the stem cell transplant, I'm off steroids (I hope for a very long time) and, while no one would describe me as mellow, I'm certainly sleeping better!
Your discussion has been helpful to me as doctor wants me to start Melphalan and prednisone soon. I can not seem to find dosing of prednisone and how many days it is taken. Info would be appreciated.
Have any of you tried Medrol. 16 mg is about same as 20mg of prednisone. It was reccomended to 3 people in our area by a specialist in Los Angeles. He experiments more than most oncologists with therapies and only sees myeloma patients. I was not able to tolerate Dex because of very irregular heartbeats when I got to 20 mg per week. I had tons of other side effects including labile moods and meanness. With Medrol taken every other day at different times last two years, the only side effects I notice are mild pm headache and facial flush on off day. I worry about any steroid causing thinning bones especially after I had atypical femur fracture after 7 years of Zometa. Has anyone else heard of these atypical fxs with Zometa.? i am in a support group of 150 people who have had fractures but they were all mostly taking Fossamax
You give me such an insight and makes me realize that I am not the only one going through this. I would be on that steroid energy and felt like i could take on the world. Well I would . I would go outside and garden or do something due to the energy, but I paid for it later. My body would hurt and the cramps were more severe and i would be in bed cause i would be so drained. My moods did in fact change and thanks to you I now understand why. I was very intolerant of everything and had an attitude. Since being of them almost a year I have noticed a change. I still feel so very tired and have no energy and have trouble sleeping. Hopefully in due time I may go back to a somewhat normal life. God Bless you and all of you battling MM. Keep the faith and keep fighting.
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