Steroids

[msuscottie]

This morning I had a follow up appt. with my Radiation Oncologist and because I've had pressure headaches since my GK, she has decided to put me on Decadron. I know some people have had horror stories about steroids. What should I expect?

[ppearl214]

Hi Scott,
I lovingly referred to decadron as decacrap.  You may (again, each individual results may vary) experience constipation, lack of sleep, higher energy level, slight weight gain.  You need to "wean" off decadron so please... do not stop it suddenly.... I found the insomnia was my biggest issue but at 3am, I had the cleanest house around.

Hang in there and hope you are doing ok.

Phyl

[tony]

I go with the weight thing
- might be best to resist the Big-Mac-Attacks (or similar) for a while
your appetite will be no measure of how much you are really hungry
And coming off - yes a bit flat for sure
after the nitrous-oxide - you will be back to plain
old gasoline
Good Luck
Tony

[msuscottie]

Thanks, it sounds fun. NOT

[Craig]

I was experiencing cognitive issues so they put me on a decreased dose of steroids for two weeks. I would wake up at 3am and I would be wide awake. I might have slept a little after 3 am but not much. As soon as it was time to get out of bed, I would take that little pill again. I will be honest that it was not a pleasant two weeks but once I came off of them, my memory and speech issues were cured. I feel almost normal now back to my pre-radiation days.

Cheers,

Craig

[Sue]

Yeah, Scott, the sleep issue is a biggie.  I also couldn't really concentrate, so I wasn't reading any good books late at night either.  Just lying there, resting. Maybe with my eyes closed. Maybe just staring off into the dark, or listening to my husband snore, profoundly jealous of him being able to sleep.  Perhaps wandering the house at night looking for a better place to nest - a chair, the sofa, the floor!  *sigh*

Thankfully, it's a week or so out of your life.

Hang in there,

Sue in Vancouver

[Sheryl]

Hi Scott- Everyone is different but when my husband was put on Decadron before and after removal of a benign meningioma, he developed urinary problems.  He does have an enlarged prostate so that didn't help, but the symptoms were much worse for him on Decadron. 
Sheryl

[msuscottie]

I held off for the weekend and my headaches subsided, so my dr. just notified me that no headaches = no steroids. I never started them so she said that I shouldn't worry about it at this point. Whew, finally some good news.

[Dealy]

I was put on a 6 day dose of Presidone (Spelling). This is not as potent as Decadron which I understand is the Grandaddy of Steroids. You might consider this in the lower dosage. It starts out on the 1st day where you have to take six pills and by the last day you are down too just one. Not as many residual side effects as Decadron  I beleive. Just speaking from my experience. Thanks-Ron

[gordy]

well scottie thats good news. guess you wont be chasing barry bonds home run record then. hope all is well.

[pearchica]

Hey Scott- I am in the minority on this but I loved the 3 days I was on Decadron. I called it the happy blue pill. And after the third day of my CK treatment, I asked if I could get more! (Isn't that horrible- just call me Paris, Nicole or Lindsay of the AN group)!  I know my mother and my husband were alarmed when I called them all happy and hyped up!  The sleeplessness was weird but I didn't feel fatigue, just boundless energy.

Knowing what I know now, I would get some books on tape or a lot of pod casts to listen to late at night. I would probably set up some dumb projects to do to around the house- like organzing photos- something somewhat mindless to keep you occupied.

I did find that I could read and watch tv fine. I also called up all my friends!

I ate lots of salad and drank lots of water- didn't have the constipation issues that most people experienced.

Sorry I'm only posting this now- sounds like you are half way through the treatment. Take care and let us know how you fared.  Annie