[WV Farmgirl]

Dexamethasone withdrawal

by WV Farmgirl on Sat Apr 23, 2016 9:16 am

Since last November, my husband has been experiencing something like what is described in this thread:

"Not much fatigue usually, then 2-3 day crash" (started Apr 20, 2016)

However, in his case, it recurs on a weekly basis.

When he was getting Velcade and dexamethasone on Wednesday, he would crash on Sunday afternoon and be out of it until at least Tuesday morning. The crashes could be significant. One time I had to call an ambulance and he was in the hospital for four days with an atrial fibrillation heart rhythm. Most times, he is just completely out of it -- incontinence issues, falls where he can't get up, and significant dementia type issues where he cannot do ordinary thing like make a cup of coffee. (For example, he will spend an hour and leave the kitchen with a cup of black coffee with a spoon in it with two containers of cream on the counter and the sugar bowl filled with cream in the fridge.) He has 9 or 10 early signs of dementia. But then on about Wednesday, he will be back to normal, able to discuss intellectual things like philosophy, able to cook a meal for himself, able to work on his computer.

The oncologist theorized that his pain medication was too high. We lowered the extended release Oxycontin from 60 mg 3 times a day (180 mg) to 80 twice a day (160 mg total). The pattern continued although my husband's down period shifted to Tuesday evening through about Friday morning after we moved his chemo from Wednesdays to Fridays to accommodate my work schedule. Oncologist ordered a PET scan of my husband's brain to ensure there were no issues.

Then we cut the immediate release oxycodone from 4 x 30 mg/day to 1 x 30 mg/day. It's been a week. First few days were a bit rough, but my husband seemed okay -- even took a couple of walks outside for the first time since last autumn, cooked for himself, had clear conversations about politics, sports, and philosophy. Everything seemed fine until I came home on Wednesday evening and my niece said my husband had been sitting on a footstool staring at the fireplace tools for two hours. He was once more completely out of it. Unable to take his medication, very feeble and having difficulty moving, incontinence issues. It can take me an hour to get him to take his pills in the morning or the evening. Leaving him home alone while I go to work is terrifying.

One interesting fact: we stopped Velcade three weeks ago but due to some confusion, continued the dexamethasone through last Friday. The only difference is this week, with no new dose of dex, my husband has not come out of the bad period and is still barely functional to the point where I almost called an ambulance again this morning when he fell and couldn't get up in the bathroom.

So my question: Has anyone else experienced any kind of dex withdrawal issues? When I attempt to research it online, I am finding articles about problems stopping relatively low daily doses (1 mg or less) after a couple of months. Nothing seems to address the way myeloma patients take very high doses or a stop and start schedule.

Or is this timing just a coincidence and something else is happening that causes these crashes?

History for my husband:

October 2013, began seeking diagnosis for pain and involuntary movement in legs and feet. Initial diagnosis was polymyalgia rheumatica. Medication was 160 mg of steroid (I think it was prednisone) daily. Stepped that down as low as 80 mg after a couple of months but lack of a complete response led to referral to hematologist for further testing to rule other things out.

January 2014, diagnosis with multiple myeloma. Initial treatment was dexamethasone, Velcade, and cyclophosphamide for five cycles. Autologous stem cell transplant in July 2014. Complete remission before transplant and continued until July 2015.

Revlimid led to good response by September but stopped working in October. Went back on Velcade and dexamethasone then.

[Myeloma_Man_Boston]

Re: Dexamethasone withdrawal

by Myeloma_Man_Boston on Tue Apr 26, 2016 12:20 pm

Your husband's story is like mine. However, I did not take Revlimid after the stem cell transplant, maintenance Velcade for me. I found taking children's Benadryl a day before taking any dex really helps me.

Oh, I have been dex for awhile, no withdrawals. I have spoken to other patients too, and they did have withdrawal situations during course of their treatment.

Take care,

Myeloma_Man_Boston

[Davidg]

Re: Dexamethasone withdrawal

by Davidg on Tue Apr 26, 2016 12:34 pm

It is possible but:

1. The symptoms are not typical of steroid withdrawal
   
2. Although the steroid doses used for treating clonal plasma cell disorders are high, they are pulsed and only given over a relatively short period (weeks to a few months, not years). This tends to reduce the risk of steroid dependency.

I'm not a doctor but I think there are tests that can be done to check whether steroid withdrawal might be the cause (an HPAA function test). Maybe ask about?

Good luck,

David

[cdnirene]

Re: Dexamethasone withdrawal

by cdnirene on Tue Apr 26, 2016 5:43 pm

Prior to diagnosis, did your husband suffer from a sleep disorder?

[WV Farmgirl]

Re: Dexamethasone withdrawal

by WV Farmgirl on Wed Apr 27, 2016 11:02 pm

cdnirene -- No, my husband has never suffered from a sleep disorder.

davidg -- Thanks for the suggestion regarding the blood test. It would be nice to know if these symptoms are being caused by the steroids, the pain medication, or something else. That knowledge would help guide next steps like whether or not to further cut down on pain meds (and what to expect if we do); whether or not to use dex again if my husband's numbers go back up, etc.

Myeloma_Man_Boston -- Thanks for the Benadryl suggestion.

WV Farmgirl