Decadron Warning (steroids)

[Kilroy1976]

Hi everybody. My doctors put me on a course of steroids (Decadron) to control swelling after radiosurgery, and I wanted to share my experience. I didn't know what I was getting into when I started taking this drug, and if nothing else I want to make sure that nobody else on this board is taken off-guard like I was.

I'm about halfway through my dose, and from my experience, I can say with all seriousness that the ONLY reason that I would take this drug again would be preservation of life. The side-effects have been agonizing, and they run the scale from headache to nausea to depression to insomnia/nightmares and well beyond. Now I'm stuck because the real evil in Decadron is that, once you've started on it, you basically have to stick with it until you can be tapered off.

Do not take this medication lightly. Do your research on the side effects and learn that the few that I described are just the tip of the iceberg. Be sure to ask your doctor if there are any other available treatments. Ask yourself very carefully if you wouldn't rather hit the swelling with a prescription hammer instead.

[wanderer]

wow,  you must have been very sensitive to it.

I have been on decadron 3 of my 7 surgeries.   Mostly to control nausea.     

Mostly I got heartburn and increased energy from it.   

But it is a steroid and has similar effects.   I find prednisone much harder on my system.      It is amazing I think how people can have such varied reactions to things.

[Kilroy1976]

It certainly isn't agreeing with me Wanderer. I didn't have nausea before I started taking it, but now I'm in constant danger of losing any meal I eat (and even some I didn't). I have acid building up in my throat and have lost almost all sense of taste and most of my smell. I wish they had given me prednisone...

[Larry]

Kilroy,

Acid build up can be managed by Losec. This drug has virtually saved my wife's life. her acid build up was so bad, she couldn't eat anything, became very thin and then Losec kicked in and it's great. She has no side affects from this drug. have a chat to your doctor about it.


Larry

[wanderer]

Yeah I used pepcid complete for acid  and it worked very well for me.  You might want to give that a try.


All of my nausea was caused by moriphine.   Once I stopped letting them use that on me,  I had no nausea whatsoever.     


Some people love that stuff,  to me it does absolutely nothing except make me sick and unresponsive in high enough doses.

[Kilroy1976]

Thanks for the tips. I might try some Tums or something for the acid. Unfortunately, the stomach problems are really the least of my concerns...

[Vincent87]

Kilroy:

My intention is not to frighten, but to alert...Mom was initally placed on 8mg/daily of Decadron, then bumped up to 16mg/daily.  She got psychotic.  (Even saw the room flip upside down!)  The same weekend she was admitted to the local hospital her GK doctor said he admitted a young woman to the state's mental hospital.  Decadron is the mother of all steroids.  Yes, it is a miracle drug..but as you know, well, I don't have to tell you.  As for the nausea (Mom has lost about 45 pounds in the past four months), a second neurologist that we went out for a "test drive" as it were, prescribed Zofran.  Very expensive, about $50/pill, usually it's for chemo patients.  Mom's dry heaves were gone within 30 minutes.  Another great anti-nausea drug is Phenegren.  Compazine never helped Mom at all.  If your nausea isn't that severe to warrant these bazookas, Pepcid AC is terrific.  Wishing you a better day tomorrow than today.

[Pembo]

Maybe it was the Decadron that caused my hallucinations in the early days after surgery....I was blaming the morphine?!  The morphine made me nauseous and I couldnt' keep anything down. Then they switched me to oxycontin and I still couldn't keep anything down. Pain meds and I don't do well together.

[Sheryl]

Also, a note for any men with prostate problems.  My husband was put on Decadron before and after surgery for a brain tumor (meningioma).  It just about shut down his urinary system. 
Sheryl

[Kilroy1976]

Vincent, I was also put on 16mg/day after a first-day dose of 10 mg. I've since been tapered down to 12mg/day, and today I "get" to only take 8mg. I don't even know if that's necessarily a good thing as my reactions seemed to get worse when I went down to 12mg, but at least I'm one step closer to being off of it.

I'm very sorry to hear about your mom, but thank goodness they found something to help her. I'm clearly not in the same boat that she was, but I can say that I understand how this drug could cause problems such as those you described. I wouldn't consider myself psychotic, but I've been hit with a wide array of emotional problems (depression/paranoia/general apathy towards life/etc.), and I do hallucinate. Yesterday I had to make my fiancee convince me that the furniture wasn't melting/falling.

Thank you all for your suggestions about the OTC heartburn/acid remedies. I took some yesterday and it really did help to not have the stomach problems on top of all of the other stuff.

[Vincent87]

Kilroy:  Mom is 8 months post-op and last month she'd awake even from a nap and her TV and phone would be upside down.  Her neurologist looked at her as if she was crazy.  As I told him, I'd like to see how he reacts with a steady steam of radiation aimed at his brain matter.  (He's also the idiot who thought Mom was having a stroke and she waited 5 days for an MRI.)  Mom would even dream that she was upside down.  The past three weeks everything seems to be rightside up.  But the dizziness is debilitating; 10 on a scale of 1-10.  She's trying the Anti-Vert again.  Still can't sit up on her own.  As for the taper off, the hospital's neurology department supervised that-not her GK doctor.  (Such bull&^%!)  When she went psychotic she was on her way down...took her close to two weeks for the taper.  Then it stays in your system for almost a month after.  We have another friend of the family who had GK for a cancerous brain tumor.  He's lucky if you can call it that-he's been on Decadron for a year, but then...he heard the word cancer.  (No nasty Decadron side effects for him.)  Finally, Mom's always been a big fan of pasta and that actually helps with the nausea that is when she forces herself to eat.  Hell of diet-she's lost 45 pounds since September.  So mangia some pasta fagioli, Kilroy.

[Kilroy1976]

Chicken parmesian with angel hair and penne last night. Although it all tastes like grub worms to me.

[asteinmetz]

I'll echo the sentiment that I will refuse to take decadron at the dose I was perscribed (16mg a day) unless I am in-patient.  I could not sleep at all without more drugs.  Ambien was able to give a a few hours a night, fortunately.  My bowel function completely shut down.  After a week of no bowel movements, Milk of Magnesia allowed me to have one movement of diarrhea daily.  I took 16mg/day for two weeks then quit cold turkey (on doctors advice we cancelled the taper).  A week after quitting I had a "normal" bowel movement that felt like giving birth.  I was very depressed and irritable and my fiance was in tears, despite knowing that my mood was a drug side effect.  About five days after stopping I was back to normal.

Decadron was prescribed as the first recourse to treat my sudden hearing loss as sometimes an auto-immune response will cause inflammation of the auditory nerve.  Subsequently, an MRI showed a 1.4cm AN.  Now I see here that Decadron is a common post-op treatment for AN radiosurgery.  Argh!

[ppearl214]

Hi all,

Had to chime in since I'm in taper now of decacrud, as I lovingly call it. (now just over 1 week post-CK treatments)

Warned my docs pre-CK that I am sensitive to meds.. and with Papa Pearl being a pharmacist, I also consulted with him since he knows my sensitivities over my past *coff* 45 yrs of life.

Day of CK, they had me start on 4mg/am, 4mg, pm..... I understand the need for it as well as the Keppra (anti-seizure) they put me on.  Keppra gave me a severe reaction, so, they immediately removed me off the Keppra and decided to linger the decadcrud taper instead.  Am now down to 2mg/am only for another week, then every other day for a week then done.  Been supplimenting at night with Ibruprofen.

They were also made aware of an extreme GI issue I have, so they also prescriped 150mg Zantac to take with the Decacrud.  I feel that the Zantac has helped but also attest to the bowel issue.  Primary care physician now has me on nightly heated prune juice/honey combo before bed to help the "cause".

I agree about the energy level and try to remind myself that it's only temporary to help the situation.  Still having GI issues in light of the Zantac and Tums and such, but as for the ultimate need of the drug, I'm just biting the bullet since it's temp.

BTW, I have also broken out in hives the past week... dad and oncol nurse cannot confirm it's the decacrud or just my sensitivities reminding me that my body hates all form of Rx meds.

Phyl

[Larry]

Phyl,

Hives - yuk. hope they are not cyber catchy!!!!!!!!!!