Thursday, March 17, 2016

Whining About DEX

Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says "everything works better with DEX."  I've taken it before, and not liked it then, but this most recent experience is something new indeed.

Sunday night I took the "usual" 40 mg dose, ten little 4 mg tablets, at bedtime.  In the past this has worked OK for me because the DEX doesn't interfere with my sleep that first night.  And it didn't interfere Sunday night, I slept well.  Monday, then, was "DEX day," full of energy, as if 200% caffeinated all day.  I got a lot done, including an energetic 4-mile walk/run.

Trouble started at bedtime Monday night.  Never in my life have I had such heartburn - was that from the DEX?  I suppose so, I think so.  I slept very little that night, awake because of the DEX and forced to sit up for part of the night to ease the acid reflux.  In the morning my esophagus was still inflamed, warm coffee causing pain when it reached the bottom.

Tuesday became another DEX day, my body once again on full alert.  I tried for a much needed nap, but no dice.  Again I got a lot done, rounding up materials for a wood duck house that we are building for our back yard, and preparing for our upcoming 93rd marathon, but I felt like I was running on empty.  Tuesday night I did finally fall asleep after a couple of restless hours, but awoke again at 4:00 am only to lie there until rising.

Wednesday was strange.  I felt like someone else, I don't know who.  Not sick, but not OK.  I did finally get an afternoon nap, and Wednesday night I was able to sleep, waking Thursday morning mostly recovered.

I really don't want to have that experience again, especially the acid reflux, which might actually have caused permanent injury at the bottom of the esophagus.  I know that the doctors believe that the 40 mg dose of DEX is more effective than a lower dose, but I wonder if it is worth the unpleasantness and, indeed, the risk.  I can try to manage the acid reflux by finishing the supper meal at least two hours before bedtime, and skipping my usual one beer and all chocolate.  I will take calcium citrate morning and evening, and perhaps eventually take a prescription remedy if necessary - I don't have such a prescription yet and don't know if there really is an effective one.

The current plan is to take the full 40 mg once more this coming Sunday and see how it goes.  Sigh.

In other news I am now taking Pomalyst once again, 2 mg daily.  This can suppress neutrophils, but a CBC on Wednesday showed them at 5.2 k/uL, which is about twice what my neutrophils usually run.  I don't know why - does DEX help with neutrophils?  A quick Google search suggests that it may indeed help, possibly one of the reasons that "everything works better with DEX."  Oh well, let's try one more week.

11 comments:

  1. Don, I am also taking Pomalyst at this time but with no dex for now. I have found that taking a couple of Tums for short term relief and also a 150 mg Zantac tablet (ranitidine) at bedtime stops the acid reflux.

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    1. Thanks Mike,
      Good ideas. I did have a prescription for ranitidine at one time, but never used it and both the medicine and the prescription expired. I'll talk to my doc.
      Don

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  2. Don, I always take Ativan the second night to sleep. Otherwise I'd never Sleep. Call your doctor for a prescription. I only take .5 or sometimes 2 or 1.0 then. Also, I've heard 20 mg is as effective as 40 mg. Check with your doctor about lowering to 20mg and then see what your numbers do. Also, I have Zantac also for the acid reflux and heartburn from the dex. It works well. But if you need something stronger prescription Protonix is amazing.
    Good luck on the run, and take care!!!

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    1. Thanks Christina,
      I appreciate the advice. I'll certainly ask my doc about the 20 mg dose, and I'll look up Ativan. This is so odd - I'm NOT a newbie to DEX by any means, but this experience was new.
      Thanks again, Don

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  3. Eve though you have not had heartburn from the Dex before, it is a higher dosage, so you might be experiencing it due to that. Don't suffer....there are lots of good heartburn meds on the market, from Zantac to Prilosec to Nexium. I am a lifelong heartburn sufferer, so if you want immediate relief, go for the Zantac. Prilosec/Nexium takes longer to work. I second the use of Ativan for sleep. I hope the new meds regimen knocks the myeloma out!

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    1. Thanks Ellen,

      I do appreciate the advice. Also, I like to avoid prescription meds when possible, but I'm definitely leaning toward asking for ranitidine for emergency use. In the meantime I have read good things about ordinary calcium citrate (not carbonate) when taken regularly, and I have added that as a capsule of powder 250 mg twice daily. Since I have thin bones, the calcium is good for me anyway. No reflux since I started that, but no DEX since then either. We'll see.

      I still haven't really researched Ativan. That's next. Apparently the generic name is lorazepam, and it's been around long enough to have a lot of information available.

      Thanks again, Don

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    2. The Zantac is available at your local pharmacy with no prescription required. Good luck..

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    3. I'll just pick some up. Thanks Mike.

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  4. Don:

    Sorry to hear you are doing the "Dex Dance".


    I do not tolerate Dex for the very reasons you state,GERD, etc. --plus I cannot sleep for days, I become manic, and my mood goes to S*it in a handbasket.
    My Oncologist says I should take it--but I'd rather take Velcade than 40 mg Dex. At lower doses (below 20 mg) I can tolerate it for 2 weeks--but that is as far as my body will go.
    Many, many, small meals, zantac, calcium, and pepto are what I used, with some effect. Nothing spicy--WOW!

    I feel for you.

    Glad you have some answers and are back on Pomalyst. That drug has been good to you.

    Bob

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  5. Don,
    Ativan or lorazepam is usually used for nausea and anxiety. But it's also a muscle relaxant and I find it very useful as a sleep aid. It's a good thing to get that sleep. It is a prescription, but one I wouldn't be without!!

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  6. Don;

    I don't tolerate dex well but have been using it for the last five years as I progressed thru the revlimid, then velcade, and now pomalyst. When I started the Pom, the doc said 40 mg. I refused. Instead, I take 12 mg on Monday and 8 on Thursday to break up its high and lows. The Pom has helped my numbers but I could not tolerate 4 mg. We have down-dosed to 3 mg and I notice improvement in fatigue and weakness levels. Perhaps, as with you, 2 mg might work just as well. As the years of living with MM increase, we must assert ourself with the treatments. BTW, lorazepam is a relatively mild but effective sleep aid, though the practical solution might be just less dex. Good luck!

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