The world may not be ready for the 500th column on the joys of dexa­meth­a­sone ^[1] (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 ^[2] (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 ^[3] (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.