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Author Topic: Decadron Warning (steroids)  (Read 15162 times)

ppearl214

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Re: Decadron Warning (steroids)
« Reply #15 on: April 17, 2006, 05:35:08 am »
not cyber-kootie catchy, so you're safe hun... but, now living on Benedryl/antihistimine and creams to help the hives.  Been breaking out bad the past 1-1/2 weeks since I'm on the decacrud so hoping that it will alliviate post-Rx.  Will be off (officially) on April 27, so another 10 days to go... UGH!

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Larry

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Re: Decadron Warning (steroids)
« Reply #16 on: April 17, 2006, 06:44:50 am »
Better not tell CB about the hives. sh sh sh sh
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
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Kilroy1976

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Re: Decadron Warning (steroids)
« Reply #17 on: April 17, 2006, 06:45:04 am »
Delightful chemical, isn't it? If it doesn't make you crazy it gives you the hives. Or makes you break out. Or makes you gain 20 pounds in a day. And the countdown, I remember that. "Ok, if I can just make it 10 more days...9...8...I STILL HAVE ANOTHER WHOLE WEEK OF THIS &#$*?!?!?!?!? I really feel for you. :~(
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Shands Hospital--University of Florida

Battyp

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Re: Decadron Warning (steroids)
« Reply #18 on: April 17, 2006, 08:44:48 am »
Kilroy ONLY 20????  I wish i only gained 20 while on that drug...more like 80!  LOL
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Gayle

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Re: Decadron Warning (steroids)
« Reply #19 on: April 17, 2006, 09:29:30 am »
It would sure be nice if we were informed about some of these possible reactions or side effects before they just automatically threw them at us!!!!
I, too had bad reactions, and refuse to take them ever again!!!
My situation is a little diferent, and there were probably other factors that contributed to my "steroid psychosis".   About 2 months post GK, after checking with my GK Dr., and having an MRI to make sure everything looked "ok", we flew from Colorado to Hawaii for Spring Break.
He assured me everything would be ok (with flying/pressure, etc..).  I was on Decadron, and a decongestant (for cold symptoms).  Long story short, a couple of days after we got there, the pressure in my head had gotten so bad, that I first went to a walk-in clinic twice.  They prescribed more steroids (prednizone), and also 800mg Ibuprophen 3X/ day, another decongestant, & an antibiotic!  I was very leary to take all of this, but "DR knows best", and I knew I just needed to get better before flying home!!  Anyway, I ended up in the hospital, and by the time they could release me so I could attempt to make the trip home I was pretty much in a full-blown psychotic state (or so my husband says!!  He's still telling me stories of what I did or said, that I have NO memory of what-so-ever!!!)   Two days after getting home I ended up back in the hospital here!  The ER Dr. got ahold of my GK DR, who said "give her more Decadron"!!!!!  Luckily the Dr.s here knew that would NOT be a good idea!!!
So, I'm not sure if all of my symptoms had to do with just Decadron, or a combination of everything else I was taking, my cold, and flying, or what----all I know is I'm with you Kilroy, I will never take another one of those pills!!!   QUESTION :  I know you're supposed to taper off
the drug, but I was convinced if I took one more pill, that would be the one to take me over the edge---so I just quit cold turkey!  Does anyone know why you're supposed to taper off ??
I value your knowledge right now more than a DR's!!       Also has anyone else been told NOT to fly, or had any effects from flying???
I'm now 3 months post GK, and having more & worse symptoms than ever before (Dizziness/Vertigo mainly--can't drive or return to work, depression, etc...!)  I'm on 5 mg Valium(2.5 mg in am & 2.5mg in pm), and wear the scopolimine (sp?) behind my ear. Nothing works!!
I am seeing 3 NEW Dr.'s this week, so hopefully some answers!!!  Any insight would be greatly appreciated!!!!
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ppearl214

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Re: Decadron Warning (steroids)
« Reply #20 on: April 17, 2006, 10:28:20 am »
Gayle,

Thanks so much for sharing that with us and I'm sorry your vaca was so interrupted by that!  I am suppose to fly from Boston to the UK (then onto France) in June (2 mos post CK treatment) and you got me thinking... will call my docs at BI and such for follow up on their thoughts based on my individual situation (tumor size, meds sensitivities, etc).

I had thought about it pre-treatment but you have reconfirmed my thoughts on this... I appreciate it.

Phyl
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Kilroy1976

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Re: Decadron Warning (steroids)
« Reply #21 on: April 17, 2006, 11:46:54 am »
Decadron causes your body to stop producing a chemical called cortisol. By tapering down the dose, you allow your body to gradually resume production. If you stop taking it abruptly, before your body is ready to produce cortisol, a potentially life-threatening adrenal crisis can develop.

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Larry

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Re: Decadron Warning (steroids)
« Reply #22 on: April 17, 2006, 04:51:57 pm »
These drugs are similar to anti depressants. which balance your (something - not exactly sure, might be endorphins, when you go off them cold turkey, the brain can't handle the unbalanced chemical levels. You have to drop down very slowly.


Larry
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

ppearl214

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Re: Decadron Warning (steroids)
« Reply #23 on: April 17, 2006, 06:33:26 pm »
heard the same.. can bring on seizures and such from my understanding. Although the crap is driving me crazy now, I just keep telling myself "10 more days, 9 more days, etc"... temp, temp, temp.. only thing helping me get through the restless night's sleep or lack thereof altogether.
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SuzeAN

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Re: Decadron Warning (steroids)
« Reply #24 on: April 17, 2006, 09:39:35 pm »
I have been reading all the posts here about the steroid prescriptions... I am confused, its seems to vary by doctor, I had CK in Oct 2005 in Arizona (Barrows) and I live in Las Vegas; my doc said flying was ok and they didnt prescribe any steroids for me, not even as a "just in case" thing.  I then went on vacation with my family in Nov., and told the doctor I was going to be travelling, he said he didn't anticipate any problems with flying (went to Maui).   I get a few headaches here and there especially when I am overtired; just had my MRI which the doctor didn't indicate that there was any swelling.  But I worry because it seems swelling can occur at anytime.

Wishing you all a speedy recovery from these side effects!

Sue
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sunshine16

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Re: Decadron Warning (steroids)
« Reply #25 on: April 17, 2006, 09:41:07 pm »
I think I got pretty lucky.  I took this medicine for I think a week while I was in the hospital.  I didn't have no serious reactions to it except, had been very thirsty all the time.  My doctor had me took another medicine for the stomach while taking this medication.  I hope I got the right medicine......  =)
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Vincent87

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Re: Decadron Warning (steroids)
« Reply #26 on: April 17, 2006, 10:00:05 pm »
You know what I find absolutely amazing?  We're ALL from different corners of the US...the WORLD...and it's quite universal how ALL these doctors don't provide full disclosure (on the side effects from Decadron for starters).  I guess that's the pharmacist's job when we all pay and sign for the Decadron. Nice little loophole there.  I'm a broken record but Decadron should be given a "black box" warning like Ritalin.  I'm still on the rant.  Thanks for listening.
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kwong521

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Re: Decadron Warning (steroids)
« Reply #27 on: April 17, 2006, 11:51:29 pm »
Kilroy, I am really sorry to hear about your reaction to the decadrone.  My mom just started taking the drug, but she had the microsurgical procedure, so she is already tapering down her steroid intake, but she's already having pretty bad reactions to it after just one day of use: nausea (she can't sit up without feeling like she's about to vomit), she can't walk around by herself anymore, etc.  I really hope those are all temporary, and I really wish you the best of luck in your recovery.  Hope those nightmares and hallucinations go away!   :-*
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Kilroy1976

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Re: Decadron Warning (steroids)
« Reply #28 on: April 18, 2006, 06:45:50 am »
Quote from: kwong521 on April 17, 2006, 11:51:29 pm
Kilroy, I am really sorry to hear about your reaction to the decadrone.  My mom just started taking the drug, but she had the microsurgical procedure, so she is already tapering down her steroid intake, but she's already having pretty bad reactions to it after just one day of use: nausea (she can't sit up without feeling like she's about to vomit), she can't walk around by herself anymore, etc.  I really hope those are all temporary, and I really wish you the best of luck in your recovery.  Hope those nightmares and hallucinations go away!   :-*

I've been off the junk for some time now and I'm basically back to normal, but thank you for your concern. You need to be careful if your mom is feeling nauseous. If she gets sick and can't keep the Decadron down, she may need to be hospitalized so that she can get a drip of it.

Funny you should mention the pharmacists Vincent. I was discussing them with the girl last night, complaining that if you ask them about side effects, they'll just read the paperwork that comes with the prescription. Well, gee, thanks, I know how to read, but it's so reassuring that the pharmacist is there to save me the trouble. On the other hand, I would say that the primary responsibility should fall on the doctor.
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1.8cm AN
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ppearl214

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Re: Decadron Warning (steroids)
« Reply #29 on: April 18, 2006, 08:44:42 am »
Hi Vincent and Kiljoy! ;)

PapaPearl been a pharmacist (ok, I refer to him as the local drug pusher!) for over 40 years.. have spoken to him about some of the affects of some of the meds that are prescribed to us with AN's.  Interesting that there are not many drug choices for us (Decacrud, Keppra for anti-seizure, etc).  I think the drug companies don't want to bother with trying to come up with new possibilities for us..... but, even though my local pharmacist that fills my Rx (nope, not dad), I always double check at time Rx is written by the doc and follow up with the pharmacist to make sure they are agreeing with any and all potential affects.  I've also been known to do internet searches on these meds as well.... guess I'm bored.

Hang in there all.... 9 mores days of the decacrud and I can't wait! w00t! :)

Phyl
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