If you got off solumedrol, how long before you lost strength?

    • Anonymous
      April 15, 2008 at 7:53 am

      I’m being a worried mom about this but I’m just looking for lost strength. We have been weaning off solumedrol. He’s down from 160 mg each week to 40 mg. now. Next week, he’ll do 20 mg.

      I have been watching him. The Pt comes today so she can answer a couple questions to see if there is any loss of strength. The past 3 nights, he has been very fitful in his sleep. He’ll call for me but then be asleep when I answer him.

      He does not wake totally yet but I wonder if he could be hurting. Before, he never told us he experiences pain but since he’s had this almost from birth and he’s just turning 4, we don’t know what pain he thinks is “normal” pain.

      Thanks for any input.
      Love, Lori

    • Anonymous
      April 15, 2008 at 9:12 am

      This is my experience with weaning steroids…..I have been on them for 1.5 years and still trying to wean them successfully. Everytime I weaned them too fast meaning too many mg at a time I would get pain in my knees, ankles and my arms felt heavy. I would also lose balence skills that I had gained. I felt whipped. For me it didn’t help just to go back to the dose I was on. It would take a boost of IVIG to return me to previous functioning. My “downfall” would be at 10 days after I decreased the dose. What seemed to work for me was decreasing the dose about 1 week to 10 days before my IVIG was due. I am still working on getting off them. I am currently at 15mg every other day. Now I don’t know what to tell you about pediatric and how it might be different or the same. I hope you find the cause of his restlessness….I can’t beleive Dell is turning 4! Take Care,

    • Anonymous
      April 15, 2008 at 2:34 pm

      Emily did that too while on the steroids. It could be a side effect from the weaning.

      I would ask the dr to slow it down some to see if that helps him out.

      I’ve been wondering how Dell was doing.


    • Anonymous
      April 16, 2008 at 7:23 am


      Last night was better. He never called out. He only awoke to scratch but that is normal. He’s got that “thing” going on in the private area but the immu. gave him a fungal for it.

      The PT came yesterday and for about 30 mins. tested him and wrote things down. I think that will help.

      Love, Lori