[Lindaleela]

Alternative dexamethasone schedule - long-term effects?

by Lindaleela on Wed May 20, 2015 2:06 am

After being on various doses of dexamethasone for 7 of the last 10 years, I realized I was very tired of the up and down energy, sleepless nights, and aching muscles / fatigue associated with once-a-week dosing.

I am now on 8 mg per week of dex (and 10 mg of Revlimid 21 out of 28 days). For the last six months, I have taken 1 mg of dex daily instead of 8 mg per week. It is amazing how well I feel: no sleeplessness, good energy every day, and no muscle aches. My monoclonal protein and free light chains have remained stable.

I have read about long-term side effects of continuous dex, but wonder if they are a concern at this low dose.

Thanks for any help - L

[zara]

Re: Alternative dexamethasone schedule - long-term effects?

by zara on Wed May 20, 2015 9:16 am

Hey!

That is such a good idea! I take 8 mg of dex once a week. First couple of days, I am hyper, hence bad sleep but less bone pain. Next 2 days I am very down. Finally, I begin to settle and it is time to have the next dose.

I will check with my doc if I can take the daily 1 mg or 4 mg twice a week (I have the 4 mg tablets).

I am also usually tired and weak all the time. Is that due to the Revlimid?

Thanks for the great idea.
Zara

[hopeful27]

Re: Alternative dexamethasone schedule - long-term effects?

by hopeful27 on Wed May 20, 2015 2:14 pm

My mom changed from dex once a week to prednisone every other day at a low dose, and her energy levels are so much better!