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A Patient Blog: Taking the Good with the Bad in 'Demon Dex'

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This week I am going to examine the many side effects of dexamethasone--and what we as patients can do to help minimize them.

In my first book, "Living with Multiple Myeloma," I feature a chapter titled, "Demon Dex."   Here's an excerpt:

Dexamethasone is the generic name for Decadron, a powerful corticosteroid. The good news is that it is inexpensive--and it works! Dexamethasone can be used to fight myeloma by itself, or in combination with other drugs.

The bad news is that Dexamethasone comes complete with a long laundry list of possible side effects. A very long list! Possible cardiac arrest, arrhythmias, cardiac enlargement, congestive heart failure, blood clots, impaired wound healing, hair loss, fluid retention and weight gain, weight loss, abdominal distention, loss of muscle mass, abnormal fat deposits, decreased resistance to infection and osteoporosis to name just a few...

Many dex-related side effects can be annoying. Some may even put your life at risk.

Two months into my treatment in 2007, I developed a pulmonary embolism and was forced to spend a week in the hospital. I have been forced to take prescription blood thinners daily ever since.

Most patients who use dexamethasone over long periods of time experience muscle wasting, retain water and begin to develop extra belly fat.  Not what you want to experience when you are an aging 56-year-old trying to maintain a positive body image!  And did I mention possible hair loss, a hoarse, raspy sounding voice, insomnia, extreme mood swings and feelings of anger and rage? 

But as I wrote above, dexamethasone works.  It enhances the performance of all three of the novel therapy agents: Thalomid, Revlimid and Velcade. Most patients take dexamethasone in pill form. Some patients receive dex by IV along with Velcade. But more often it is taken orally, especially now that many patients are taking Sub Q Velcade.

A day doesn't go by that I don't receive one or more emails or comments complaining about dexamethasone-associated side effects. Not taking dex isn't an option for most of us. It is too important to our therapy results to drop--at least at first.

So what can we do about it? How can we minimize dexamethasone-related side effects? See if any of the suggestions on this list help you:

  1. Accept it. You can hate taking dex. But for most of us, the benefits outweigh the risks.
  2. You may be able to minimize insomnia the first night by taking dex right before bedtime.
  3. Since most patients experience side effects for two or three days after using dex, taking an Ativan tablet on nights two and three works for me!
  4. Try to time activities to correspond with your dexamethasone cycle. I know a patient who loves taking dex because it reduces pain and inflammation in her joints, and the "upper affect" helps keep her active for two days. "I can clean my whole house and have energy left over!" she exclaimed. So take advantage of your side effects whenever possible. Can't sleep? Read that book you hoped to find time for. All wound-up and feeling energetic? Clean the garage or those overstuffed closets. Get the idea?
  5. Experiment with your dosing schedule. Of course, as is true with all medicines, changes in dose and schedule should be discussed with your doctor. Maybe my "before bedtime" tip doesn't work well for you. Doctors don't seem to care how you do it, as long as you take 40 milligrams of dex weekly. So maybe taking two or three 4-milligram pills daily works better. Or 20 milligrams on Tuesday and 20 milligrams on Thursday or Friday.
  6. Watch what you eat. Taking dexamethasone can raise your blood sugar dramatically. So don't eat a lot of sweets or other high carbohydrate foods the day after you take it.

Hopefully, realizing how important dex is to your lifesaving therapy regimen will help you deal with the unwanted side effects. But if things get out of hand, ask your doctor if you might be able to reduce your dose--or stop using dex altogether. Research shows dex loses its effectiveness over time. So if it has been a year or more since you started taking dex, asking your doctor to drop it may make sense.

Embrace the challenge and try and find ways to co-exist with "demon dex." Your life may depend on it!

Feel good and keep smiling!

Pat

10 Comments

My biggest complaints with Dex is large bruising on my arms and on the day I take it my fingers cramp up. I realize the necessity of taking Dex and the bruises are more aesthetically annoying then painful, but I would like to find away to minimize them. The cramping of my fingers is another matter. It can be very painful and the first couple of times they occurred I was almost in a panic. Have you heard of this before?
Any information would be greatly appreciated.

Thank You
Barry

I had cramping in hands and feet and blamed it on the Revlimid I was taking with the dex. When I called the Hot Line, the nurse suggested tonic water. I prefer the diet Schwep. It works! About 6 oz. helps me within 20-30 minutes. Since I could predict when the cramps were likely to set in, I began having a glass with a slice of lime in the evening before the cramps got a chance to start. It was one of the more pleasant little rituals associated with my Rev-dex experience.

Thanks for reinforcing benefits of dex. Just had iv dose today..feeling fat, grumpy, with imsomnia.

Good day. I have had MM for a few years and on the days I take my Dex, my legs below my knees and hands and fingers cramps up so bad I can stand it. It gets worse after a day of what used to be light yard duties.

Is this normal? I take 20 mg Dex once a week and Revilmid 27 on and 7 off.

Thank you.

Dean Satchwell
Bonners Ferry, ID

I had troble with Dex when I first started taking it, although not as bad as some of you report. Dr. James Berenson switched me from Dex to Medrol, a closely related steroid. This has worked wwell for me.

Don

Have recently relapsed. Am now on Dex and Rev. I LOVE that someone else takes their Dex at night. It works best for me that way as well. I did that the first time I was in induction with Velcade and Dex. I think everyone thought I was crazy but they said "whatever". After four days, I switched my Rev to evenings as well and feel like I have more energy during the day, less sleepiness.

I am also having the muscle cramps. That's why I'm surfing: searching for advice. I was out in the cold today and my jaw locked -- scary. After I got home, I had a severe hand cramp. previously it was mostly leg and feet. May have to try the Schweps. I grabbed a magnesium tab and a Tums after I got home. Need to get some kiwis for the potassium.

I've enjoyed other readings of your blog. Thanks for all the good advice on dealing with side effects of the disease and the drugs.

I was diagnosed 4 weeks ago with multiple myeloma and I am dealing with the many psychological issues that come with so much "news." I just finished my first 4 week course of therapy and will meet with my oncologist next week to discuss next steps. I am just now getting back my mobility after 8 weeks or so of severe back spasms and bone pain. With the physical challenge of needing help from my wife with everything becoming less acute, I want to work on the mental side.

Any help with that from readers would be most appreciated.

Pat, thanx for the article!
John, I was diagnosed with extremely active chromosome 17P deletion MM in Dec of '12. I had an emergency admission to the hospital for 12 days. I lost 25% of my bodyweight, and I was skinny already. I was essentially bedridden from back pain due to vertebral fractures. I had a severe herpes simplex outbreak in my nose and big toe. I was a sight!
The surgeons wanted to either remove my spleen or my gall bladder, they couldn't seem to decide which, but after 3 days it was decided that I had a massive systemic infection and surgery would be a last resort. Instead, I was given IV doses of antibiotics and steroids. No one expected me to live.
Several days after my release from the hospital I got the results of my Bone Marrow Biopsy and the MM diagnosis mentioned above.
Despite the fact that I threw up in the Drs office prior to my first VRD treatment protocol, the treatment went forward. Much to the surprise of the medical profession I lived, and within 6 weeks I could walk without assistance and my appetite was insatiable. Thank God for my wife! Despite working 50-60 hours/week, she cared for me non-stop during that period. Keeping enough food on hand was a major demand.
Initially I was on 40mgs of Dexy 1X/week. When I told my Dr that I was concerned that someone was going to receive serious injury if I was forced to continue the Dexy in that manner, he suggested switching to 20mgs on Tues and 20 mgs on Thurs. This prolonged my sleeplessness, but my anger levels subsided. It was many months later that I discovered the trick of taking the Dexy at night, this made a huge difference! I was never informed that Medrol was an option. Actually, despite untold hours of reading and research, this is the first I've heard of it: Dexy and Prednisone were all I knew about.
I assume as a result of being so close to death for so many weeks that I escaped the otherwise inevitable struggle with coming to terms with my own mortality: it was many weeks after my release from the hospital and after my MM protocol was implemented before I realized, "I'm going to live". At least for the moment. My psychological struggles pertained more to financial concerns, my wife's health, work schedule, and my initial demands as an essential invalid. Then add to that mix dealing with the horrendous bureaucracy that is my HMO, all while on Dexy and, well, I'm guessing we all have some stories....
I have found sharing my experiences, the good and the bad, with my friends and family has been extremely cathartic. I write an Update on my condition about twice a month. I am very open about where I'm at. While some of the support I've received has been trite and not at all helpful, other support has been profound and surprising, not only for the insightful content, but also at the source. Life and this disease have held many surprises. Most of all I have relied on my wife. I don't know how I would have gotten through this without her.
Chemo brain, severe energy depletion, and the constant concern about contracting a bug have become my day to day. I will probably never be able to work again but this life is still filled with miracles and rewards. Reach out, ask for help, or just ask to talk. You will be surprised!

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