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Old 12-10-2011, 04:28 PM   #1
joyce lutz
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Decadron Wean

For those of you who have weaned off of this steroid or who have tried to do so can you please tell me what side effects you experienced while doing the process? My daughter had a craniotomy 11/8 and waas put on 24mg of decadron for 8 days and has now been weaned down to 5 mg/day and gets easily aggitated, angry, has trouble thinking of words and cries often over little things and we are wondering if this is from the wean-down or if something else is going on in the brain. Thanks and my best to you
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Old 12-10-2011, 08:50 PM   #2
StephN
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Re: Decadron Wean

Hello Joyce -
Your daughter is having normal weaning side effects. At least those were the ones I had when I had to take and then come off that dreaded drug.

Having to take the drug every 8 hours is like putting your body on a roller coaster. You are UP and then DOWN. And it is all messing with your normal inner workings.

You may notice she gets very talkative and excitable after about 4 hours. Then she wants to crash, but just when you get to where you can sleep the drug kicks in again.

She may experience pains in her legs or elsewhere if she weans too fast. I had acute pain in my legs and had to step back up a bit for a couple of days and try to go down again, which worked that second time.
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Old 12-11-2011, 08:34 AM   #3
Survivor2be
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Re: Decadron Wean

That was a lot of steroids for her to be on, especially of she's only on 8 now. She probably needs to up the dose a little, then wean more slowly, like 2 mg every week-10 days. Talk to ur doc!!
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Old 12-12-2011, 06:40 PM   #4
joyce lutz
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Re: Decadron Wean

Hi gals - Yes we have spoken to her docs to NO avail. They can put you on this crap but don't know how to get you off of it! I have also read that these side effects are from long term use of decadron too so which is it - long term use or weaning off of it!!?? We are just so upset and confused and no one, including the docs have any answers! Anyone else please chime in. My best to you all
joyce
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Old 12-12-2011, 06:45 PM   #5
joyce lutz
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Re: Decadron Wean

Steph - my daughter takes 3mg in the a.m. and 2 in the pm around 4 or 5:00. She doesn't take it every 8 hours. She never has in fact. It's always been a dose in the a.m. and another in the p.m. ALWAYS the docs want her to wean off of it quicker than she can tolerate it and so she sets her own wean schedule slower than the doc's. She didn't have any of these issues until she began to wean down from the 24 mg she was given for 8 days in the hospital before the surgery. Then about day 14 she had them and they have steadily gotten worse which is why I thought it was from the wean down but then I saw many others who have been on it long term (she's been on it 1.5 years) and they exhibit these symptoms too. We are just so confused.
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