Dexamethasone, which is also sold under the brand name Decadron, is a powerful corticosteroid. Multiple myeloma patients can use dexamethasone by itself or in combination with a number of other anti-myeloma agents.

Dexamethasone ^[1] (dex) works so well with novel therapy agents like Velcade ^[2] (bortezomib) and Revlimid ^[3] (lenalidomide), the manufacturer should come up with an advertising slogan like: “Multiple myeloma drugs work better with dex!”

Dex can reduce inflammation and reduce bone pain. Most importantly, it contains powerful, unknown anti-myeloma properties! Because it has been around long enough to go generic, it is very cheap by myeloma therapy standards—usually less than $40 a bottle.

Great! It’s cheap, reduces pain, and slows myeloma. What’s not to like? The side-effects! Weight loss and muscle wasting, weight gain, bloating, irritability, personality changes, and insomnia, to name a few.

As recently as a last year, dex was given in much larger doses then we customarily see today. A standard dex dose today is 40 mg a week—usually taken all at once, one day per week (see related Beacon ^[4] news).

As many of you already know, “low-dose” dex is still pretty troubling and powerful.

Irritability and anger are the most common and annoying side-effects for caregivers. A chorus of “I want my husband back!” and “I may kill him if the multiple myeloma doesn’t kill him first!” type of comments rang-out at the last International Myeloma Foundation-sponsored Patient and Family Seminar.

Dexamethasone makes most patients hyper. They go and go and go, only to crash in a few days.

Insomnia is the most common and annoying side-effect for patients. One or more sleepless nights typically follow one’s “dex day.”

It is unclear why some dex patients gain weight while others maintain or even lose weight. Abnormal fat deposits, water retention, and "moon face" are all listed as possible dex side-effects. Some patients describe themselves as "hungry all of the time" while they are on dex.

On the other hand, some male patients lose lean muscle mass or experience muscle weakness—opposite of what one would expect while taking steroids.

Like many drugs, the severity of side effects vary from patient to patient. Dosing size and frequency contribute to the severity of one's side-effects. So can combining dex with other medications. The bottom line: Dex affects all of us in different ways.

I liked my “dex days.” Lots of energy, extra time to work and write at night or early the next morning when I couldn’t sleep. I also rarely experienced much of a crash. Dex also helped my bone and back pain. What I didn’t like was the loss of muscle mass—distinct and noticeable. I was glad to be able to drop dex from my maintenance regimen a year after my diagnosis.

What can a patient do to minimize dex’s notorious side-effects?

Timing your dosing seems to make the biggest difference. I originally took my dex in the morning—about 8 a.m. I could get to sleep alright that night. But I would wake up at 4 a.m. the following morning like clock-work. And sleeping the next night? Forget about it!

A great suggestion I received from a fellow patient was to take my 40 mg at night with a light snack. That way I would get at least one more good night’s sleep before the next two nights of fitful tossing and turning.

What about the anger and irritability?

Communication is one of the easiest ways to ease tension caused by crabby “dex days.” Make sure your friends and family understand how dex symptoms make you feel. Keep them updated on your dosing schedule. A gentle warning goes a long way toward helping those around you understand—and forgive—your impatient, angry, or emotional outbursts.

Caregivers should remind themselves that the rude and/or overly emotional person they are forced to put up with on dex days is still the same person they befriended or fell in love with. Try and remember it isn’t the patient saying these things: It’s the dex talking!

Also, getting some sleep helps. And exercising is very important. Walking, biking or swimming can help take the edge off.

Another tip: Instead of trying to force yourself to sleep or relax, use the extra energy to get things done around the house. Organize those photo albums. Clean the garage. I enjoyed waking up really early and reading uninterrupted for hours—a rare treat.

Dealing with “the crash” isn’t as easy or pleasant. Don’t fight it—just try and find a way to take a nap and get some make-up sleep instead.

If the side effects are really bothering you, ask your doctor why you are taking dex. Can you cut-back or stop using it altogether sometime soon?

Feel good and keep smiling! Pat