A few months ago, I wrote a column ^[1] about taking the cortico­steroid dexa­metha­sone ^[2] (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 ^[3] (Thalomid) plus dex, and I am now taking Revlimid ^[4] (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.