Myeloma Rocket Scientist: Teaching An Old Dog New Tricks
A few months ago, I wrote a column about taking the corticosteroid dexamethasone (Decadron). I took dex most days for eight months after I was first diagnosed with myeloma in 2006, and have been taking it, between one and three times a month, for the past two years.
I figured that this experience would mean that I didn’t have anything new to learn about taking dex, but this turned out not to be the case. Instead, the feedback on the column taught me a valuable lesson. I thought it would be good to share that lesson, in case there are others who don’t know it either.
Dexamethasone is probably nobody’s favorite myeloma treatment, although it is effective. It is usually taken in conjunction with some other drug. My induction therapy was thalidomide (Thalomid) plus dex, and I am now taking Revlimid (lenalidomide) plus dex.
The problem with dex is that it causes so many side effects. For instance, it can make you rather “hyper” and irritable, and so a bit difficult to live with. If at all possible, it is not a great idea to take dex on a workday! It also can increase hunger and sweating, and in my case at least, it makes me yellow/green on the first day, and flushed the next. I vividly remember looking at myself in the mirror one day in the very early stages of my treatment and thinking that there were two possibilities, neither of them good: either I really was the weird, yellow looking person I saw in the mirror (which would be bad), or I was hallucinating (which would probably be worse).
Another minor, but somehow surprisingly annoying, side effect of dexamethasone is that it gives me a day of pretty much incessant hiccups.
If taken at a high enough dose for long enough, dex can also cause cataracts and reduced bone density. My induction therapy was before the days of widespread “low-dose” dex, so I took it for four days out of the week. Consequently, I did indeed get cataracts, as well as the bone density of an average 90-year old man (subsequently corrected with the bisphosphonate Zometa (zoledronic acid)).
A major steroid side effect is insomnia. Back in my induction therapy days, since I was taking steroids most of the time, I had trouble getting to sleep most days. I used to lie in bed composing lengthy emails, down to the smallest details of punctuation, in my mind. Naturally, (when day came, I usually didn’t get around to actually typing and sending them.) I did manage to get to sleep after maybe an hour or so, though, so it wasn’t too terrible. However, these days, when I only take dex for a single day every four weeks, the insomnia for some inexplicable reason can be much worse than that.
During my induction therapy, I used to take dex in the morning, with a large glass of chocolate milk to cover the bitter taste and prevent indigestion. So when I started taking dex again a couple years ago, I naturally again took it in the morning. Not only was this the way that I had always done it, but it seemed logical. Since dex can cause insomnia, it appears sensible to take it as far from bedtime as possible. The result was that, if I took dex on Saturday morning, I generally couldn’t get to sleep until around 4 a.m. that night.
However, in a comment on my previous column, a read wrote that, after a couple of cycles taking dex in the morning, they switched to taking it just before going to bed. The reason for this is that it takes a while for the steroid to take effect, so taking it in the evening doesn’t give it time to interfere with that night’s sleep.
This seemed logical to me, even though I had never thought of it. In particular, it fitted with the fact that I had sometimes managed to have a nap on Saturday afternoon, after taking dex Saturday morning.
So, as an experiment, I decided to try switching my dexamethasone to Saturday evening, after first checking with my oncologist’s assistant that they would have no objection (they didn’t). The result was that I now get a good sleep on Saturday night! Sunday night is still somewhat disrupted, and of course there are still the mood swings to deal with: the irritability first, then feeling “down” a few days later. However, it is definitely a big improvement. The only downside is that I no longer have until 4 a.m. Saturday night to get caught up on old movies on TV!
I’m living proof that you can teach an old dog new tricks.
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Trevor,
Dex are little horrors I agree. I'm aware of the side effects people experienced with dex and I have every sympathy with you. I was determined that they were not going to get the upper hand with me. So I decided that, as I enjoy porridge every morning, why not combine my dex with this food. The result is no side effects, no insomnia, no dancing on the ceiling, no problems. Because Porridge allows for the slow release of dex into your system in a controlled manner over a period of around 3 to 4 hours. It's also much kinder on your tummy – no indigestion or reflux problems, no gut damage.
This tip is now widely used among others who I have met with multiple myeloma. If you like porridge why not give it a try!
Pain is real, but suffering is optional.
Mervyn
Mervyn - Fascinating! I’d never heard of porridge and dex. I will have to investigate it. When it gets a bit colder I will try it; oatmeal and a Washington summer don’t really go together!
Never heard of anyone else who got hiccups from dex. Doctors never heard of it either. I'd get them for about 48 hours straight some times. They are very difficult to deal with. Makes it tough to sleep and hurts your stomach/diaphragm so much.
Thanks for another interesting column, Trevor.
About the possibility of taking dex with porridge: I would discuss that with your myeloma specialist before doing it. Sometimes part of what contributes to the effectiveness of myeloma drugs is how high a concentration they achieve in the bloodstream. So, spreading out the action of dexamethasone with porridge probably will lower the peak concentration dex reaches in your blood, and that may reduce a bit the anti-myeloma effect of the dex.
For example, the reason subcutaneous Velcade tends to cause less peripheral neuropathy than intravenous Velcade is that the fat in the skin traps the subcutaneously administered Velcade for a while. This spreads out the Velcade dose as compared to IV Velcade, lowering the peak concentration Velcade reaches in the blood. This, in turn, reduces the peripheral neuropathy caused by subcutaneous Velcade, as nerve damage that causes neuropathy is more likely to happen at high Velcade concentrations. However, there also is some evidence subcutaneous Velcade is slightly less effective than IV Velcade -- precisely because the peak concentration with subcutaneous Velcade is not as high.
Trevor,
An interesting column as usual. I took dex during my induction therapy once a week, but the only side effect I had was insomnia, at times going 24-36 hours without sleep. I took the dex with Revlimid and suffered no side effects from the Revlimid. In my current maintenance regimen, I take only Revlimid in a much lower dose, but suffer from serious diarrhea. I wonder if the dex had an impact on controlling the diarrhea during induction? Interestingly, I am on steroids right now for a rather serious upper respiratory infection and have found that my diarrhea issues have subsided considerably. I will make sure to discuss this with my doctor at my 3 month check up next week.
Hi Ian
Amongst my rambling and disorganised library of medical papers is one that compared response rates of IV versus SC velcade. I am pretty sure that it showed no statistically significant difference in response rates.
(Possibly it was in Blood from a couple of years ago).
Cheers
David
And there was me patting myself on the back for my brilliance in working out that if I took dex just before going to bed, it worked wonders for the insomnia.
Just goes to show there is nothing new under the sun
Hi Trevor,
Thank you again for raising this topic. Another interesting article and discussion on our mutual problem, multiple myeloma.
My understanding of dex is that it acts like the turbo charger on your auto, as its performance in the body is similar to a high intake of sugar, which gives you a high and then mood swings and possible depression.
I've been in remission for a few years now following kidney dialysis and autologous stem cell transplant, so my main worry is pneumonia. To deal with problem, I always have a hospital approved antibiotic on hand, plus a couple of slightly different steroids to kick start that drug. In the past 5 years, I have used this medication on two occasions with complete success. Once on vacation, where I would possibly have faced a language problem in addition to a medical one.
I'm Irish, I think sideways! Please forgive me, but I have a zero tolerance attitude now to multiple myeloma.
Mervyn
Only when you are off dex do you find how wonderful you can feel! Now a different steroid is given with my Darzalex, and I feel so good that I can sleep better and have lost 12 pounds. I understand that Decadron is necessary but truly evil, especially for long-term effects. Suzanne
G'day Davidgdg,
You are correct that most studies that have compared subcutaneous and IV Velcade have not found any statistically significant differences in efficacy. My recollection, however, is that IV administration has had higher efficacy in almost all of those studies. Each of those individual studies, though, has not been large enough for this consistent difference to be statistically significant.
Fortunately, there was a German trial that investigated this issue a bit more in depth than usual. In the trial, 42 percent of patients who received IV Velcade had at least a very good partial response (VGPR) to treatment. Only 29 percent of the patients who got subcutaneous Velcade achieved a VGPR.
See the discussion of the study in this article,
http://www.myelomabeacon.com/news/2015/04/20/subcutaneous-velcade-newly-diagnosed-multiple-myeloma/
The comments by Dr. Richardson in the article allude to effects similar to those I speculated about in my previous comment here.
Cheers!
Trevor
You are not alone in the color change effect from dex. A number of years ago, there was a comedy show called "The Red Green Show". I do the green / red show. First day is green complexion, second day red flushed complexion. I took 20 mg per week along with Revlimid. The 20 mg was taken at the start of the week and repeated each week for the 3 week Revlimid cycle. By taking Revlimid at night before bed, I only lost some sleep the following night instead of two nights when I took it in the morning.
Take care
Typically I schedule a treatment for Wednesday that consists of a Velcade shot and 40 mg of dex orally. I too take the dex in the evening so that I can sleep that first night. I have found it takes 48-56 hours to wear off. I get all of the common symptoms, including periodically hiccups. I have found no remedy for them other than taking Nexium (esomeprazole), which seems to help both with acid reflux and lessens the hiccups. Take it the night you take the dex and repeat the second night. I find that it is after 24 hours that the hiccups are the worst. I also get flush in the face and have an elevated heart rate along with some minor swelling in my feet. All of it temporary. Being a bike rider, I can ride on Wednesday following the Velcade, but will not ride Thursday or Friday until the dex wears off due to the elevated heart rate. No fun, but we all find ways of working with it.
I don't know what others have tried for the hiccups associated with dexamethasone, but over the years I have found that taking a prokinetic agent that speeds stomach emptying prevents the hiccups the following day.
Taking metachlopramide or domperidone 30-45 minutes before meals that day works; I also regularly take a proton pump inhibitor like Nexium (esomeprazole) for reflux esophagitis. If hiccups do occur, then rebreathing in and out of a paper bag will stop them by affecting vagus nerve activity.
I hope dex will be eliminated one day. The six months I was off of dex post-transplant I actually had bone growth in radiated lesions. Since dex, no bone growth. Also, I have cataracts and a pot belly from dex. I have horrible insomnia on dex days. My poor husband. We avoid each other and speak little on the post-dex crash day, as I am not-a-nice person. I don't even like myself on that day. I despise the drug.
I initially took dex with IV Velcade in 2009. Followed several months later with an autologous stem cell transplant in 2010. After my stem cell transplant and several monthly good blood work reports, I was put on Revlimid as a maintenance. Started at 25 mg and slowly reduced to where I am now at 5 mg every other day. I've been on Revlimid maintenance for over 5 years with good regular blood work.
In the past 5 years, the problems that were major were 3 bouts with pneumonia, which is what could have killed me like it has killed many others. I'm certain that all of you who have multiple myeloma are well aware of this problem, taking all the precautions you can to avoid the risk factors. Pneumonia aside, the only other problem I am suffering from is a very bad case of peripheral neuropathy. It is so bad that I lose my balance at times and fall down because of it. Since I was not on Velcade that long (the usual suspect), I did look into the Revlimid. What I found out about the Revlimid was that it causes neuropathy with long term use. The pamphlet that comes with Revlimid does not mention this, but a search on the internet revealed much information about Revlimid side effects. Yet another interesting piece of information that has been posted before is with regard to secondary cancer that may be caused by long-term use of Revlimid (that's me). My most recent 6 month blood work was OK, but I was told to follow up with all my other doctors to check for any possible cancerous problems. My urologist (PSA), my PCP for a full physical (lungs, etc.) and my gastroenterologist (colonoscopy).
I just thought I's share this with you all as an FYI. I learned a lot from the feedback I read here, I figure the least I can do is return whatever information I can to maybe help anyone who may not know about some of the things I have posted. Of course I wish you all the best. We are sort of lucky due to the many more options we have now that were not available in past years. We are all different and there is no one size fits all for us, so every little piece of information we can pass along may just help someone. God bless you all!
Trevor,
Great contribution. I will try the evening dosing. I have had higher doses of dex and betamethasone in the earlier phases of my disease (now 3.5 years), and I was sleepless for 3 nights every time. Hard to for example work under such circumstances. I found risperidone to be very effective, 2 mg at bedtime for 2 nights. My hematologist had some objections (some reports of bone marrow depressant effects by this type of compounds, in literature), and I also think there is some distrust because this compound is used for treatment of, among other things, mania. However, before mania comes insomnia and hyperactivity, which I believe you give a good description of, and we all can recognize in ourselves, building on your description. Hiccup was/is also a problem, an acid binder on my bedside table was my resort, omeprazole (Prilosec, Losec) takes longer time to work and is not a full remedy once the reflux is fully developed. Combination of these two was best for me (not to take the omeprazole closer than half an hour before the antacid, which I would guess might otherwise bind and lessen uptake of omeprazole).
Again, thanks for great contributions.
Hello Trevor,
I can really relate to your column. I had most of what you describe with dexamethasone, including hiccups, so bad that after a few hours my ribs hurt. I found the hiccups stopped right away when I breathed air under pressure from my cpap machine (for sleep apnea).
Thanks for your contribution.
Ray: I’d never heard of anyone else who got hiccups from dex either until getting feedback from others here at the Beacon about it. I feel slightly ridiculous complaining about hiccups in comparison with cancer, but it can be surprisingly annoying! It baffles me dex didn’t seem to do this to me back in my induction therapy days, when I took it much more frequently than I do now.
Ian: That’s a very good point. I will check with them before doing anything. On the subject of the speed of release of dex, my oncologist has me take the antibiotic Biaxin for a week that coincides with the day that I take the steroid. If I understand it correctly (and I may not have it completely straight; to mangle a well-known phrase: I’m an engineer, not a doctor, Jim), this slows the breakdown of the dex. It is then active in the body for longer, and so is more effective overall. I can certainly feel the effects of the dex for an extra day or so this way, and my blood test results were improved when we added the Biaxin.
Steve: I thought I got insomnia with dex, but never went anywhere near 36 hours without sleep! I have had similar gastrointestinal issues to yours from Revlimid, and don’t think I have noticed any effect of dex on it. However, it’s really hard to be sure: not only is everyone different, but I find that one cycle can be quite different from another. Just as soon as you think you can predict all side effects, everything changes on you! I suppose you have tried Welchol? Sometimes that seems to work, sometimes not.
Davidgdg: I certainly never thought of taking dex at night either until someone else (Tishpa) mentioned the idea in a comment on a previous column.
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