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Steroid Dependent Disease??


Thu, October 08, 2009 12:00 AM

My 6 yr old daughter has been on prednisone since diagnosis in June.  Everytime we start to wean and get to 20mg, here come the symptoms.  It's so frustrating.  We have a great doctor and are trying to figure out the right path but I just had to say that it is FRUSTRATING.  Does anyone else have kids with steroid dependent disease?  I'm starting to think that's what we're facing.........

FPO azmom
Joined Jul 20, 2009

Sat, October 10, 2009 11:38 PM

 Reply posted for mominmichigan.

Oh yes, mominmichigan, it does work that quickly.  When my daughter was in the hospital, there was a huge difference in just a matter of days.  It (prednisoe) would be a wonderful answer if not for the long term side effects.  I hope your son does well when you start to lower the dose!!!

FPO azmom
Joined Jul 20, 2009

Fri, October 09, 2009 11:17 PM

 Reply posted for AZMOM.

My son was just put on steroids (after three months on Pentasa which he went on when diagnosed).  He's been taking the steroids about a week and already seems much better?  His stool is back to formed and just once a day, no stomach pain and his energy and appetite seem to return.  Do the steroids work that quickly?  

FPO mominmichigan
Joined Jul 24, 2009

Fri, October 09, 2009 12:00 AM

 Reply posted for AZMOM.

Hi Azimom,  My son who is 15 years old diagonosed with IBD in sept. 09, is also on prednisone.  He takes 40mg day which he takes in the morning.  It has been 3 weeks and he seems better. Just the past 2 days, we split the dosage on doctors advice.  20mg in the morning and 20mg at night.  The reason for this is because he was waking up too many times during the night to go to the bathroom.  We thought if we split the dosage, he wouldn't have to wake up so much.  However,  he has had problems during the school day with pain, fatgue, and the urge to go to the bathroom, a problem we didn't have when he took the 40mg of prednison in the morning.  He is now going back to the 40mg  of prednsion at the start of the day so he can get through school.  I am not sure when he is suppose to start tapering off.  But I am very concerned that once he does,  his sympoms will come back.  Like you, I am very sympethetic to your concerns of steroid addiction.  I just wish there were a silver pill to make this all go away.  Sorry, I don't have better advice for you , just a sympethetic ear.

Best wishes

Derek's mom

 

 

FPO dmstern8
Joined Sep 23, 2009

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