Myeloma Rocket Scientist: Dex – Can’t Live With It, Can’t Live Without It
The world may not be ready for the 500th column on the joys of dexamethasone (Decadron), but today is a dex day for me, so here it goes anyway.
I have a fair bit of experience with the corticosteroid dex, starting with my myeloma diagnosis back in 2006. My initial treatment consisted of thalidomide (Thalomid) and dex, and I was on the two drugs for about eight months. This combination did well, getting me into complete remission before my autologous stem cell transplant. I had the then-current dosage of 40 mg of dex for four days out of each of the first three weeks of the four-week treatment cycle, followed by a week off. You really are in no doubt when on this regimen that you are taking strong medicine.
After my transplant in early 2007, my IgA level started getting uncomfortably high again in late 2013 (my kappa light chain numbers had also been creeping up for a while longer.) So, in January 2014 I started on Revlimid (lenalidomide). Unfortunately, it became clear that Revlimid by itself wasn’t controlling my IgA and kappa readings. Consequently, we added dex. After a few dosage modifications, we settled on 40 mg of dex one day in the four-week cycle plus the antibiotic clarithromycin (Biaxin), to be taken throughout the week of the dex dose.
There are different theories about what exactly clarithromycin does when it is used with other drugs to treat multiple myeloma. What I was told by my doctor was that clarithromycin slows the breakdown of dex, making it last longer and thus making it more effective. The dex side effects definitely last longer than they used to without clarithromycin, which is of course a little unpleasant. However, if the clarithromycin can keep me on only a single monthly dex dose, it is a good tradeoff. And indeed, my IgA and kappa light chain numbers have been slowly creeping down since introducing this combination.
A clue that 40 mg really is a high dex dose is the fact that it comes in 4 mg tablets, which to me seems to be the dose that people take for other ailments. Myeloma patients, however, end up having to take 10 tablets at a time, which can feel uncomfortably like poisoning yourself. The tables are also uncoated and quite bitter. I take mine with a large glass of chocolate milk to help mask the taste.
Response to any drug is extremely individual, so my experiences may not be typical.
The first side effect that I get is that, several hours after taking dex pills on a Saturday morning, I start feeling clammy and then go into an attractive shade of yellow all over my body. I presume that dex reduces the circulation to the skin. I don’t usually spontaneously get offered the senior discount at restaurants, but it has happened several times on dex days. It reminds me of the film “The Day of the Jackal”, where the main character eats a small amount of cordite to make his skin go gray so that he can impersonate an elderly retiree. The effect is quite similar.
On Saturday night, I get serious insomnia, and usually don’t end up going to bed until around 3 or 4 a.m., as I know that I wouldn’t be able to sleep if I went earlier. I watch a lot of TV; tonight it is going to be “All the President’s Men”, as I read that this is its 40th anniversary. The next day I get up late after a disturbed night and am quite flushed, presumably because circulation to the skin is now in overdrive. I sometimes now also get hiccups on this day; I don’t remember that from my induction therapy days.
It is possible that I become just slightly (ha!) tetchy as a result of dex, with Sunday being the worst. I told my oncologist about this observation after a few cycles. He said he was surprised to hear it from me, as the patient isn’t usually aware of it. Instead, he usually hears it from the spouse. I had to admit that I only knew it because my wife had mentioned it!
The way it feels to me is that I’m the same as ever, but the world is suddenly full of annoyances. It is perhaps extreme when driving to beep at someone for inconveniencing you by turning in front of you without first signaling, but I have been known to do that on dex days. It would also not be a good day for keeping calm and polite under pressure at work, which is why I take the dex on the weekend.
Sleep on Sunday night is again pretty disturbed, so Monday and Tuesday can be hard to take just because of sleep deprivation. Also, I sometimes feel pretty “low” in spirits on Tuesday, which I presume is some sort of dex withdrawal slump. During my last treatment cycle, this dex withdrawal slump was combined with getting over jet lag, which was a lot of fun.
Finally, though, by Wednesday I feel pretty much back to normal.
One thing that puzzles me is how I managed to take this same high dex dose for four days per week during my induction therapy. It certainly was no picnic, but I sometimes think I coped with it better back then. Of course, I was younger. Also, I started out really sick, so even if the dex made me feel crummy, I was comparing things to a very low baseline. What a contrast to now, when I feel pretty good on non-dex days, so dex days presumably seem worse in comparison. But I do sometimes wonder if I will get to the point where just hearing the word “dex” makes me unwell!
Still, four sub-optimal days out of 28 isn’t a bad price to pay for keeping myeloma at bay. Plus, I get to watch lots of old films on TV.
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
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I call the post dex days my green day, followed by my red day. There was a comedy show called the Red Green show. Well, my complexion is the the reverse, the Green Red show. Enjoy the benefits of dex and the seniors discounts.
My frustration is that the doctor did not give me enough info as to the possible side effects. Talking fast and sleeplessness hardly scratch the surface. All patients should be put on leave from work when treatment first starts, just in case.
My children were in middle school when I was on my dex regimen. They always say they learned the ugly side of steroids at a young age!
Trevor - I find interesting the fact that your myeloma journey is some what similar to mine (and I also worked in the aerospace industry), time wise, except for the fact that you have had a stem cell treatment and I have received no further treatment since 2005 after the initial treatment of thalidomide and dex for 10 months. I am wondering what your age is. I am 77, soon to be 78, and so far my blood tests every 6 months are still showing I have the disease but below the level requiring additional treatment. Liked your article. Best regards, NG
Thanks, Trevor, for a very worthwhile article. All the more valuable because doctors don't always seem to inform patients well about the side effects of dex. I was surprised to hear you drive a car on your dex days, as my dexamethasone day is Wednesday and I don't feel safe to drive until about Sunday, and that's only for relatively short distances. Norma makes a very valid observation about the need to be off work, as I know I'd be unsafe working for several days after a 40 mg dex dose. For a while I even found it difficult to concentrate enough to read for a few days after taking 40 mg. Fortunately my haematologist wrote me off work while on this treatment.
Could not have said it better Trevor. I am on a similar regimen. Post dex days are the worst. Good luck to you. My IgA levels are going down, so can't complain too much.
Trevor, have your doctors considered distributing your dex? I've been taking 20 mg of dex every two weeks on the day and the day after a subcutaneous Velcade injection as maintenance therapy (along with 50 mg thalidomide daily) for the past two years following an autologous stem cell transplant. Exercise (40 minute walk) helps attenuate the hype most of the time.
Trevor: I find myself quite similar to you and others. When I was on dex 40 mg once a week for 16 weeks, it took a couple of weeks to figure it out. I took it on Thursday with Velcade. Did not sleep most of night and Friday was a write off, was extremely sensitive and cried all day. Don't look at me cross eyed, I was gone. Saturday was complete moody, don't talk to me I would bite your head off. Sunday slept all day, Monday was a bit better Tuesday and Wednesday were good only to start all over again. After SCT in 2014 I had some doses, I am in remission, no meds, only bone marrow biopsy every 4 months. I was lucky to go on sick leave when I was diagnosed and after my 104 weeks, I was 68 and retired January 4th, 2016. It has been a ride.
Thanks for the interesting and informative article. I have relatively mild myeloma but also have amyloidosis, which was fairly advanced when I was finally diagnosed 4 years ago. So far I've been on CyBorD, Revlimid, Thalomid, and Pomalyst. In December 2016, I took 2 doses of CyBorD but had such a bad reaction I barely escaped the hospital (no oncology beds available.) The night of the treatment, I took the 10 4 mg tablets and within an hour had an excruciating skull and face ache and started vomiting. I'm sure it was the dex. This week I begin Ninlaro, one of the new drugs, along with Revlimid and a lowered dose of 20 mg of dex at my request. I'm 67 years old and had to go on disability because I wasn't able to work because of the amyloidosis effects on my body.
Thanks for this website and again for the article.
You made an interesting observation about clarithromycin. My husband was diagnosed in 2007, 2 stem cell transplants, 3 years stable, then Revlimid / dex / elotuzumab clinical trial (3 years). In 2014, he contracted a MAC infection that nearly killed him. He had to stop all chemo to let his immune system recover to fight it while on 3 strong antibiotics - one of them being clarithromycin. He was allowed to stay on elotuzumab only - no Revlimid or dex. I worried big time since he was not in remission, only stable. Then a strange thing happened. His counts started dropping and a year after stopping the Revlimid / dex, he was in complete remission with NO trace of myeloma of any kind. Five months later, still no signs. He is still on the antibiotics due to the severity of the infection (nearly died - bone marrow completely taken over and stopped functioning). The infection is now gone also. It makes me wonder if clarithromycin might be a hidden "cure" for myeloma. Wouldn't that be great?
Thanks for your willingness to share your dex experiences with us. I have been happily dex free for over 7 years and hope it can stay that way for a long, long time. However, it seems to do the job that other drugs can't do by themselves, so if the Revlimid alone does not keep my multiple myeloma at bay, I will probably have to go back on it. At that time, I believe I will wear a sign to warn people that I am ingesting the stuff so my friends do not call in a priest to do an exorcism. Maybe I will just stay home.
Hey, if we can't laugh about it, we will do something worse, right?
Nice article, Trevor! Many of us can relate (unfortunately).
Before I took my first dose of dex, my doctor joked to my wife that I would feel like painting the house on dex days. Recently I told that little story to another myeloma patient, and he said, "I DID paint my house when I was on dex!"
As Susan said, we have to laugh about it, or else ...
Mike
Eric - I used to watch “The Red Green Show” regularly, but never thought of the connection with the dex-induced complexion changes. Good point! In fact, I haven’t seen much discussion of turning green / yellow and then red with dex, and rather wondered if it was just me. It’s interesting to hear from someone else with the same experience.
Norma - Your idea of going on leave when starting a new treatment makes a lot of sense, given that everyone can react so differently to each drug. You can then gauge how bad it is, and which days are worst, in your particular case.
Lynda - I know what you mean! When he was little, our younger son also had a “good” idea after I lost my hair from chemo. He figured that using chemo could be better than going to get haircuts! Not really …
Nipon - Congratulations on going so long without further treatment after your thalidomide / dex induction therapy. It’s also good to hear from another aerospace person! And, since you ask, my age is 61, which definitely puts me at the older end of the spectrum at work these days.
No steroid therapy is ever an easy one.
Taking sleeping pills to knock me down into sleep was my first experience with dex over nine years ago. I hate the drug.
I got married late in life. My wife knew of my cancer diagnosis before we married. She has been through so much because of the disease. I lost my job and career after 38 years because 5 bones fractured in a year and a half, the large one in my left shin broke completely, during the time doctors were giving me radiation treatments to save that bone.
I spent 5 months in a wheelchair before a surgeon was able to place a titanium rod into my left shin bone, so I could walk again.
But of all the agony my wife went through during that time, my dex regimen has always been worse.
The drug make life intolerable. Sleepless nights follow irritable days. And your loving spouse loses their caring husband to the Incredible Hulk for a few days. Seeking psychological help from pastors, doctors, and a patient wife, gave answers but little relief. Even when the oncologist cut way back on the steroid, life was still tough.
Now, nine months after my second, and final autologous stem cell transplant, we are enjoying some dex-free months. I haven't felt this good in 10 years. But the disease will again take over at some point.
I'm glad you have old movies to pass the time on steroid days. I am a writer, so the long sleepless hours were filled with pages and pages of emotional outpourings and a list of things to do in the morning (once on both sides of a cardboard pizza box, when I'd run out of paper at 3 a.m.).
I am forever angry with the people responsible for damaging our environment with pollutants that I believe have had an adverse affect on me, and may be what has caused multiple myeloma to spike in various areas of Wisconsin. My case is slightly different, but multiple myeloma is a heinous disease, no matter what the trigger is.
As drug companies continue to find new ways to prolong our lives, I continue to research the cause of the disease. It won't save my family from the heartache of dealing with the disease – too late for that – but it might throw light on the causes, and help save another family from this vicious disease.
I hated dex while I was on it. Sleep was almost impossible the first night. I asked the doctor if it was possible to get a prescription of Ambien to counteract the dex. It worked really well for me. I took a whole Ambien on dex day, and a half an Ambien the next day. By the third day I was pretty much back to normal.
Thanks, Trevor, for the column about dex, which many of us patients are taking too. I notice that the 'red' effect flares up about a day and a half after taking the weekly dose of 20 mg, when I get very flushed in the face. Haven't noticed the 'green' effect, although when I was taking induction chemo and the stem cell transplant, I felt green with nausea sometimes! Anyways, I take a sleep aid, trazodone, for the 2 nights after I take dex, and get a good sleep that way. Good luck with all of your treatments!
I've always heard these stories about "dex days" and wonder if I'm the oddity. Except for keeping me up the night of taking my dose, I don't really notice much effect from taking dex. I don't feel irritable, or drugged, or any of the other things people describe. I do use a sleep aid on dex days.
The day after taking dex I also become all red in my face, especially around my cheeks. In the winter, one could think it is the cold air, in the summer it could be an effect of the sun. But what could be the cause in the spring? Not that people ask; they seem to mind their own business mostly.
After starting on 40 mg of dex tablets (and Ninlaro) in early February and having many sleepless nights (1-3 hours a night), I spoke with my oncologist's nurse about this after our return trip from Florida in early April. She recommended I take dex at night so I might get a full night's sleep and, at the same time, have lots of energy to expend on the day after. I started this regimen three weeks ago and what a change it has made. I take dex on Monday evenings after dinner. I got 8 hours of sleep each Monday night after I made this change. I'm not a big coffee drinker, but I've been able to cut back even more on Tuesdays. I don't know if your doctor will approve a change like this, but it'd be worth a try; ask him/her. I like your idea of drinking chocolate milk when you take your dex, but, unfortunately, milk isn't good for me, so I may look for an alternative to mask that awful flavor when I take dex. The taste has been so bad for me, I almost throw up.
It's great to read about subjects that may be old hat to those who have had multiple myeloma for a long time, but it is a new experience for some of us. Thanks for your fine article. Good luck with your treatment and please keep us posted.
Hi Trevor and Monica
I am so interested in the clarithromycin angle. My mum has relapsed after 54 cycles of lenalidomide, which included 20 mg of dexamethasone once per week. We are told the situation is very serious and that apart from adding cyclophosphamide there is nothing more can be done. We are told that docs are not optimistic that cyclophosphamide will help and it will be 1 - 3 month until the end. My mum is 75 and was diagnosed 9 years ago this month. She initially had Velcade, Adriamycin, and dex before a successful BMT, which gave remission for circa 5 years, then the lenalidomide and dex for last 4 years.
I have read a number of articles and considered various trial results when clarithromycin is added to thalidomide or lenalidomide after their responsiveness fails. I asked my mum's consultant and she brushed it off. I was told that no one uses clarithromycin anymore. She said that the papers I'd read were very old when no novel drugs were available. She said that she thought that it had a fairly small effect, but the doctor that championed it initially no longer promotes it.
Notwithstanding my negative conversation, I continued my research which brought me to the Myeloma Beacon. As far as I can see, clarithromycin does seem to have a beneficial effect in some people, particularly those who initially responded well to either thalidomide or lenalidomide, which would be my mum's scenario (54 cycles).
Sorry about replying only slowly: work has been pretty crazy the past couple weeks, carrying over into the evenings, etc.
Lyall – I think I am safe to drive after dex, although I’m certainly not the most considerate of drivers then! I don’t take extra risks; it’s just that other drivers tend to annoy me more than usual. As for work, I definitely wouldn’t want to go to work on a dex day, as I would not stay as calm and polite as I should: that’s why I take it on Saturdays. I know what you mean about the difficulty of working on post-dex days; on the other hand, being kept busy at work does have the advantage that it takes my mind off how crummy the dex can make me feel.
Bob – I agree, the post-dex slump is the worst. Congratulations on your IgA level going down! My latest IgA is down also, and my kappa light chains number seems to have pretty much flattened out. (I would prefer it going down even more, but flat is good too.)
Joel – I’m not sure that spreading the dex dose out over two or more days would help much in my case. When I took 20 mg instead of 40 mg, the side effects seemed virtually unreduced. But that’s just my particular case.
Terry – Congratulations on being in remission! You’re right, it certainly is quite a ride, especially when dex is involved.
Belinda – The skull and face ache and vomiting sound really bad. Have any doctors said whether they think it was the dex? The timing certainly sounds very suggestive.
Monica – Your husband’s experience with clarithromycin is really interesting! It would be intriguing if it has some sort of anti-myeloma mechanism beyond its interaction with dex. Medicine is so complicated!
Susan – So true! Just so long as nobody else laughs at me while I’m on dex: I might not react well ...
Mike – I’m terrible at painting, even when not on dex. For me, paperwork like tax returns or other accounts is about the right sort of activity for a dex day. If only we had to do tax returns every four weeks (not really!).
Norman – Congratulations on being free of dex for now! You’re so right, it is horrible for both the patient and those around them. I don’t write lists of things to do at night like you, but I do find myself lying in bed when I can’t sleep composing long, detailed emails, even down to the details of punctuation. In the morning I generally don’t actually send them, so it’s really a complete waste of time. As for the causes of myeloma, I am almost glad that these are not really understood yet. I feel better not knowing what caused my disease: it makes it somehow easier to take. Or, at least, that’s how it usually feels to me.
Rick and Nancy – I have occasionally wondered about taking some sort of sleep aid on dex days, but have never done it so far. Even though it might work out well, I am still a bit reluctant to take one. This resistance is probably pretty ridiculous, given how many medications I am already taking, but it’s how I feel for now.
Mark – One of the things about these strong treatments that I find so interesting is how they can affect different people in different ways. Come to that, even the same individual can be affected differently on different cycles. I definitely get this with Revlimid. It sounds like you are lucky when it comes to dex. My equivalent is bone marrow biopsies. I really don’t find these too bad, but have heard/read about how hard they can be for some.
Annamaria – Interesting! I tend towards a flushed complexion anyway, so don’t look as unusual on the red day as I do on the yellow/green one. The hiccups that I sometimes get on the red day are annoying though.
Tishpa – Your idea of taking the dex in the evening instead of the morning was something that I’d never thought of! It has always seemed a bad idea to take it right before trying to sleep, but upon reflection it makes a lot of sense, as dex does seem to take a while to “kick in”. As luck would have it, I had my latest myeloma consultation the day after you posted your comment, and they said that it didn’t matter to them what time of day I took it. Today is my next dex day, so I’m going to take it this evening and see how things go. Thanks for the idea!
Mike – I hope that things start to improve for your mother. All I know about clarithromycin is that it definitely appears to have helped in my particular case. Not being a medical person, I don’t know exactly what the mechanism is. What my oncologist told me was the fact that it slows the decay of the dex, but I presume that there may be more to it than that. Incidentally, he is a specialist in myeloma, so what you were told about nobody using clarithromycin anymore does not appear to be entirely accurate. He may well be in the minority though; I don’t know. But it certainly seems to be one of many options to consider.
My husband had a very bad reaction to dexamethasone - temporary dementia. Took several months to recover from about 8 weeks (40 mg/week). Passing it along because I know this reaction is not unique.
Thanks for writing about this important topic.
Kelly: I had never heard of temporary dementia being caused by dex. That sounds really grim. I hope your husband is recovered now.
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